Curious about Caed

The Means to an End?

2012-01-16T00:35:00.001-06:00

We have BIG news this week! On one hand, it's quite exciting.....and the other, very frustrating. We will be headed back to Nebraska in Feb. for another surgery. Our incision issues have been going on for such a long time, and do not seem to be getting any better. They will attempt a wound revision and we will PRAY PRAY healing will take place once and for all!

Drum roll please.........while in the O.R., they will go ahead and remove his feeding tube! I don't even have the words to describe the emotion that brings. Caed has had his button for almost 1/2 his life! I honestly can't picture in my head what his tummy will be like without it. But, oh....SO GRATEFUL!

There have been similar feelings with this tube removal as I did with his central line. HATED that thing, and yet...security was attached. I guess that's how I feel with the G-tube. A couple of nights ago, I had myself a little "Mommy cry fest" while the rest of my family lay sound asleep. Don't get me wrong, we have PRAYED for this day to come. We have planned for this day, and now it's finally here. Images, awful images, flashed over and over in my head of everything Caed has been through these past 4 years. It was like a horrible movie. I knew the ending. I knew it all worked out, but reliving those darkest days and nights released buckets of tears that I didn't know I still had.

This upcoming surgery is very bitter/sweet for us. There is great joy coupled with tremendous fear. Two separate issues, yet both ultimately caused by that unforgettable spring day in Mar. Looming questions, concerns, "what if's." Grateful hearts, celebration, praise. My heart is involved in a tug-o-war battle, but I'm desperately trying to cling to His past faithfulness....knowing I can fully trust then in His future graces.

When Todd sat Caed down a few nights ago and broke the big news to him, a huge smile emerged from his worried countenance. (tends to happen when Daddy "sits you down to talk.") He wasn't thrilled with the incision (surgery) part, but....was super brave and understood. Later, Todd and I listened in on all 3 kids having a private discussion in Reagan's room.

Caed: Caleb, lift up your shirt. See your tummy? Well...that's how MINE is going to look after my surgery.

I wanted to cry. His poor abdomen/chest will have so many RR tracks and scars. I don't think he understands that fully, but our prayer will be as he grows older, those "battle scars" will be a great reminder to the All-Powerful, Healing, Compassionate Hands of God.

Caed has Short Bowel Syndrome. No surgery (other than transplant) will ever change that. This will be a condition he lives with the rest of his life. He will always have to watch what he eats. He will always need to make hydration a priority. He will very likely need supplemental injections or meds to overcome what his body lacks. Routine blood draws and x-rays will be a part of his life. Currently, he has no appendix, no gallbladder, only 10% of small intestine and roughly 1/2 of colon left, a hiatus hernia, and distorted stomach. It's amazing. HE is amazing. Yet, his outlook on life and his love for people are contagious.

Thank you LORD for getting us to this point. Thank you that though at times it seemed we were drowning in helplessness and fear, YOU were still there. Carrying us. Holding Caed ever so tightly! You never let go. And You continually showed us how 'good' was being brought out of a very painful experience. We are humbled. We fall paralyzed and mute........at the thought of Your mercy and grace on our lives these past 4 years. Don't ever let us forget....

You Give and Take Away......yet Blessed Be the Name of the LORD

It's not about you

2012-01-07T21:26:00.004-06:00

We are finally back into the swing of normal life around here. We had a wonderful (WHITE) Christmas this year and truly enjoyed being home for the holidays....something we haven't been able to say the past 10 years living away from Lubbock.

Caed is doing well. His incision is exactly the same.....as it was prior to November's surgery (that was supposed to have fixed it). To say we are not heartbroken and discouraged is an understatement; however, we are desperately trying to be patient and believe healing on the site will take place...eventually. At our last dr. visit with Dr. G, she remained a little puzzled as to WHY it won't close up, but said we needed to try to keep the scab on it as long as we could, and then when it does fall off, continue burning with the silver nitrate. That has honestly been an enormously difficult challenge. Not the burning. But rather keeping the scab on. Caed is as normal a rough and tough little 8 yr. old boy as they come. To force him to sit on the couch all day....would be absolute torture and punishment to him. And I would NEVER encourage that regardless! But, maintaining the balance between physical activity and "staying calm" is impossible. It might be obtainable with an adult, but not so for a child....who tends to live in the moment and doesn't understand certain consequences. We are averaging once a week 'something' happening in which he comes to me with blood dripping down his tummy and scab torn off. I truly don't know what to do. But earnestly praying that some major healing is taking place the 6 days the scab is in tact. ;)

Today was yet another example my heart was broken for Caed. He was invited to a good friend's birthday party. An (indoor) swim party. Currently, Caed is only bathing in a few inches of water, so immersing the incision in a swimming pool is completely out of the question for us. This problem site has gone on for 6 very long months. We just can't take the chance.

This family is dear, sweet friends of ours. I couldn't think of skipping out on it....simply to spare Caed's feelings. I knew it would hugely disappoint him, knowing he could not jump in the pool like all his friends. Sitting poolside watching is something Caed has had to do over and over and over these past 4 years (at various stages). I couldn't stomach the fact that he would have to do it again. I coordinated with the mom and we decided if we came for food and gifts (skipping the majority of the swim time), that would be the best option. Not ideal however.

I probably chalked up another "mama mistake" in the record books, but I chose not to tell Caed it was a swim party until we were right outside the door. I knew Caed. I knew he would be upset. I knew he would cry. And ultimately not want to even attend the party. As his mom I honestly would have been ok with that. To want to spare your child of any pain is what we parents do best. But I also knew he needed to experience disappointment. He needed this to learn from and grow.

As I knelt down to break the news to him, tears began to flood his eyes. He painfully looked at me and whispered, "....then WHY are we even here?!" I understood his question. Don't we ALL find ourselves asking that at some point or another when there's nothing in it for us? I simply replied...."Caed, this is not about YOU. We are here to celebrate your friend!" I turned and walked up the sidewalk. He of course, with shoulders shrugged made no hurry making his entrance into the party.

Yes! My heart hurt for him!! Deeply. He did not want to eat with his friends, and was uncharacteristically quiet. Reserved. Melancholy. He later perked up a little and did what Caed always does when he isn't allowed to swim.....throw objects into the pool for others to catch. We left the party and finished our day just like any other. Caed was not traumatized by this event. He will not experience nightmares tonight. And will quite honestly, forget about it Monday morning at school. He was, however, reminded of a simple truth he will desperately need to learn for the rest of his life.

As much as we wish it weren't true......it's not about us! Any of it. And I believe the quicker we get this....the more we are able to enjoy life. To not take things for granted. To see the 1000's of ways God graciously blesses us daily! And begin looking more to the needs of OTHERS. We are here ultimately to glorify God and enjoy Him forever. But, how quickly we get distracted, lose our focus, and try to turn the spotlight on ourselves.

I know beyond a shadow of a doubt this was not Caed's last "short gut disappointment." That's what it was. Everything he has dealt with and is currently dealing with....is 100% due to short bowel syndrome. I know there will be more heartache to come. But, we also desperately want Caed to understand it's not about all the things he can't do (or may not in the future), but rather..... ALL he can do! God miraculously HEALED that child. There were many days (not that long ago) in which a machine was helping him stay alive. There were weeks and weeks, he could not walk. And MONTHS he could not eat. He is BLESSED! We all are. Whether in the game or standing on the sidelines....watching.

Results are in...

2011-12-21T15:40:00.005-06:00

Caed's lab work and other results came back......GREAT! (sbs speaking) They were checking for vitamin deficiencies and also pancreatic enzymes that are very common in short gut patients (causing fat malabsorbtion). They found neither!! Honestly, this was a huge shock, but SO VERY relieved. Now, we will concentrate on getting his incision healed once and for all.

Caed came running into the house a few days ago...frantic and crying. He had his shirt lifted up and blood was streaming down his tummy. My heart stopped for a few seconds until I realized his "scab" had been accidentally ripped off while playing. (he had fallen) We cleaned it up as best we could and then burned it. Oh, it looked awful! Dr. G's plan is to let the scab come off naturally (unlike the way it happened a few days ago) and then burn it....and repeat as long as necessary.

The news from NE truly makes my Christmas! We will start Caed on some supplement drinks...and then Lord willing, get his feeding tube OUT this next year!! Quite unimaginable to me.....it's been a long 4 years. But in the same breath, 4 years of continued faithfulness throughout all the good AND the bad. Thank you for praying for him......

Still waiting....

2011-12-10T10:07:00.002-06:00

There were some contamination issues with the lab work, so we had to take Caed back and get a re-draw. Honestly, a piece of cake for him. He didn't mind in the least. It was more an issue for Todd and I. We are on pins and needles here waiting for results, so to be told we needed to "start over," was a little frustrating. So.....we continue to wait.

The incision is not looking good. It sends chills up Todd and I's spine when we see it. It is as though this past month and the last surgery never happened. Our next appointment with Dr. G is this Thurs., and hopefully we will have heard something from labs.

Trying to stay positive.......

Stone Cold

2011-12-04T13:11:00.002-06:00

That basically describes Caed when getting any medical treatment these days. He has always been very brave, but the older he is getting...the MORE we are seeing this in him. Thursday he had to get his monthly B12 shot, the "big draw" of labs (9-10 viles), and then when the surgeon began burning and cutting on his incision....nothing. No reaction, just sat stone cold. Todd went with him and said the nurses seemed more nervous doing these things than Caed was!

Now, we wait.

In the meantime, we will start back burning the tissue with Silver Nitrate every few days. (hopefully it will work this time!) Dr. G did not feel the site was infected, so that is great news. We will go back to see her in 2 weeks. I'm certain we will hear something from our IRP team in Nebraska concerning Caed's labs. There has been talk that his body is not absorbing well (or deficient in certain areas); therefore, his body is having a difficult time healing (incision).

Caed has been OFF all feeds for the past 6-7 weeks!! The plan from our time in NE this summer was to wean him this fall and then see how he does "feed FREE" for a few months (checking labs along the way), and then hopefully have tube removed in the spring. This would be HUGE! Caed will have had his feeding tube 4 years. Unbelievable....when I think back on it all. However, if he is having these recent issues due to malabsorption/deficiencies, then we will probably look at some kind of daily supplement. (similar to nightly feedings, but rather taken orally) We are praying he won't have to go back on tube feeds. I keep reminding myself there are worse things than being "hooked up" at night, but.....this really would be such a relief to just have that thing GONE...once and for all!

One definite blessing throughout these past 4-5 months in dealing with his incision has been he FEELS GREAT!!!! Caed is the same active, funny little boy as always. He has not been in any pain (other than emotional at times), which is a huge praise....not to be taken for granted. Thank you all for keeping Caed in your prayers...again! He will get through this.

It Could Always Be Worse...

2011-11-28T21:59:00.004-06:00

I was introduced to this wonderful book back in my Children's Lit class in college. It instantly hit a chord with me....not sure why. My life at that time was relatively easy and care free (particularly in hindsight). But, for some reason the title of this book and the author's purpose in writing this award winning folk tale.....stayed with me. All these years.

Today has been one of those days that self-pity, frustration, disappointment, and fear have taken root (yet again) in my heart. Things were going beautifully. All according to plan. And then I heard that cry...

An all familiar cry we have learned from Caed. When you hear it, you just know.... Gut trouble. 99% of the time it can be easily relieved by a visit (or 2) to the bathroom. It just comes with being an SBS'er. I hollered to him to go to the restroom while continuing to fold laundry. Never skipping a beat. Never thinking anything more. The cries continued. Finally, when I went to check on him, he held his hand over his incision area and let out another moan. Still clueless to what he was trying to tell me, I began reprimanding him for sneaking too many cookies (ie. sugar pain) earlier in the evening. He shook his head no, and finally said softly....."It's my incision. It hurts!"

My heart sunk as my eyes saw the tiny opening. In the same place. I wish I knew what expression came across my face. I wish I could have known to hide it. Soon, Caed began weeping uncontrollably, grabbing hold of me. Then the all too familiar "I'm scared Mommy! I don't want to go back!" echoed over and over off the cold bathroom floor. In that instant, I knew I better shape up and show him that I wasn't worried in the least. The 'Everything was Going to be OK' speech was quickly recited as I tried desperately to get his attention on something, anything else.

But deep down, Todd and I knew. This isn't good. WHY did this happen? The incision had been looking great up until that point. The interrogation began as Todd and I questioned every action, every decision, we had made over these past 3 weeks. What did we do wrong? Should we have allowed this...or that?

I called his local surgeon and thankfully got an appointment this week! Not sure what the solution will be, but our gut (no pun intended) tells us a plastic surgeon may need to get involved now. Once again, I know this isn't a life or death matter. He will get over yet another hurdle. But......we were so hoping this was going to be the end. Problem solved 3 weeks ago. Just seems once you get comfortable again....another curve ball is thrown. We are just tired. So very tired. And ready to get this year BEHIND us!

My heart has been heavy today. A deep sadness swept in last night and has had a strong hold on me ever since. However, as I grudgingly made my way through Walmart tonight....it hit me! Like a ton of bricks barricading my little basket in the middle of the cereal aisle.....

My favorite story! Remember Lori, "It Could ALWAYS Be Worse!!!" No matter the situation. No matter how hopeless. How helpless. How lost...or out of 'control' you feel. It can always be worse. I'm not sure if there is any deep Biblical truth to that little saying, but I do know what it reminds me of when I hear it. I am reminded of the countless...endless number of ways the Lord has blessed me. The ways he continues to bless me. It's in the little things....a roof over my head. Electricity. (sure don't take that for granted this week!) Food in the pantry. A loving, Godly husband enjoying a game of football in the next room. My three beautiful children sleeping soundly (and warm) in their beds. Toys and the laughter they bring. A job I love to go to. And a computer that allows me to share my heart with the world. My list, like yours....can go on and on and on. Things are good! Blessings and favor have been graciously poured into our home this year. We have MUCH to thank God for tonight. And MUCH to thank God (in advance) in the coming days.....

This 'new' problem did not catch God off guard, like it did us. There is a plan and a purpose for everything under the sun. We may question it. We may not understand it. But HE is still in control. And HE will never let go of Caed. He is lovingly, purposefully being held ever so tightly in the palms of His hands.

BIG night!

2011-11-10T20:50:00.003-06:00

5 months. That's the last big bath Caed has had. Ever since his gb surgery in June, we have not been allowed to immerse the incision. Finally, today....he got the go ahead to GET WET! This was a big night. Caed was gitty with excitement. He asked me, " ...you mean I can even dunk my head under the water?"

It's easy to take things like this for granted....until they are taken away. We have unfortunately been taught this lesson over...and over....and over these past 3 years. Caed handles them all like a champ. The Lord blessed him with a very easy-going happy personality. He LOVES to laugh and can find something funny in basically any situation. (sometimes can be a downfall....I've found out this year in school) ;)

Caed has been doing excellent. Our only concern has been keeping him "calm." He feels wonderful and acts as though the surgery last Friday never occurred. He had a great checkup this afternoon with Dr. G. We are certainly hoping this is the end of the incision issues. Thank you all again for your continued prayers! They have certainly been felt.

Gentle Reminders

2011-11-05T18:29:00.011-05:00

The circumstances were quite different, but there we were once again sitting helpless in a surgical waiting room awaiting Dr. G....

The morning started out very early. 4am to be exact. All the pre-op requirements were clock work to me. They were steps to a dance that I had seemingly performed (and mastered) 1000x prior. There is a numbing. A rawness. A cold heart....just doing its job....again, with every hospital admission. Caed was being, like always, a rockstar. He as well knew the drill. Answered the questions. Held out his arms, fingers, and any other extremities when needed as though he was simply tying his shoes. Unphased. I was taken back to the days when he experienced a severe case of white-coat syndrome. Or "ANYONE walking into the room" syndrome. Doctors, nurses, techs, cleaning ladies..... He would fight, cry, beg, kick, and scream. My little boy was growing up.

I could hear the nurses in the next room saying "no owies!" to a crying child. My only choice was to laugh. OH, how I LOATHED those 2 little words. I'm sure for some children it works like a charm. To those who have experienced a trauma so big....those 2 annoying little words are like fingernails on a chalkboard.

Caed was called back rather quickly (3 hours upon arriving). He was Dr. G's only scheduled surgery of the day. Such a blessing. When it was time, Caed was a rock. The PA came, and we walked together as she pushed Caed's gurney down the hall. We got to the all familiar intersection. This is where you stop, give your final hug/kiss and say, "We'll see you SOON!" Caed did not cry or whimper. Just gave a hug and looked straight ahead at the "Authorized Personnel Only Beyond This Point" sign. As the doors closed behind them, my heart sunk. Something was different this go around. I'm not even sure what it was. This surgery was quick and easy. He was not in any pain. Why in the world did I feel like collapsing right there in the middle of the hallway? I told Todd I needed to find a restroom and I would meet him down in the waiting room soon. As I locked the door, I stood paralyzed. Wanting so badly to allow myself the permission to fall apart. To let it all out! The years of frustration, disappointment, grief, pretend strength, intense fear, and exhaustion. A few tears fell on the floor that morning, but were quickly wiped away. The SuperMom suit was pulled out and strategically put on as I walked out of that bathroom to go find my place in the most dreaded room of the hospital. The clock on the wall happened to be right in my view. I tried so hard not to look at it. The minutes passed and at one point Todd and I both felt.....this is taking much longer than it was supposed to. Your mind races. Hands began to shake. And a restless feeling soon floods your entire body. I knew if I had to sit even one more second listening to Regis and Kelly, I would lose it!

Close to an hour and a half later, Dr. G quickly walks in and makes her way to our little corner. Everything went well. She was, however a little stumped with the "mystery stitch" that ended up being the culprit of this whole ordeal. She said it was very infected and quite long with knots on both ends. She took it out and replaced it with a dissolvable one. She also cauterized the tissue around his g-tube site, which I am super excited about. We haven't seen either site due to the bandages, but hope to in the next 24 hours. Our only main concern is staph. Always a big risk with surgery, so we are taking the antibiotic regimen very seriously.

After we talked briefly about the surgery, the 3 of us sat there in a crowed waiting room and had a surprising conversation. It was one I had dreamed about having over these past 3 years. How I wished it would have been longer. I regretfully wish I had asked certain things. However, it was another divine appointment that the Lord knew I needed.

Dr. G sat there on the couch with her head buried down in her lap. She told us, "....in all of my years practicing medicine, there are a couple of kiddos that stand out. The night I saw your son for the first time (Mar. 1, 2008), I had NO clue what was wrong with him. And it's a night I will never forget. Guys, kids have died on my operating table from bursted appendix. It's 2011! I don't understand that! It shouldn't happen. And your son....should not be alive today. Had you gotten in your car that day and headed back to Celina (as planned), you would not have had a son at the end of the trip. It's that simple. I am completely amazed how well he is doing. I can't comprehend how he avoided transplant and/or the STEP (bowel lengthening surgery) procedure." She sat there for what seemed like an eternity. She was not in any hurry. And talked with us about NE and other children in need of their expertise. As much as I loved talking with her, it was hard to hear. Memories of our time with Dr. G were not good ones. Not because of her, but rather she was there during Caed's darkest days (months).

Todd and I sat there agreeing and chiming in. This was NOTHING new we hadn't heard before. But, to hear her. The one that opened him up that night. The one that God used to save his life initially. To hear an expert in pediatric emergency surgery say to you, "I thought he was going to die that night in the OR......", is incomprehensible. I can't express my heart adequately to communicate how awful those words are to hear. And to hear them AGAIN...3 1/2 years later. We hear all the time what an impact Caed has made on people's lives. He, of course, oblivious to the magnitude his story has had on grown adults. But, for me....to hear he made such an impression on a surgeon. His story is one she said she would "never forget." Do you know how many children she has operated on in her long career? I don't think I would even come close if I took a guess.

It reminds me of how it is to be a parent. You SEE your baby day in-day out. Month after month. Year after year. Sure, you see changes in them. You see all the new things they are learning. But, to be that parent who is around that child every single day....is quite different than being the grandparent or family member who only gets to see the child once or twice a year! The changes are enormous! Your brain still has that child looking and acting a certain way. But, then to SEE something else can be mind boggling. I imagine that's how it is for Dr. G. She knew Caed at his very worst. Even when we left for NE, things were not good with Caed. Over 3 years had passed since their reunion a couple of months ago.

We have been with Caed every day.....since March 1, 2008. Yes, we saw the changes. The good and the bad ones. His healing and rehab have been gradual for us. Quite the opposite for Dr. G!
But to see her amazement, to hear her memories from 2008, were just what Todd and I needed.

It's easy to get complacent. It's easy to agree with people, "Yes, he is a miracle!" But, as his parents, all we see these days is....normal. (other than nightly bathtime) He blends in at school, in sports, at the mall. He is just a regular little 8 yr. old boy to everyone who sees him. He gets in trouble at home just like Reagan and Caleb. Even in class, I find myself just seeing Caed. Not my son, and surely not a boy who almost died 3 years ago! And that's how it should be. To be reminded constantly of the magnitude of his story, can be rather overwhelming. I'm afraid I would be an utter MESS if I did. But, I can think back over the course of these 3+ years and see how God divinely allowed paths to cross, conversations to come about, or circumstances to arise in which He gently reminded me of His great work in Caed's life. "Don't forget....." I can almost hear Him whisper. "Don't get caught up in the little things of this life that don't matter.....Remember My Healing Power! My Mercy! And that I LOVE your son and have a wonderful plan for his life!"

I don't know the future. And yet, my heart tells me this was not the last time we will kiss Caed in the intersection of the OR hallway. This will probably not be the last time we will anxiously sit on the edge of our seats as we eagerly await the sight of a surgeon walking through the doorway. Caed's story is far from over. But.....Lord willing, neither is mine.

Thank you Lord for putting up with my wavering faith. For always having to give me gentle (and other times harsh) nudges to remind me why I'm here. Thank You for Your calling on my life, even though I admit at times....I wish it didn't exist. I get selfish and desire to live life MY way. Forgive me! Thank You for YOUR strength over these last 3 years. I know it comes only from You! Thank You for Your mercy once again on my son and for his continued healing.

Halloween 2011

2011-10-31T22:26:00.003-05:00

We had a great weekend dressing up......3 times to be exact. (minus the 103x Caed and Caleb did just playing around the house) My babies are growing UP!

Caleb: "I don't like 80's girls. They look WEIRD!" Oh, but if you could have seen us "80's girls" in person my little man....then you would have been just plain SCARED!

Emotions on high alert

2011-10-30T22:36:00.006-05:00

Ever since Dr. G explained to Caed last week about his upcoming surgery and all it would involve, Caed has been great! I wasn't able to go to this appt, but when I finally met up with Caed a couple of hours after seeing the dr, he burst out of the car saying, "Guess what?!....Next Friday, Dr. G is going to fix my incision!......"(and on and on he went with the details). Almost giddy. I was rather shocked to say the least.

However, last night after attending a costume birthday party, Caed walked in the house and completely melted. There were no warning signs or conversations leading up to his breakdown. I heard a faint cry coming from the bathroom. When I walked in, he was sitting on the edge of the bathtub with tears streaming down his face. "I'm scared!!" I held him for almost a solid hour trying to console as the cries grew louder. I tried to reassure him this one would be "easy." Then...I stopped. I stopped trying to "fix it, " but rather just held him and let him cry it out.

It hit me in that instant the number of times Caed has heard us say those exact words over the past 3 1/2 years. "It's going to be ok, Caed. We PROMISE....this won't hurt. It'll be quick and easy." And yet, how many times were we proven to be liars? How many times did it hurt? How many times was it not ok? And here we are almost 4 years into this nightmare. It's far from quick and easy. I know he's just 8. Kids are very resilient, right? Yes, thank Almighty God they are! But, it's the 1000's of times just like last night that I myself just want to cry right along side him. Agree with him that we are scared too. That it kills us to see him in pain. And how tired....so very tired we also are of sbs.

For several months I have strategically steered clear of a New York Times Best Seller. I knew very little of the book, but anything that has to do with a small boy that becomes ill....I typically ignore. No matter if it gets rave reviews. A couple of weeks ago however, I had stopped by my grandmother's house and she had just finished this "dreaded" book. She handed it to me. Showed me all the pictures and began telling me story after story that was inside. I initially wanted to throw it across the room and move on to another topic of conversation. But, the more she talked, the more I became intrigued. Even after I left, I thought about this book for days on end. Deeply desiring to grab me a copy and dig in.

Yesterday I bit the bullet. I was in a Christian bookstore standing in the checkout line when a beautiful display of bright yellow books caught my eye. When I focused in enough to read the title, my stomach dropped. There it was....again! I stared at it for several minutes, and then without hesitation walked over, grabbed one, and quickly got back in line. Once all the other errands were completed, and everyone was settled at home, I eagerly curled up with that bright yellow book. I hadn't made it too far, when a sickening feeling developed in the pit of my stomach. My first thought was honestly whether I needed to grab something to eat to settle the awful feeling. I continued reading.... I got to chapter 4 or 5 and abruptly threw the book to the other side of the couch. I sat paralyzed. I sat angry. And then got up to quickly try to forget everything that I had just read 30 minutes prior. I went on about my day. Did all the things on my to-do list and more. And yet, it stayed with me the rest of the evening like a bad dream you just can't shake. No matter how much you say to yourself....."stop thinking about it!"....it only magnifies that much greater. Todd was working late, and as I crawled into bed, I could see that darn yellow book staring at me, taunting me, on the lower shelf of my nightstand where I had banished it several hours earlier. I was determined to not give it a second glance. And yet, something unexplainable continued tugging at me. It was a battle I was emotionally too worn out to fight.

I picked it up.

Only to read 2 more pages before once again throwing it to the floor! I was so angry. I don't want to go back there! There are too many painful memories! Please LEAVE ME ALONE!

I have shared with you numerous times what an analyzer I am. I will pick things apart in such detail, I easily lose sight of the big picture. That's where I find myself now. I enjoy telling Caed's story! I STRONGLY DESIRE to tell it in great detail someday in book-form. Why in the world has this little book affected me the way it has?

I live my life daily talking and dealing with short gut. Not only through Caed, but with a support group I am a member of. Parents who are just now starting this journey have loads of questions. I love to share all we have learned regarding various procedures, drugs, etc.... And likewise, have loads of questions myself I ask to those further on down the sbs road. The emails, texts, fb messages, and phone calls from "strangers" all over this country and world....are numerous. I have heard others' stories that are eerily familiar to Caed's. Eerily! I read short gut/transplant blogs every single night. I am completely immersed in it. Hospital life, PICU's, surgeries, the emotional roller coasters, and everything GI under the sun.

So what? What is it about this book that I can't handle? The memories it unearths are not new. I have thought about those and many more SO many times. And have shared them more that I can count. Why is this different? I truly want to finish it. I even tried skipping ahead to get to the "good parts." I don't care about the beginning. I know what he's talking about in every sentence. Been there. Done that. Got the t-shirt!

I keep coming back to this same thought. Does it really matter? Is it so imperative that I finish this particular book? No. Will I someday? Quite possibly. Will not reading this book cause my faith to waiver? No. Will not reading this book cause me to NOT deal with deep embedded issues that MUST come out now? No.

I truly believe I was drawn to this book for a reason. Was that reason God? Very well could be! However, I don't believe His plan is to HURT me. And yet that is what has occurred thus far. Therefore, I will put this little yellow book away (maybe hidden deep in the garage where it can't taunt me....), and trust the Lord will bring it back out if He so chooses...and in the perfect time.

And the verdict is......

2011-10-25T23:08:00.007-05:00

another surgery!

Caed had another appointment with our local surgeon this afternoon. It was decided that since the silver nitrate wasn't working, a surgical fix would be needed. Not certain of details because I wasn't able to be there, but Todd relayed the basic info. She will push the tissue back in and try to find the source of the little blue mystery stitch. It is infected, and she believes it's spreading to the incision area. They might be related somehow. Simple cause and effect. Dr. G will also clean up around his G-tube site (cutting/burning the granular tissue that has built up around it), as well as put in a new feeding tube.

The surgery in itself will hopefully be very quick and easy. However, as a parent.....NO surgery is "easy." Putting him up on that gurney and watching him being wheeled away, puts a knot in my stomach that I can't possibly describe. This clearly is not our first rodeo, and I guess there is a part of me that knows the drill too well. When it comes to hospitals these days, I tend to harden my heart. Put on the tough exterior. Do what has to be done. And then cry about it later.

We have much to be thankful for...

Even though our IRP doctors are 700 miles away and make it super difficult in times like these because of the distance between us......we are grateful for a surgeon here locally that loves Caed. She knows him. She initially was the one who saved his life. And she's good! She has our complete trust.

Yes, it's another surgery. But Lord willing, this will fix our current problem. It's been a long summer and fall for Caed dealing with this day in day out. No, he has not been hurting. HUGE PRAISE! However, we have to change the bandage on it at least 2 times during the day. One perk of having Nurse Mom as your teacher.

Will it ever end? I ask myself that question more than you can imagine. 3 1/2 years. That's how old Caleb is....and how long Caed has become my hero. I tend to associate "the end" with his G-tube being gone! But will it really? We have begun aggressively weaning Caed from his nightly feedings. I worry.....constantly. Is he gaining weight? Is he getting all the proper nutrition he needs to grow and thrive? Am I making poor decisions concerning his health? What if....it doesn't work and we have to reinsert the tube? How long then? What will his teenage years be like? Will he be able to do all the physical things he loves so much? And as an adult? Lord, please prepare his sweet future wife to not only love him, but also be a good, sensitive nurse! ;)

You have listened to me spill my heart out and ask these same questions over and over and over. You have also heard me answer these same questions over and again. Will I ever finally learn? Will I ever STOP questioning God and His ways? ......no. This will be an area I struggle with til the day I die (as well as MANY others). I will never attain complete faith. It will constantly be a work in progress....but hopefully one that is improving.

I am tired. Physically, emotionally, and yes, spiritually. It seems life keeps throwing us curve ball after curve ball. Rather, I guess I should just be thankful coach hasn't pulled us and we are still in the ballgame. Lord, please give us strength. Strength to keep on keeping on. And not to lose our perspective. OUR CUP RUNNETH OVER....!!!

Incison Issues....continue

2011-10-16T22:49:00.004-05:00

First of all, I want to apologize for not staying on top of this blog better. Once our school year started, I have been going strong and have not had much "spare" time unfortunately. Speaking of, school is going great! For those of you who do not know, I am teaching 2nd grade here in Idalou, and Caed has been allowed to be in MY CLASS! I have 14 other students and I truly love them all. I was never worried with Caed being in my room. 99% of the time, he literally is just a regular student....just like the rest. However, the few times we have had to deal with incision (or tummy) trouble, I am SO GRATEFUL to be near him! I had the privilege of homeschooling Reagan (3 yrs.), and now count it equally gratifying to be able to teach Caed. This is a special year that I am not taking for granted.

Now for an SBS update: Caed has done wonderfully ever since the gallbladder removal back in June. No more pain. Thank YOU God for that! However, we continue to have incision issues. There is a small section that just has not healed. Our local surgeon, as well as UNMC, feels it is just granular tissue. We have been burning the site a couple of times a week with silver nitrate, but honestly.....have been very frustrated at the lack of progress. They say it unfortunately takes a long time, but...ughhh! Maybe it just looks worse than it really is. We also are dealing with the "mystery stitch" that won't go away. It is a small blue stitch that sticks out of the skin. NE said they probably would just pull on it...and snip it off.

We are also aggressively weaning Caed from his tube feeds. So far, so good, but I constantly worry about his weight. In lieu of the decrease in calories, we have been pushing PediaSure, which Caed loves. Dr. M wants him to be completely FREE by Christmas. Then we will see how he does (weight & labs), and look to remove G-tube this spring!! A WONDERFUL thing.....yet as with all the other "changes " the past few years, it has me terrified. As much as you hate these machines, tubes, and meds.....it becomes your life. Your safety net. Without them, fear steps in. We will certainly cross that bridge when we come to it, Lord willing.

So, two specific prayer requests for Caed: Incision to heal up & weaning from tube feeds to be successful. THANK YOU!!!!

Other than those things, life is going strong (and busy!). Reagan and Caleb are doing wonderful! Todd and I are again trying to adjust to our new life as 2 full-time working parents.

I have attached a picture of Caed's incision. Sorry for the quality! (never could get it to load right) The silver nitrate will produce a scab....but then falls off, and we start over. The tissue has gotten bigger over the past 8+ weeks, so we are kind of in limbo with what to do next. These are the days when living 700 miles from our child's doctor is not ideal. Although NE has said we might need to make a "quick trip" to see what's really going on with this awful incision.

Thank you again for continuing to follow Caed's journey. And I really do promise to do a better job keeping you all informed.

Fingerprints

2011-08-14T22:23:00.006-05:00

It's that time of year. Walmart shelves are growing sparse in the school supply section. Malls are getting more crowded as everyone scrambles to find shoes, clothes, and supplies to begin a new school year. There is an excitement among most parents. A groaning echoing from most students. I am experiencing both. I teach 2nd grade in the small West Texas town I grew up in. I love it here, and I love my job. I have been working tirelessly up in my room for the past 2 weeks and am super excited for the first day to finally arrive.

But then there is the aching. The pain. The fear. The grief. The disappointment that this summer handed us, and the longing for a "do-over!" Yes, we have been through worse. Much worse. But, it's never easy. I'm getting to the point that the "easy stuff" is wearing on me. I am tired. So very tired. Will it ever end?

Last week at our (local) surgeon's office, she decided we needed to begin putting Silver Nitrate on Caed's incision. If you have never seen SN, then picture a fireplace match. That is what we have to put on the opening of the incision every 3 days. It turns coal black. (and by the way, the container is labeled with enormous letters 'POISON'. I was instructed to be extremely careful in handling it, storing it, and administering it.) For someone who is NOT a nurse, stuff like this sends chills up my spine every time. Dr. G said to come back in 2 weeks and we would reassess the progress. The problem is.....I don't think there is any. It looks the same to me today as it did 2 weeks ago before we ever started the SN. She said, "worst case scenario, we will look at a surgical fix."

My heart is hurting tonight. I feel it in my bones. Surgery will be in order. Granted, it probably will be a very quick, easy one.....but it's #5.

I'm just tired.

Tomorrow is Caed's 8th birthday. EIGHT! I honestly can't believe it. Would like to say 'I don't know where the time has gone', but.....I know better. I remember like it was yesterday standing beside Caed's bed in PICU pleading with God to let us see his next birthday! And He DID! Thus far, four more to be exact. I am humbled. I am paralyzed with gratitude for the mercy lavished on my little boy. He brings us SUCH unexplainable joy. There is something so special about him, of which I have a very hard time wrapping my brain around. The fingerprints of God are undeniably smudged ALL over his little body. I see them! With each and every scar (and there are many), I see HIM!

I don't understand why this most recent surgery has included the complications it has. This was an easy one. And yet.....2 months later, here we still are. A HUGE praise that I cannot fail to mention is that Caed FEELS great! He is as rambunctious and ornery and funny as ever. Other than a few emotional issues (dealt with daily from this incision problem), he is good. Really good. And for that, I am so thankful. We have experienced the opposite this summer, so I don't take these "feel good days" for granted.

I don't know what the future holds. But, I am confident in WHO holds it. Desperately clinging to His promise tonight:

For I know the plans I have for you, declares the LORD, plans to prosper you....not to harm you, but to give you a hope and a future.

He isn't promising 'easy.' But rather that He knows BEST....and will never let go!

Incision Issues

2011-07-28T14:35:00.003-05:00

Well, we had a slight bump in the road (which is expected, I guess). The last of Caed's steri strips came off on Friday. We had quite the celebration! It meant that he could FINALLY swim again. Been a long *HOT* summer not being able to do that. He was absolutely giddy on Monday when we told him 'today was the day' he had been waiting for!

One more item on Caed's summer to-do list was of course go to JoyLand. (Lubbock's amusement park) We had canceled several weeks prior because we knew the rides that Caed would want to go on....might be too rough. I felt it would be cruel and unusual punishment taking him there, and him having to watch everyone else ride the rides he loved so much. And making him settle for the carousel and train! So, we canceled only a few hours prior. This week, more cousins were in town, so we thought JoyLand would be perfect timing (since all steri strips were gone).

However, looking at his incision, we could see one section that just didn't look right. We began putting Neosporin on it a couple of times daily and watching it carefully. Yesterday he came to me lifting up his shirt. He knew something wasn't right. Sure enough....that troubled section had opened up a little bit. We tried to reassure Caed all was fine, but secretly talked about the need to get it checked out. Simply heading BACK to a doctor (any doctor) would sky rocket his blood pressure. Even more so, we knew his heart would be broken having to cancel JoyLand again!!

We wanted to avoid the ER simply because we didn't want to pay $100 for a couple of steri strips. The plan was to head to a clinic instead. My sweet neighbor did some leg work for me calling around and they told her they wouldn't see him (due to it being a recent surgery and an open wound.) I wanted to cry at that point. Going to a clinic is one thing. Going to a hospital is entirely another. I secretly packed a small bag full of things we might need if they decided to keep him overnight. Just something you always prepare for when you take 'these kids' to a hospital. You never ever know! Even though deep down...I knew it just had to be an easy fix.

When we pulled up at the ER, Caed looked around...saw the sign and began crying. It took me forever to pry him out of the car. He was absolutely scared to death. He kept saying over and over...."I don't want to have surgery again!!!.....I don't want them to hurt me!" I tried to talk to him. Told him they were simply going to put another "band aid" on his incision. (and prayed like crazy for that to PLEASE be the case). Finally, Caed got out of the car, but then he wanted to wait for his eyes to "dry up." He did NOT want anyone knowing he had been crying. The entire 2 hours we were there, enormous goose bumps covered his arms and his eyes were full of tears (ready to fall at any time). Once again, he put on his brave face (even though I knew he was dying inside).

The ER doc was one we had seen many times before which was very comforting. He said that particular section was where Caed had been cut on 3x prior. It made sense. The top section was new. It healed beautifully! They weren't able to push it back together before putting on new steri strips. The skin has simply lost all elasticity. So, our prayer is that it will heal up on its own and for zero infection! ER doc was insistent that we come back immediately if we saw more 'oozing or redness.' Our plan is to go see his Lubbock surgeon next week for a follow-up. I feel good having not only a surgeon look at the site, but one that has had experience with Caed. Hopefully, it will be closed up and healing nicely. Telling Caed about this appointment with Dr. G will be another story...... Pray for that!!!

I sat Caed down this morning and together we brainstormed things he probably should avoid for 7 days, and then a list of things he was free to do. I told him breathing and walking were probably fine. ANYTHING else is not allowed!! (haha just kidding....kinda) He has asked me many many times today "What if...." questions. At one point he even asked "If my incision doesn't close up, will I die....?" I just wanted to cry for him. He has been through so much (unexpected) this summer. And now this. Even though this is simple. We are home. Nothing life-threatening. But, sometimes the emotional issues are just as tough (or tougher) as the physical ones.

We have 3 weeks left of summer. Our swimming days are out....again. At least for a week. JoyLand days are out...again. At least for a week. Praying this new bump in the road is resolved quickly and Caed can salvage what little of summer fun is left. His baseball team is having a swim party soon, and Caed was also wanting to swim for his birthday (also coming up). As my cousin said today...."HEAL BABY HEAL!!!!!!!!!!"

That is our prayer....

Doing GREAT!!

2011-07-20T12:32:00.003-05:00

Caed is doing wonderful! His emotional "issues" are getting fewer and farther between. Typically they happen during bath-time. He is terrified that something is going to happen if he gets even ONE drop of water on his incision. We have tried and tried to explain this to him. He doesn't hear us. Caed has not been allowed to swim for almost 4 weeks. 2 of his steri-strips are almost off. The other 4 are still stuck on pretty good. Ugh! Partly due from his EXTREME fear of it getting wet.

(we are making tremendous progress: I talked him in to running through the sprinklers yesterday. He questioned me 80x...making sure everything would be ok. I reassured him. Already today, the kids are back out running through "Rain Town." haha)

I'm not certain of how Caed got these "broken" 3D glasses. (I think Uncle Mark probably had a hand in it) But....the child hasn't taken them off. At first, we thought he was doing it to be funny. We soon realized nope, he truly thinks he looks cool! (someone made the mistake of telling him he looked like Joe Jonas) I looked down at him in church Sunday and saw THIS! I about died. I'm sure the preacher was a bit distracted seeing Caed staring back at him from row 3! haha

Uncle Mark and Hayden got Caed ready for a game of hide-n-go-seek IN THE DARK...outside!

Reagan had a fun weekend celebrating her 11th birthday. She had a sleepover with 7 other girls. They had SO much fun! Stayed up til 5am.....until "Mean Mama" made them turn the lights out and get a little bit of sleep.

Caleb has enjoyed finally having both Reagan and Caed home to play with each day. He is Caed's shadow...

101

2011-07-14T10:42:00.004-05:00

That's the number of questions we are hearing each day from Caed concerning his recent hospital stay. Quite honestly, they completely catch me off guard because they occur at very random times during the day. While walking the aisles at Dollar General I was told...."Mommy, I want you to tell me the truth! " (talk about a statement that makes a parents' heart skip a beat) I thought I was about to be hit with the infamous Santa Claus inquisition. I was ready for that one. Been there-done that. Nope. He proceeded to ask a question about his surgery. Ugh. I reluctantly answered as truthfully as I could without scaring him. That was apparently good enough, and he was on to search out the toy section. There have been so many questions just like this that come at very odd times throughout the day. Some of them are things that I honestly didn't even remember happening.

Caed is definitely doing better though. He has been sleeping through the night the past several nights. I guess he is just processing it now through all his questions. It saddens my heart that he even has to go through this, but I know it's just part of the process. And unfortunately....it's life.

This too shall pass..............

"I'm scared....

2011-07-10T20:23:00.005-05:00

....something else is going to happen."

These were the words Caed said to me last night before bedtime. He was crying as his entire body trembled with fear. I tried desperately to calm him, reassure him all was going to be ok; however, I realized at that moment, it was deeper.

Caed has had a rough several days. He has woken up many times during the night (or while napping on the couch) crying out for me. Our first response is to ask him WHERE he is hurting. Oh God! Can this really be happening again? He never responds to us. Just continues crying. A few times he looks at us with eyes that are completely glazed over. Then when questioned about it in the morning, he has zero recollection of what took place.

One of two things might be happening: Our first assumption is that his hernia is beginning to hurt. He is currently on medication for it, but the drug the IRP team wanted him on....was NOT what the insurance company agreed to (for now). If this indeed is hernia related, I know we can begin the process to get the "big gun" drug approved. However....this might be something entirely unrelated to any kind of physical pain. Caed experienced night terrors on and off after the '2008 Crisis' as well as Post Traumatic Stress Disorder. I in no way am comparing that to the last 2 months, but am wondering if some of his fears (from ALL that he has gone through this summer) may be the cause of the night waking. ??? I truly have NO idea. We are still on the fence.

I must admit however (even though the shingles kinda blew my 'everything's fine!' cover), Caed's words last night mirrored my own heart's cry. What if something else happens? What if the next shoe falls? I am scared.

This morning in church our pastor spoke on the sovereignty of God. There were many things I got out of the sermon, but one in particular was that.....my God is BIG, no HUGE! His thoughts, plans, and purposes are completely incomprehensible to us. But they are good. I don't know what's going to happen. To Caed. To me. To anyone. Worrying about it though accomplishes nothing. It doesn't change the outcome....only robs you of living life and ENJOYING all the blessings God has graciously given.

Thank you for praying for Caed (and our family). We have been absolutely overwhelmed at ALL the love and support shown to us once again! You have blessed us!! I guess I shared all this for you to know how to pray specifically. Either we have a painful hernia to get under control or a little boy who has some tough emotional issues to get through. Or BOTH!

You will not fear the terror of the night, nor the arrow that flies by day.....If you make the Most High your dwelling - even the LORD, who is my refuge - then no harm will befall you, no disaster will come near your tent. For He will command his angels concerning you to guard you in all your ways. (Psalm 91:5, 9-11)

Happy 11th Birthday

2011-07-06T10:18:00.002-05:00

...to our July 5th Firecracker!!

Reagan, it's hard to know where the years have gone. Seems like yesterday you were having to be lulled to sleep by the VACUUM CLEANER! (vacuum off = screaming / vacuum on = quiet) Needless to say, back in those days, my carpet was spotless! You were a very strong-willed (wild-haired) little baby/toddler with a princess-filled imagination. You have grown into a beautiful young lady with a caring, sensitive heart. Daddy and I pray that you continue to follow Jesus and grow more in love with Him everyday. HE has big plans for your life! It won't always be easy, fair, or the most fun......but TRUST HIM. His ways are always BEST...and HE will pour blessing upon blessing onto your life.

PROVERBS 3

^1-2 Good friend, don't forget all I've taught you; take to heart my commands.
They'll help you live a long, long time,
a long life lived full and well.

^3-4 Don't lose your grip on Love and Loyalty.
Tie them around your neck; carve their initials on your heart.
Earn a reputation for living well
in God's eyes and the eyes of the people.

^5-12 Trust God from the bottom of your heart;
don't try to figure out everything on your own.
Listen for God's voice in everything you do, everywhere you go;
he's the one who will keep you on track.
Don't assume that you know it all.
Run to God! Run from evil!
Your body will glow with health,
your very bones will vibrate with life!
Honor God with everything you own;
give him the first and the best.
Your barns will burst,
your wine vats will brim over.
But don't, dear friend, resent God's discipline;
don't sulk under his loving correction.
It's the child he loves that God corrects;
a father's delight is behind all this.

Praise You in This Storm

2011-06-30T22:36:00.016-05:00

I have so much I want to write about, and yet for the last several days, I have felt completely paralyzed. I don't even know where to begin....

The last 6+ weeks have been a gradual nightmare that I begged God to please stop. The amount of pain and the severity of Caed's attacks got to the point (up until hrs of boarding the plane to NE) that I couldn't continue sitting helpless at his feet watching him suffer. I was desperately needing to cash in my 'good actress card.' Even though the sbs, colonoscopy, and endoscopy all showed his bowel looked ok (minus the finding of the hiatus hernia), we still felt it had to be Short Gut related. As I began explaining to the IRP team at UNMC what the past 6 weeks had been like for Caed, immediately Dr. M asked, "Does Caed still have his gallbladder by chance?" Gallbladder! What in the world are you talking about? No other organs need to be discussed here. ONLY bowel! I knew during Caed's initial surgery 3 yrs. ago, the surgeon did remove his appendix (along with the majority of his intestines). But, I didn't remember them ever mentioning the gallbladder. They immediately scheduled an ultrasound to find out, as well as keeping a close look at the pancreas. Caed was very scared about this "new test, " but later informed me it was now his favorite! Mine too. The dark, cool room.....with the hum of the machines lulling you to sleep while someone gently oozed warm jelly all over your tummy and back. It lasted almost 2 hrs, and Caed dozed off more than once. Todd and I of course were feeling torn. Nothing wrong with bowel = GREAT NEWS! A problem with entirely new organ = sick to our stomachs. Obviously, we knew between gallbladder and pancreas, we definitely wanted it to be gb. At this point, I knew our 3 day scheduled trip to UNMC was going out the window in a hurry. I was alone and scared.

Meanwhile, while all of this was going on with Caed......our dearest UNMC friends from NZ had just lost their 5 yr. old daughter. This wasn't supposed to have happened. They had journeyed long and hard to get to the US for Aria to have a shot at life. (multi-organ transplant x2) God had done amazing things in this little girl's life. He indeed had preformed miracle after life-saving miracle in her 5 short years of life. My heart was absolutely broken. Broken for a hard fought battle that had been 'lost.' Broken for this amazing Dad who had to let his baby girl go. And broken for a Mom who held her one and only daughter in her arms as she went to be with Jesus. This was my friend. I couldn't even fathom the pain, the grief, the hurt, disappointment....coupled with the joy, HOPE, and unspeakable peace they were dealing with. The timing of our trip to NE was 100% providential. Our apt wasn't scheduled for 3 more weeks. But, due to the (gallbladder) attacks Caed was having, it was imperative we get there ASAP.

God knew.

He knew 4 friends needed each other. He knew we each needed comfort and encouragement. We needed to say good-bye..........

I needed more last week. I needed a reality check. I needed perspective. As much as my heart was hurting for Caed, I needed to be reminded of families who would long for a simple gallbladder removal surgery. My fears then turned to thankfulness. I was thankful for God's mercy on my son. Selfishly....thankful for my 'normal, healthy, thriving 7 yr. old.' Sure, Caed has issues, chronic ones...but he is alive. Guilt soon began flooding my soul. WHY GOD? WHY?? Why do you spare some children and allow others to suffer.....suffer hard? We will never know the answer to this question and many others like it this side of heaven. But, maybe I got a glimpse.....

Aria's funeral was streamed live on the internet. Chills raced down my spine as the picture loaded and I could see my friends sitting there on the front row. Across thousands of miles and many time zones. There I was. (Seemingly) sitting right up in the balcony overlooking the congregation below. Puddles of tears formed on my kitchen floor. My heart was exploding for Anita and Hamish. I simply couldn't imagine the pain they were feeling at that very moment. The denial. And yet....the tears fell harder and longer as I watched these precious 2 raise their hands and sing PRAISES to their Holy, Faithful, Loving God. He was there! He was holding them up. And He was TRULY honored in that service. Maybe I had it backwards. Maybe Aria was the one that was 'spared.' And Caed is the one that is still left to suffer on this earth awhile longer. Either way, God knows and He has a plan. A plan that will bring Him the most honor and glory. We PRAISE Him for Aria's life. I think it's impossible to count the number of people (ALL over the world!) that God lovingly allowed this little girl to touch.

Hamish and Anita have become our life-long providential friends. The story of how God led us to each other is.....amazing! We don't know when/where our paths will ever cross again (face to face), but the unlikely friendship that was formed 2 years ago.....will last forever. We love you both SO very much!!

Now, back to Caed. The ultrasound showed everything to look great....except the gallbladder. It was enlarged, contracting, had very thick walls, and just didn't look right. So, what do you do? Take it out! I knew this was a very common surgery and people could live normal lives without them. However, Dr. M decided against doing it laproscopically and instead would cut on Caed's original incision. He wanted to take a liver biopsy (his numbers looked good, but just something you want with these SBS kids when you get a chance). Todd was able to fly up the Thurs before the surgery and stay through the weekend. Such a blessing! I was really nervous about telling Caed. This time he wasn't in shock.....bleeding internally....and close to death. We had 2 days to think about it....dwell on it, and allow our minds to go to places it shouldn't. Memories, awful memories flashed in my mind continually. We hadn't experienced "easy" surgeries and hospital stays. My mind couldn't fathom what that would be like with Caed. But, we simply had to trust God and remind ourselves Caed was still being held ever so tightly in His arms. He hadn't let go...even 3 years later. The day of the surgery was very difficult. Caed was now almost 8 years old. He had past experience and knowledge of things that 'happen' in hospitals. He knew being put on a gurney was a scary thing. He knew he would be wheeled away....alone.....with strangers, and that pain would occur. He was SO brave. Fear filled his eyes. He whispered for us to please help him. To make it all stop. And continued saying over and over how he just wanted to go home. 'Good actress card' had to be pulled out yet again as I remained cool, calm, and collected and reassured Caed this would be 'quick and easy.' (even though my heart was screaming the exact same words as Caed)

The surgery was successful. Lasted almost 2 hours. Pain did indeed pay Caed an uninvited visit over the next several days, but he was so strong and brave and did exactly what the drs and nurses told him to do. As Caed recovered those next few days, I caught myself just starring at one amazing little guy. My heart was so very proud of the person he was. He has had to endure so much these past 3 years, and yet you would never know it. His personality is magnetic. And I knew God had such wonderful plans for his life. At the same time.....my heart was also so very broken. He is 7. These past 3 years have been filled with so many tests, procedures, surgeries, medications, tubes, lines, sticks and pokes. What will be next? Yes, this surgery fixed our current problem, but will it just continue...? One problem after another for the rest of his life? Again, thankfully I don't have the answer to that question. Only ONE person does, and it's imperative at times like these we don't forget that. That ONE person has promised that He has plans for Caed's life. Plans to prosper him. To give him a hope and a future. We have to cling to those words. To trust.

Caed is most certainly our Rockstar! He is healing wonderfully. Back to his old self...minus a little slower and hunchbacked. The awful pain that he had been suffering with the past 6 weeks....is GONE!!! Praise God! We truly hope the gallbladder was the cause and now is taken care of. Caed will need to 'take it easy' the rest of the summer which will be a chore in itself for Todd and I. (please pray for us! ha) I think Caed understands....but again, he's 7.

And by the way....we have learned that this was Short Gut related. Over the past week, so many of our SBS friends have confirmed this as their children also had to have their gb's out at some point during their journey. I don't remember the entire anatomy lesson Dr. M explained to me...(or was it actually that most of it went over my head?), but it has to do with the ileum, bile salts, and gallbladder. Since Caed does not have his ileum (section between sm and lg bowel) anymore.......the gallbladder most always goes 'bad.' Dr. M said when he performs surgery on these kids for whatever reason, he always removes the gallbladder (even if it looks perfectly healthy). The surgeons here in Lubbock who took out Caed's bowel initially were not looking long term. They were not thinking "short gut life." They were solely focused on saving Caed's that night. And for that, we are thankful.

We are home. Ready to finally start our summer. I, on the other hand, came down with a case of shingles while in Omaha. I wonder how that happened?? ha I certainly have not been under any stress this past month.... I am hurting pretty bad, and medicated.....but once again questioning God's timing. ;) This too shall pass.

Here are a few pictures from Caed's homecoming Wed night. As my dad, Caed, and I made our way home from the airport, this is what was waiting for us. It was SO sweet. 12 friends/cousins painted signs for Caed and hung them on the bushes, front door, and walkway. Tears fell again that night. I was reminded of God's compassion and how He provides just what we need when we need it most. This was simple. Created by children. And yet exactly what my heart needed right at that moment.

We have been overwhelmed once again at the outpouring of love and concern for Caed during this time. Our hearts are FULL! And we are truly humbled by the thoughtfulness and generosity of so many. Our cup runneth over......

I will leave with Caed's theme verse:

Consider what God has done. Who can straighten what He has made crooked? When times are good, be happy: but when times are bad, consider: God has made the one as well as the other. (Ecclesiastes 7:13-14)

....which is how we can still praise You in the storm!

Post-Op

2011-06-25T20:16:00.002-05:00

Caed's surgery lasted about an hour and 1/2. All went well. Dr. M cut on Caed's original incision, removed gallbladder, took liver biopsy, and cleaned up a few adhesions. Caed is recovering as expected. Today was hard, but he has been super brave!

I have MUCH I want to write about.... This week has been tough. REALLY tough! Foremost in our thoughts is Anita and Hamish. They lost their little girl on Monday. We had a sweet time together on Thurs, but my heart still aches so badly for them. Then....everything Caed has gone through. This surgery was not on our agenda when packing our bags for Omaha. I am thankful for it, but just wasn't prepared.

I will write more.....when I can. THANK YOU for all your prayers!

Surgery #4...

2011-06-22T19:52:00.002-05:00

is set for Friday. This one however, should be MUCH less "traumatic" than the last 3. Caed will have his gallbladder removed. They have searched for every probable cause to his pain, and feel this is it. Everything else has come back "normal." His gb doesn't look right, is contracting, and has very thick walls. Not sure if he has any stones....they weren't able to see.

Caed knows NOTHING of this as of now. He gets so scared by the dreaded "S" word, so I am trying to keep him as happy as I can.....for now. I am not sure what time it is scheduled for, but will let you know. Surgery is surgery....for Mommies and Daddies having to sit out in the waiting room. I am still VERY nervous, but know God is still in control. I mainly just hate that Caed continues to have to deal with issues. (pain, meds, surgery, scopes, xrays, trips across the country to see docs, etc...) I shouldn't complain. Just long for complete normalcy for him. Tough seeing these kids go through all they do. (and Caed is one of the "healthy ones.")

Todd will be flying in tomorrow....which I am SO relieved. It's been tough being here alone with all the issues Caed is having. Once Todd has to go back to work (Mon).....my dad will come and help Caed and I the remainder of the time (and to get home).

I really dislike updating this way. Short and sweet. But....knew I needed to get this info out. It's truly a praise!!! And Lord willing Caed will be feeling MUCH better once it's out. Definitely worth it. Thank you again for your prayers!

We made it!

2011-06-21T14:02:00.003-05:00

This post will be short and sweet. I have a very wiggly impatient little boy sitting beside me that wants "to go!"

Met with docs this morning. It was a different clinic visit than we've ever had before. Typically there is a game plan or "just keep doing what you're doing..." discussion. This time there were lots of questions and lots of possibilities thrown out. We are so grateful to finally be here and know it will only be a matter of time before we get this thing figured out. We are starting at "A" and will continue on until a probable source is found. Yes, Caed does have the hiatus hernia. Yes, it most definitely could be the #1 problem. However...some of his symptoms aren't so black and white. That's why they want to rule out anything else first. Caed is scheduled for an ultrasound in an hour primarily to see if he still has his gallbladder. (unsure whether it was taken out at initial bowel resection) We think he probably does. Also will be looking at pancreas. If it is one of those...they could be the cause for GREAT pain. So....we will start some med for hernia....give it 2-3 days. Look at ultrasound, and go from there.

Caed had only pain spell during the night last night. NONE today...thus far. If/when he does...we are to immediately go draw labs (pancreatic enzymes). Very nice part of staying here at hospital.

I will update more later. THANK YOU a million times over for all the encouraging messages and all those PRAYING for Caed. I have a tremendous story that happened yesterday (travel day). Will save that for another time. Just know your prayers are being HEARD...and answered! We love you all!

I Love You

2011-06-18T23:25:00.005-05:00

Today was HARD.....

Caed awoke at 5am crying in pain. That pain lasted until 2pm! I unfortunately had 3 C-Sections when giving birth to my babies, but Caed's pain reminds me a lot of what a woman in labor experiences with contractions. You can almost time Caed's next spell to the very minute. The worst ones of course are more frequent and greater in intensity. Sometimes, however...he can go every 30 minutes between spells. Today seemed almost constant...

He had a birthday party to attend this afternoon and kept crying to me how much he wanted to go. I knew he did! This party had been anticipated for weeks. After one of Caed's spells....I knew we had a very short window to jump in the car and get to the party before the next one would hit. If it did.....we would go inside (it was at a family member's house, so I felt very comfortable doing so). However, the next one never came. Caed did wonderful!!!! He was completely normal again those 3 hours. SO good to see! Once we got home, he went into the kitchen and had a glass of milk. I didn't think a thing about it. Caed loves milk....like his Mama. About 20 minutes later, another spell hit. This time lasting the next 4+ hours. A grand total of about 13 hours in all today....hurting.

I honestly can't describe the feelings I have had the past 2-3 weeks, but primarily the last 5-6 days. Memories of the worst time in my life keep flashing before me. Caed is crying....I am right there beside him rubbing his back, his head, anything. I am drowning in helplessness. He is BEGGING me to fix it with tears streaming down his cheeks. Now...fast forward 3 years, life around us has changed. The setting is different. The characters have gotten older. And yet the main plot still seems very familiar. Reagan is now a pre-teen. yikes! She understands more (but not enough) and is scared. A few nights ago, Todd was working late, and Caed had the worst spell(s) to date. I was panicked here by myself with all 3 kids....and one I was certain would be making a trip to the ER. When I awoke Reagan, she knew. She could hear the cries. The screams. She immediately grabbed my neck, hugged me, and asked if Caed was going to be ok. Caleb...... (now a BIG boy) is learning. He has been my nurse's aide for several months each night priming Caed's pump. This little 3 yr. old can work it, and gets very upset if it's done without him! This week he will sometimes come in the bathroom with Caed and I (during a spell) and sit and kiss his brother's leg or arm. I have overheard Caleb talking to himself while playing, telling "someone" about his big brother that has a hurt tummy.

I don't like where we find ourselves currently. Caed was the IRP "Rock Star!" He obviously has had his issues (post NE), but NOTHING like this. Sometimes the IRP docs would ask us...."now WHY are you guys here, again?" It was a wonderful feeling. Caed had overcome SO much! I keep reminding myself of that and try to believe everything is going to work out. It may take some trial and error. It may take some time. But, we WILL get this figured out! God has proven Himself faithful over and over and over and over......He hasn't changed.

Tonight as I was putting Caleb to bed.....he asked if I would snuggle with him. Seems like a sweet request. Well, you have to really know this child to know he doesn't "snuggle." He was asking that because he didn't want me to leave. His top bunk buddy wasn't there. (sleeping in our room) Instead of snuggling....I began singing a song to him. One that I sang to all 3 of my kids when they were little. After I finished, he asked "what does 'I love you' mean?" ha Again, I knew this child had a masterminding scheme to get me to stay longer. I sat and thought. And honestly found it difficult to just spout off an answer. Finally, I said, "Caleb, it means I am SO thankful that God gave you to me." That was a suffice enough answer apparently because he said "ok" and rolled over. But, it wasn't for me. I sat staring at this child and was overcome with a thought. When I found out I was pregnant with Caleb, I honestly was devastated. I had a boy and a girl....and our family was complete. So I thought. It took several months for me to fully grasp that this was going to happen whether I was on board with it or not. 3 weeks after Caleb came into this world, my family was ripped apart, turned upside down, and the suffocating "earthquake" that followed, was almost 'too much.' However, it was in those times...the darkest moments, that little baby (clueless to our trial) brought SUCH light! God knew. His timing was absolutely 100% perfect. I couldn't see how this 3rd pregnancy at age 36 could possibly be a "good thing." It was a HARD 9 months, and I couldn't see beyond the day to day. I couldn't see the big picture.

That's what I was reminded of talking to Caleb tonight. I don't like what Caed is going through. I can't see how there possibly could be "good" brought from it. (even though I witnessed first hand how HE did 3 years ago.....oh! how quickly we forget and doubt) All I have to do is look at Caleb. That little firecracker is a reminder of how HE KNOWS WHAT HE IS DOING....We are not supposed to understand it all. We are not supposed to figure it out ourselves and "fix it." It's ok to ask questions. It's ok to cry out to Him! To BEG Him to stop the pain... He will. In His time, and in His ways.

HE makes beautiful things...out of dust.

Perspective

2011-06-17T23:04:00.006-05:00

Quite honestly since I discovered Facebook, my blogging days are few and far between. I updated several times the past few days with everything going on with Caed, but I do know several of my friends and family members are not on fb...so I apologize.

Yesterday's "bowel prep" was excruciating....as usual. Caed was super excited to learn he could eat Popsicles for breakfast and as often as he wanted throughout the day. But, of course by 10am....he was already fed up with Jello, chicken broth, apple sauce, AND Popsicles! It was a long day for poor Caed, but we eventually got through it.

This morning we got to the hospital bright and early....went through the normal admission procedures, and Caed honestly did wonderful. In his mind, we were coming for "one picture." I didn't have the heart to tell him the truth. And felt the less he knew, the better off he would be. Everything was going as planned...until the anesthesiologist (which we had many times before and LOVED!) came in and started telling Caed in detail what was fixing to happen. Caed's eyes suddenly filled with absolute terror! Although he was scared to death, our brave boy never shed a tear the whole time at the hospital. Obviously watching your child as they "go under" is never fun, but we had complete confidence in our GI doc and the team that was with him. I was reminded today HOW MUCH I love that Dr. H always has Christian music playing while the procedure is taking place. HUGE bonus points with Mom & Dad!

Every time Caed has had a scope (upper), the GI docs always come out laughing and each begin by saying the same thing: "Why didn't you remind us about that stomach?!?" (it was twisted up in the initial volvulus and honestly reminds me of the silhouette of a Thanksgiving turkey) It is always very difficult to move the endoscope through. But, with God's hand....Dr. H was finally able to get it.

Overall, the results looked very "normal." We are however still awaiting pathology results on several biopsies taken. There was one problem area found.....a pretty good sized hiatus hernia. This most definitely could be the cause of the nightly pain Caed has been experiencing, but....unsure until we get all results back.

Caed and I will fly out for NE on Monday morning and meet with the IRP Team on Tues. Remember we had told Caed (long ago) that this trip to NE would be super easy. Just blood draws and dr. visit. Todd and I felt sick these past 2 weeks thinking that would not be the case as Caed would have to have the "full meal deal." Praise God....we got everything done here at home (which will be sent on to NE), and now Caed's UNMC visit can still remain "easy."

We feel very relieved to have this particular test out of the way, and also for a possible answer to his pain issues. However...there is still some anxiety in my heart. When will I ever learn? That combination is always disastrous. I am trying desperately to think we will just treat it with some kind of drug....prop his pillows up every night...watch what he eats in the evenings and what time he eats....and on and on. I KNOW this is probably very silly. So many of our friends are fighting MUCH worse things than a hernia. I don't want to sound petty. But, I also know how much pain my son has been in the past several weeks. It was absolutely awful to watch. He is 7. Will he have to live (deal) with it for the rest of his life? Again, I know.....so what? Lots of kids have to deal with 100x that every day of their life. I guess the part that got me was hearing that a surgical fix is out of the question for Caed....considering his bowel. Not that I am wanting to rush him into any surgery, it's just the reality of this syndrome. Don't mess with it (bowel) unless absolutely necessary.

I will stop my Mama-sulking now.....go on to bed....and be thankful. Thankful all 3 of my kiddos are asleep in their beds. Thankful for the last 2 pain-free nights. Thankful Caed will (Lord willing) be at a swimming party tomorrow afternoon jumping and splashing and laughing....and doing "flip-twists" off the board. I have been reminded unfortunately of hospital life this week. Just the few short hours we spent in various parts, brought back a flood of emotions and memories. I'm afraid I got comfortable these last couple of years. Comfortable in the day to day grind....going and doing....running in circles trying to keep up. It just takes one episode. This minor "setback" we've experienced the past month has helped put things in perspective again.

Gosh, I love my little boy! Just trying to put Caed into words....well, it's pretty much impossible. He's special. He's unique. He somehow tugs at people's hearts, and he's been kept here for a reason. I could probably name you 1000 of them. Although, I can't help but think there's more. Something bigger. Something I can't even wrap my finite brain around.

Caed, you WILL get through these current issues. And Lord willing....HE will continue pulling you through the many, many more that will probably follow you. But, you are strong and brave and remember....the ONE who holds you in His hands....is faithful and sovereign and wise and good. Whom then shall we fear? He will never let go.......

Looming questions...

2011-06-12T23:33:00.003-05:00

Friday night Caed went the whole night (HOOKED UP...even!) without a single pain spell. First time in over a week. We were SO encouraged, and so thankful for all of you praying on his behalf. This morning, however....he awoke about 5:30 whimpering and crying out for us. We went through our normal routine, and after about 10 minutes, he was back in bed. It wasn't 30 minutes later, we heard him crying again. This pattern continued (like clock work....every 1/2 hour) until around 10:00a. Todd and I were completely stumped.....and of course distraught. He then had a couple more spells throughout the day. Overall, however, it wasn't too bad. (we've certainly had worse!) He made himself a pallet right beside our bed tonight....and we decided not to do feedings. His little gut definitely needs a break and his body needs REST! We will be in touch with Nebraska obviously tomorrow to see what they think. His sbs is scheduled for Thurs. here at Covenant. I'm assuming we will try to wait that out, considering he does ok between now and then.

SO many thoughts are running through my head. Most of which I am trying to ignore. (coming from satan) It's almost funny however, the verses I am coming across or the songs that "by chance" are coming on the radio. A couple in particular I like to call "Caed's songs." They are by David Crowder and his CD was in our car the day/week all this first happened to Caed 3 yrs ago. These songs hadn't made it to radio yet...but they were played over and over and over as I would sit in the parking garage of the hospital (hitting the repeat button).....desperately trying to pull myself together before going in to see Caed each morning. In fact, not sure I have ever heard them on the radio until just a few weeks ago. I kinda have to laugh at that....it's literally like God is sitting in the passenger seat of my car saying..."I haven't left! I'm still here! And I'm still holding your little boy in my hands. Nothing is happening to him that I am not in control of. This ("setback") may have surprised you....but not ME!"

A "Blessing in Disguise" is truly my main prayer these days. I don't know what on earth is causing this pain in Caed. And WHY now? He has been as "normal" as can be for so long. He's one of the "healthy ones"....according to the IRP Team. What is different? What did I do that may have caused this? The answer to these questions continues to be nothing. We desperately want answers, but the means by which they will come.....not so much. Our trip to UNMC this summer was supposed to be easy. Caed was doing SO well....they didn't see the need in exposing him to any more radiation (through an sbs) than absolutely necessary. We had told Caed this (several months ago), and he remembered. Recently, he asked again, "...so when we go to NE, all we have to do is blood draw and talk?" YES Caed! That's IT! Then, we can go to the zoo and do all those fun things you love so much in Omaha. ......my heart breaks for him now! Caed is almost 8 yrs. old. It's been a long time since he has had to do a lot of the "harder" tests. 3 years ago, we were 100% immersed in everything hospital life offered. Those "tough tests" came weekly....if not daily for MANY months. Now....we have experienced a very healthy span of about 2 years. This is a learning experience for us.....as well as Caed. These tests will come again....and again.....and again during his lifetime. I believe he will have those "healthy seasons" and then naturally have bouts of short gut issues. I sat thinking about his future wife tonight. (bless her dear soul...haha!) But the fact that she will have to learn SBS. She will one day (Lord willing) be the one that is with him during the x-rays, scopes, etc..... I KNOW the Lord did a miracle in Caed's little body! No one will argue that fact. But...he still has only a fraction of his small bowel left. Anatomically speaking......he will have "issues" the rest of his life.

What seems scary to me now contemplating the possible source(s) of the pain, may actually be God's way of showing us something incredible! Perhaps by uncovering some great blessing..... I don't know. I honestly have NO idea how the next few weeks are going to play out. (thank God!) Will it be an easy fix with some ABX for bacterial overgrowth? Or will, dare we say....surgery be needed? There is only ONE person who knows the answers to those questions, therefore I desperately need to stop trying. We need to take it one day (night) at a time. Count our blessings....they are as many as the stars, and ultimately TRUST in the One who holds it all together!

As the song says....."He ALWAYS comes through!!!"

Reminder....

2011-06-09T21:45:00.002-05:00

Today was a tough day for me. I was unfortunately reminded that Caed has a chronic condition. It will never go away. Although I am very much aware of this each night while hooking him up, the "normalcy " of his life is quite powerful. Since moving here to Idalou, I have had the pleasure of making many new friends. I have also had opportunities to tell "Caed's story" to people who did not know us 3 years ago. They are blown away. It is a complete shock to them because of how Caed just blends in with all the other 7-8 yr. old boys. He is just like them in every way.....except he gets hooked up to a machine each night and has a button on top of his abdomen.

Caed has been having pain spasms sporadically the past month. However, lately they have surfaced ONLY at night....and ONLY when he is being tube fed. It is so confusing to us. Any possible causes just don't add up in our heads. After speaking to NE most of the afternoon today, it was finally decided that Caed needs the "full meal deal." (scope, barium enema, and short bowel series) Then, the dreaded "S" word was used. If his bowel is dilated, there might be a need for the STEP procedure (bowel lengthening surgery!). At that point, I honestly just lost it. I guess God knew it had been awhile since my last good cry...and I was due for another one. It has been 3 years since his last surgery, and I would really like to keep it that way.

In the morning, we will go have an xray and see our local GI doc. (the one that was with us from the very beginning) Afterwards, we will get in touch with NE, let them know what Dr. H thought, and then schedule a time for us to head on up (early) to Omaha. Our plan to combine medical and vacation again this summer is probably out the window.

Please pray for Caed. Pray for answers. And pray for Todd and I to accept whatever those might be.......

Ahoy!

2011-05-03T22:29:00.005-05:00

The Pirates are in full-swing, and Caed is loving every minute of it! This is his first season here in Idalou, and also his first season to participate in machine pitch. He is doing wonderful! On Saturday, this little guy hit not 1 home run.....but TWO!!!! (in a single game)

SBS speaking....he is doing equally great! We're continuing at 500mls of feeds over 6 nights/wk. (he loves "Free Fridays!") His next NE apt. will be in July.

playing short stop

hit a Triple!

hoping to make it Home

little brother awaiting next summer for his big debut......t-ball!!!!!!

3 years...

2011-03-01T17:00:00.000-06:00

and counting....

Today marks the 3rd anniversary of Caed's short gut and the trauma-filled year that followed. Thus far, I feel exactly as I did the previous 2. There is such a heaviness in my heart. Although Caed is alive today and thriving (praise GOD!)....the memories from that dark time always seem to surface more now than any other time of the year. March 1st. To be honest.....I hate this day on the calendar. It conjures up such deep pain, and flashes of those first 24...48....72 hours haunt me all day long. As hard as I try to stop them....I cannot.

I know so many of you have your own "dreaded anniversaries" that take their place on the calendar every year. A day that signifies a great loss in your life. You understand. I am only 3 years out from mine, so I cannot truthfully say that it gets better. Maybe it does. Maybe not. "Time heals all wounds." Isn't that the famous saying? I know with the passing of each year the stinging pain does lessen; however, the scar will always be there. I was recently told (in so many words)....to get over it. To "face my fears and move on." I know it was said in love. NOT to hurt me. But, it did. I assure you I have and continue to "face my fears" everyday for the past 3 years. I face it head on every night while hooking my little boy up to a machine. I face it everyday when I have to look at that awful "button" that protrudes out of his abdomen. I face it when I let him be a normal little boy and wrestle with his friends even though I am screaming inside with fear that his G-tube will be ripped out of his stomach. I face my fears every month while watching my son give blood and having to endure test after test in a hospital that we once called "home." I face them as I lug box after heavy box of medical supplies that are delivered to my front porch each month. I face them daily knowing the realization that we came so close....so very close to losing our 4 year old little boy. The events of the past 3 years are now apart of me. You cannot separate the two. There is no "getting over it." And for that, I am thankful. God, in His incredible love and providence has allowed those events (as awful as they were) to shape me. To mold me and teach me things that I would NEVER in a million years have learned otherwise. I can bawl at the drop of a hat when I hear a song that references God as "Healer." It's not just a neat church-y word that I have heard all my life. It is REAL to me now! And it will silence me to the core upon hearing it. I will continue to face my fears. And I will continue to move on....to press forward. However, I cannot move forward without remembering the events of the past. They go hand in hand. Oh, God! May I NEVER EVER forget!!!!

Yes, it's been 3 years. Three incredible years! We celebrated Caleb's 3rd birthday just a few weeks ago. I can't believe how big he has gotten. Where did my baby go? Caed is also doing well. He is happy and "short gut healthy." Reagan has made lots of new friends, got involved with cheer, and of course busy in school. We are all adjusting to our recent move and job transition. I have loved getting back into the classroom and am finally feeling more settled. We are continuing to search for a church home, but know God is in control and will lead us to just the "right one" in His perfect timing. We are very excited and eager for that day to come.

We want to thank SO many of you who have continued to follow Caed's story. It's not over, but oh, we PRAISE GOD for His work in Caed's life. Thank you for also continuing to put up with me. Thank you for simply "listening" to me vent and pour out my heart these past 3 years. I know without a doubt I have not dealt with all of this perfectly. I have made so many mistakes. But, I am learning. Thank you for being patient with me through it all.

We love each of you......and I promise I will try to update the blog better!! I have desperately missed writing. Although I am not promising anything too profound, I will do my best to post pictures (which I LOVE) and more family updates. ;)

Seems like only yesterday....

2011-01-08T15:56:00.002-06:00

....I was up in front of a classroom, making lesson plans, grading papers, and out on the playground. My first week back was very good! I am teaching 2nd grade and absolutely love it. My kids are so sweet and smart and a joy to see everyday. Several of my students are the children of some of my best friends growing up. It's funny to look at them.....makes me feel like I'm in elementary again myself. (not to mention being in the very same building!)

Caed and Reagan probably think it's the coolest. They LOVE coming to my classroom each morning and then again when the bell rings. I see Caed quite a bit throughout the day....which is so fun! Sometimes I get to sneak a quick hug or kiss (while none of his friends are looking, of course.) Reagan LOVES coming to my room after school so she herself can play school. She made report cards and folders for every student in her class.....grabs one of my teacher books and away she goes. Who knows? She may just follow in her mama's footsteps someday.

I am absolutely exhausted and still have so much I need/want to do up at school. Every day this past week I was up there til 5:30-6:00. I am really ready to get to the point where I finally feel "settled." Maybe by May???? ;)

So many of you I know prayed for me this week. THANK YOU very much!!!! I truly had a great first day back and rest of the week. There was a calming I couldn't explain.....

1-1-11

2011-01-01T23:50:00.004-06:00

It's been awhile since I've blogged, and for those of you who follow this one, I apologize. I, too have about 5 blogs (our short gut or bowel transplant friends) that I am completely addicted to reading daily. When they go even a day or two without posting, I get worried and restless. Although I have to remind myself from first hand experience, no news is generally good news.

I assure you I have had plenty of things to write about, just very little time and energy to do so. It's been good for me to take a little "break" from blogging. But oh, how I miss writing! It truly is my escape...

Our time during the Christmas holidays was wonderful. We continued getting more settled into our house and particularly have enjoyed lots of good family time. My sister in law (Megan) and her little girl (Xan) have been here in the states for almost 2 months. We have LOVED it! My brother, Stan, just flew in from China a few days before Christmas. I know he was sure ready to see his girls.

I knew the 2 weeks of Christmas vacation were going to be fun (for the kids), but also a little stressful for me. I begin my new job as a 2nd grade teacher on Monday! I am taking over for a teacher that has moved. A total 100% God-thing!!! Teachers very rarely resign in the middle of the school year. The timing of our move back to Lubbock, Todd's major job change, and then this...was actually very cool to witness. One of those times when you pray about something, and then step by step....you see God slowly laying out all the pieces of the (seemingly impossible) puzzle right before your eyes. But.....even though I know HE is in this, the butterflies in my stomach are still going strong.

The kids are doing great. Caed continues to amaze us. (and scare us at times too.....which will probably be the case forever, I'm afraid) Any little thing with him (physically) always causes Todd and I to go into OVER-analytical mode. But all in all.....he is doing SO well, we have pushed his Dec. clinic visit to March. And possibly, might even try the summer! His weight gain is probably not what it should be, but at least he is maintaining. He continues to be tube fed for about 4.5 hours each night. We thank God for a wonderful, "healthy" 2010!!

I ran across a quote today by John Piper. God promises new troubles (Matt. 6:34), new mercies (Lam. 3:23), and new hope (2 Cor. 4:16) for every day this year.

Upon reading it initially, I didn't like it. Not one bit! What on earth do you mean He promises new TROUBLES? That's not very encouraging to read on this first day of the new year. But, then to read on......there will also be new MERCIES.....and new HOPE too! Not just some time during the year, but EVERY DAY! We live in a sinful, fallen world. Yes, there will be troubles. There will be hard times. There will be tears. There will be those moments we don't think we can carry on. BUT, it doesn't end there. What feelings of complete sorrow and hopelessness if it did.

Thank you God for Your mercies. They are truly new EVERY morning. And thank you that our inner person is being renewed DAY by DAY. Help us to be ready! Ready for those daily "troubles." Help us to be aware when it rears its ugly head so we don't miss the opportunity to turn it around for good. Knowing nothing that You allow into our lives is meant to harm or destroy us. But rather, build us up, make us stronger and ultimately more like Your Son. Lord, we pray for 2011. Both good days and bad will inevitably make up this new year. Thank you in advance for the good. You continue to shower us with blessings which we do not deserve. Help us during the bad. Hold us close, and remind us of Your constant faithfulness.

A new normal

2010-12-12T23:07:00.003-06:00

is what we are desperately attempting to achieve these days. We have officially been in West Texas for 6 weeks, but to be honest I still feel like we're just here "visiting."

This move has been like no other. We packed up our house in Celina and stored it all in our garage. The big furniture and decor was left alone so we could stage our house until we we found somewhere to live here in Idalou. Until then...we would live with my (very gracious) parents. So, on moving day (Oct. 31), we loaded up a 6 ft. trailer with only the essentials. Everything else was left there in Celina. Hence the feeling again that we were just visiting. Anyone walking into our home in Celina would NEVER know we had just moved unless they began opening cabinet or closet doors. For a little over a month we stayed with my parents, living out of boxes and suitcases. 90% of my clothes were still packed in garment boxes in the garage. On more than one occasion, I had to (lovingly...not!) get the cat out of my sweater box. (have I ever mentioned I'm VERY allergic to cat hair???) On another occasion, you would find me sitting on the floor of the garage in front of a giant box in tears! All I wanted was to find some shoes to wear to church. Anything would do...as long as there were no laces and a rubber sole. That month was hard. Hard on everyone involved. It was like visiting for Christmas.....extended 3 more weeks. My parents were awesome!! But, I was stressed. I desperately needed structure...order....and routine. And of course longed for my family to be in our own home again. My parents have a beautiful, very spacious house, but most of our things were crammed into one bedroom (all 5 of us). Our space was FAR from neat and orderly. It was down right chaotic......which only made me more irritable each time I stepped foot inside the door. However, there were also very sweet times (that I wouldn't trade for) those 4 weeks. My sister in law, Megan....and niece Xan were there staying with my parents too during that time. Can you say....the modern day Walton's? ;) They live in China now, so it was extra special getting to spend so much time together.

Finally.....our house here in Idalou was move-in ready! So, the first week of December we headed for Celina with 2 giant moving trucks to get the remainder (bulk) of our belongings. Walking into our house there was surreal. Everything looked normal. Like we had just come home from a long vacation. (funny....had that same experience a couple of years ago....wink, wink) It was all there. In perfect order. Not a stitch out of place. (Ironically what happens when you put your house on the market) Oh, how I MISSED my home!! The memories came flooding in. Every inch....every where I laid my eyes, there was a story. Sweet times. The endless hours Reagan and I spent in that dining room homeschooling. The living room recliner that Caleb and I slept in those first 2 weeks of his life. (little did I know that precious time would be cut far too short) I could hear the crackling of the fireplace and see Caed and Reagan having a picnic of hot chocolate and s'mores in front it. The number of "shows" and dance competitions that took place in the playroom would put America's Got Talent to shame. This was the house in which my daughter would go from everything Princess and pink and Strawberry Shortcake and Hello Kitty.....to a Hannah Montana loving Pre-Tweener. And the drums. This was the house Caed got his very first drum set (age 4)....and 2 more sets bigger and better each time, followed. Our poor neighbors. They were "blessed" I'm sure on more than one occasion (daily!) to hear the deep thumping coming from the east side of the house. The number of youth fellowships and Bible Studies that took place in that living room were too numerous to count. I could still hear the laughter of SO many teenagers through the years that blessed our home by their presence. Their zeal for life made me feel "young" again. (no comment Brad) Then, the tears.....the deep heartfelt concerns and prayers that were uttered by those same zealous students. If only the walls of my living room could talk. Then, there were the painful memories. I can still remember standing in the living room upon hearing the news Todd's dad only had a few short hours to live. This was the house I had to leave for a year while Caed was sick. While vacuuming his room for the last time, I was so overcome with emotions. The memories particularly that stem from that room......are endless. I began to wonder what family would someday (hopefully soon!) come to make their own memories in that house on Doloris Court. What highs and lows would they experience? And would they ever grasp what a life-changing house that was for US?

And now.....here we are again. The 5th home Todd and I have lived in during our married life. There are bittersweet memories associated with each and every one of them. What will God bring to us here on Elm Street? I'm sure it will be both amazing and painful. Junior High dances....teenage girl drama and boy crushes.....make-up.....sharing shoes with Mom - for Reagan? More team sports......"too cool" for his Super Hero toys and holding Mommy's hand in public.....realizing not all shirts and pants go together.....starting a garage band (literally) with his little brother......G-tube GONE!! - for Caed? Breaking his Mommy's heart the 1st day of Kindergarten.....learning to read.....being big and strong enough to finally "fight back" big brother......see a church and not cry "no nursery!!".......play in a real T-ball game......develop into as good a drummer as brother - for Caleb? Oh, the possibilities! They are like the stars.

One day, we will be loading up a moving truck yet again and this house that is now our new home will become empty. I will be sweeping and vacuuming for the last time and sure enough pondering the events that took place under this roof. And we will, yet again set out in search of another new normal.......

God, you know change has always been so hard for me. Setting the cruise control in my comfort zone is what I desire. But, thank you for continuing to stretch me. For blessing me with new and exciting adventures. I pray for this house. For the things that take place within these walls to be pleasing to You! Honestly, I am very apprehensive. I'm downright scared. What dreadful event(s) will take place while we are here? Calm my heart. Remind me of Your unfailing love for me and my family. Your Faithfulness!!! Father, I pray for a spiritual hedge of protection to surround this house. Guard Todd and I's marriage. Defend my children from the spiritual attacks they will face. Strengthen our family as we begin this new chapter in our lives. Let us love one another....encourage one another.....and ENJOY one another. I pray for LOTS of laughter to fill this house and the tears to be minimal. Thank you again for Your clarity in this move. Your hand has been SO evident. We know You have amazing things in store for us.....and we can't wait!

The circle

2010-11-08T21:35:00.017-06:00

28 years ago, a timid, little blonde haired 10 year old girl made her way down a seemingly endless hallway in a new school of a rural Texas town. This was one of her first experiences with a major life change....and she didn't like it one bit. You see, the school she loved was in a "big city" 120 miles just north of this little town. She had lots of wonderful friends there. Ones she had grown up with the first 10 years of her life. Each day they would hop on their bikes (or Big Wheels) in search of new, exciting adventures that awaited them around the neighborhood. They went door to door selling rocks, swam so much in her backyard (her) hair turned green, and built snow forts as high as the roof. She loved her life on Dixon Street. Who wouldn't? Life Savers grew on trees there!! But, on a day that she will never forget her uncle came for "a visit." She remembers him sitting on the couch talking for hours to her mother and daddy. About what? She hadn't the first clue. It was all gibberish to her. But it was something. Something very important. In the weeks to follow, that "something" caused great bitterness in her heart towards her uncle. Her life was fine and good and right before he came! This had to be his fault. She was having to leave her home, her friends, and the life she loved all because of him! (although forgave him very quickly....and is thankful today that "his important talk" with her parents was actually all part of God's wonderful plan for her life!!)

She knew a little bit about this small town she was moving to. She had spent every Christmas and at least one week every summer there since she could remember. Several grandparents, aunts, uncles, and cousins lived there. It was very small. Main Street was literally the "main" street. And apparently all "important matters" of the town were discussed over coffee at the DQ every afternoon at 3 o'clock by the old timers (including her own Granddaddy). There were no stop lights, skating rinks, or movie theaters there. Only one clothing store (which her Grandmother worked at, and she loved to go play in), an old fashioned drug store, a post office, a little grocery store (not the big, fancy kinds she was used to), and of course....the only restaurant......Dairy Queen! No Pizza Inn? No Burger King or McDonalds? No Wonderland? The zoo? What about Fun Fest and Kids Inc? And spending every day in her backyard pool with her friends? There was nothing here in this little town. No matter which direction she looked, flat farmland was as far as her eyes could see. She loved coming to visit all her family there. But, to actually MOVE there, and leave the "big city"? No way!

On that cold, awful day she had to finally go to school, she was so scared. What would it be like? What if everyone stared at her? What if they did things differently here? What if no one talks to her? What if this...? What if that...? Well, she got one thing right. They did stare at her. They did whisper and point. But.....they also talked to her. And included her. And made her laugh....and before long, helped ease the pain of leaving her former school and all the friends she loved. She made NEW friends! And who would have ever thought.....stayed friends with most every single one of them....for 28 long years (and counting!!). They survived the awkward jr. high days together. Started high school together. One by one, got their driver's licenses together. Dated each other. Broke up with each other. And experienced all the ups and downs of high school together. Then, some even became college roommates. Were in each other's weddings. And were there in the waiting rooms together when they first became parents.

When the first day of 4th grade at her new school was over, she walked outside the building and saw her Granddaddy waiting for her. There was an instant calming. Her day had been filled with "news" and "firsts" and "strange faces." When their eyes met, she wanted to run. Run hard and fast. He represented security to her and she desperately needed to feel its warmth on that cold January afternoon. Like a good Granddaddy would do, he drove her straight to DQ Country. (it was 3:00 by the way) He ordered his regular black coffee, and she got an ice cream cone, sure to cure all that ails a sad 10 year old. (and it did!) The weeks turned into months and soon......the little scared blonde headed girl became more outgoing and smiled more and laughed! Oh, did she laugh. She quickly made a NEW best friend (that is still one of her BFF's to this very day!)

God knew. He knew the plans. He knew the timing. He knew all the characters that would have roles in this little's girls' "major life change." He dotted every i...and crossed every t. He had wonderful things that would await her future. You see, not only did she make the best friends ever in this new town, but she made fun memories along the way. She was saved at a GA Camp the summer following her winter move. She was in a small 2A school which allowed her naturally quiet, reserved personality to soar. (she would have been eaten alive in the 5A school she was "supposed to go to.") She quickly became a leader and excelled in school. She was involved in every activity, organization, and sport offered (highly unlikely had she stayed where she was at). She then went on to a wonderful Texas university 10 miles from her little hometown where 4 years later, she met her future husband. After graduation, she went back to that elementary school.....that endless "hallway." She taught along side her former elementary teacher and taught IN her old 5th grade classroom. The memories would flood her mind and cause her to break out in spontaneous laughter remembering the things that happened in that little room....so long ago. (as her students stared back at her in confusion)

Today, almost 28 years later when that little girl first walked that long hallway of her new school, her daughter, same age, same grade hesitantly had to walk that same exact hallway herself. They walked hand in hand as if in slow motion. The Mommy knew what her daughter was feeling. She relived the pain, the fear, the anger. For she herself had to walk the same path 28 years earlier. When they reached the room, the Mommy looked inside and quickly glanced at each face staring back at them. She laughed to herself thinking about the same strange faces she saw long ago, and how each one over time became some of her very best friends. "Forever friends" she calls them.

As the Mommy (and her husband) left the room this morning, her heart became heavy. If she could take the fear and anxiety away from her little girl on this very hard day, she would. But she knew. She knew what the future would likely hold for her daughter there in that school....in that small town. Just give it time. Give it a few days. A few weeks. And by the end of the year, she will surely be smiling just as her Mommy did for her 4th grade class picture. Big. Genuine. Loving her new life and all that God brought to her (including her most favorite pair of off-white knickers!)

When the dismissal bell rang today, the daughter stood just outside the same big green doors her Mommy did on her first day. Their eyes met over a crowded hallway. There was comfort. There was peace. And of course....some good ole' DQ Country ice cream followed! This time, the (great) Granddaddy wasn't there (but, oh, wouldn't he have LOVED to have been!). Instead, his wife, Great-Grandmother Mitchell was there.....who by the way, started Idalou Schools back in the 1930's in the...........you guessed it! 4th grade.

Ironic how life turns out sometimes. You travel long and hard...only to find the path God lay out for you wasn't straightforward....but rather one giant circle!

Caed (1st grade, age 7)..........and Reagan (4th grade, age 10)....the same as her Mommy when she moved to Idalou, and the 4th generation to attend Idalou Schools!

Our new life has begun....

2010-11-05T08:16:00.004-05:00

...and we are ALL settled! NOT!

We are, however, official residents of the big city of Idalou! Honestly, I just feel as though we are here visiting for the holidays. (only minus the tree and stockings) It is a very surreal feeling. One that I have dreamed about and prayed for a very long time, but now, seems it's just that. A dream. Our house in Celina went on the market on Monday....and Todd and I spent an evening this week looking at all the pics on line via our realty company. I hated it. That is MY HOME!!!! Why are there pictures of every room for the whole world to see? In that instant, I so deeply wanted to go back and resume our life the way it was. (regardless of my sentimental feelings....please pray with us for that house to sell quickly!) HOWEVER....there also is a corner of my heart that is genuinely excited about our "new life!" We are still living out of our suitcases (or going back and forth to the garage to dig for whatever we need). It's NOT ideal....but it's where the Lord has us for a short time period. Physically, my body is completely 100% exhausted. Don't think I've had a good night's sleep in over a month....my neck and back ache constantly. Todd and I worked 14+ hr. days the 2 weeks before the move trying to pack and also get the house as ready as possible to put on the market. Not to mention the emotional tiredness of all the good-byes and all the "new" to get used to. (refer to previous post as a reminder of my deep dislike to change!) :) I TRY to keep reminding myself to remain positive....God has great life lessons to be learned here during this interim phase....and to TRUST!

Beginning Monday, the kids will officially be enrolled at Idalou Elementary School. They are both excited and scared. Each of them know a friend personally in their grade/class, so that will help tremendously. Todd also starts his new job on Tuesday. He already visited the store and went to eat lunch with the rest of the management team yesterday. He is also both excited and a little nervous (been 10 years). SO MANY changes ahead for each one of us, but ones we are 100% confident the Lord has brought to us.

side note and prayer request: PLEASE pray with us for the insurance change to go smoothly. There is possibly a 6-12 month waiting period for Caed with his pre-existing condition. NOT GOOD!!! I want to cry. I don't understand at all!!!! He has monthly needs that reach 1000's of dollars (without insurance). However, we know this is not a little detail God forgot about. He knows. And HE has it all under control. Once again, I think this is one of those areas where He is calling us to TRUST (when we can't see the outcome of a seemingly "hopeless" situation).

(fun story coming on Monday....stay tuned!) ;)

The end of an era

2010-10-13T21:22:00.003-05:00

My heart hurts tonight. No, actually it down right is broken. Tonight was Todd's last Wed. night. Not just here in Celina, but as a youth minister. It's surreal. He has delivered a message every Wed. night for the last 13 years. That's nearly 700 sermons. (not to mention SS lessons back in the day when he taught that too....and of course Bible Studies on Sun. nights) I can't begin to describe what I felt listening to him for the "last time." The last game....the last song....the last word of encouragement. It was absolute torture for me. In that moment, with tears streaming down my face...I wanted to stop it all. The good-byes, the packing, the new life that awaits us. I didn't want this night to end. As the last amen was voiced.....I reluctantly looked up and saw "my girls!" There were no words that could be said...only buckets of tears shed.

Have I ever mentioned how much I dislike change? I avoid it at all costs, and when it comes knocking on my door, I generally pull the shade and pretend I'm not home. It doesn't go away. The banging just continues on and on and on, until I finally am forced to let it in and STAY! Experience, however has taught me that change is not always in the form of an evil stranger. Once I stop fighting it, I soon realize the so called "poison apple" is actually bountiful blessings in disguise.

To live this life without change is impossible. It's just the way God designed it. Sometimes it is welcomed and exciting and full of new possibilities. Other times it is dreaded and fought and difficult to surrender to. Either way, I believe God uses it to grow us. To hinder our nature that so desires complacency. When welcomed with a trusting heart, God blesses.

I know in reality tonight isn't "the end." It's still there. It's how He created Todd and I. Although our job titles will change very soon and being paid to "minister" will stop....I know beyond a shadow of a doubt we will not! Our ministry is simply experiencing a face lift. It's scary. It's exciting. It's like jumping out of an airplane. (knowing our parachute will open, of course). Our hearts are racing....adrenaline pumping....but we know after the initial step, we will be soaring and laughing and begging to do it all over again!

To our FBC students:
Just as tonight showed....words are inadequate to let you know what these past 4 years have meant to us. You guys are special, and you know that. It's what makes Celina...Celina. We wouldn't trade our time here with you all for anything!! Continue doing what you're doing. God has SUCH amazing things in store for you as a group and also individually. Press hard into HIM! We love you!!!!

BIG changes in the Hollingsworth Home

2010-10-03T22:03:00.004-05:00

It is official. We will be stepping out of full-time ministry and heading back home within a few short weeks. This is something that Todd and I have prayed about for almost 2 years. We never jump into anything haphazardly....in fact, you've never met two more analytical people than us. However, ministry doors continued to close, but going back to Lubbock opened very quickly (and clearly). We are equally sad, excited, nervous, and relieved. Lubbock/Idalou is home to Todd and I. We were both raised on the good 'ole South Plains and our families still reside there. So many friends that we have had growing up also are there. However....we are leaving behind a wonderful, supportive church/community called Celina. We don't have the words to express how DEEPLY we love and appreciate everything you have done for us the past 4 years. You welcomed us, helped us with any need that arose, and quickly became family. During the past 2 years in dealing with Caed and his sickness....you overwhelmed us!!!!!! God knew exactly where we needed to be and what special church would step up and minister to us during the hardest time in our lives. We will NEVER forget that! To our students - you make this job worthwhile. Your passion and love for life are contagious. We have loved every minute of leading you and walking beside you through your fun-filled, exciting, stressful high school and jr. high days. We look forward to watching you grow up, move on to college and someday start your own families! (yes, it will happen much sooner than you think!) The best part of youth ministry is seeing your students all grown up and living out their faith ON THEIR OWN! We look forward with great anticipation at how the Lord is going to use each one of you in the future. We will miss you guys SO MUCH!!!!

Todd will go back to work for United (Market Street) in Nov. He has about 12 yrs. previous experience with this company and is excited to step back into management. The kids will go to school out at Idalou, and I hope to go back to teaching at the Elem level. The life that Todd and I had prior to getting into vocational ministry seems to have made a full circle. Funny how things work out that way. We are very excited.

The kids are handling the news as expected. Todd and I took Reagan and Caed out to eat Friday night, and let the cat out of the bag over a delicious (un-touched) meal at On the Border. Reagan took it really hard. She cried for about 30 minutes....but we finally got her settled down enough to talk through it all. To show her the positive things that await this life-changing move. She began to laugh and could hardly wait to call her cousin/BFF Idalou friend, Bergan. Caed just sat in silence the whole time....staring at his emotionally unstable sister. ;) Finally, he looked up at me with tears in his eyes and asked, "But can I take my drums?" But of course!!! I plan on taking the kids to Idalou this weekend. Celina is out of school on Mon. the 8th, so I will take them up that day to meet their new principal and see the building, etc.... I think that will help with the transition immensely.

Our last Sunday will be Oct. 17, and then we will officially roll out sometime the first of Nov. I am still living in somewhat of a fog, trying to remind myself that this is really happening. Even though there are many uncertainties still in the picture (selling our home, etc...), I know that God is in control. We believe wholeheartedly that He is leading us in this, so trusting Him in the details should be..... easy. (I'm working on this one.)

Lots to do. Head is spinning. Heart is aching....and rejoicing. And trying to be still long enough to sit back and see how (in His perfect timing) HE has led Todd and I to this very point. Pretty amazing ride thus far! Looking forward to how He will use us in the future......

The Biggest Loser

2010-09-25T21:47:00.006-05:00

Caed has consistently been gaining 1/2 lb. every week for the past month. Weight gain is always a plus in short gut world.....but 2 lbs. in 1 month?.....I was afraid if we kept this up, Caed might wind up on his favorite tv show.

We have been in contact with NE, and they aren't too sure this is a "good thing." Well, good in that he is gaining (intestines absorbing). But, concerned in that it's too much - too soon. They sent us a new formula (recipe) in which the k/cals are reduced. We will try that a few weeks and see if there is a change.

Caed's labs this month were good, except he was a little on the dry side. Caed drinks his ORS SO WELL (almost 2 liters/day)!! So, it couldn't be that. However, his stools are straight liquid again, so we are assuming it's coming from that. They also are more concerned with this, so they might switch his formula entirely to EleCare (which many of our gut friends are on). Junior NeoCate can be hard on the gut (or hard to absorb) with some kids. So, it looks like we'll be experimenting several things this month.

This morning, Todd drove to Houston to meet our NZ friend, Hamish, to take him to the Dallas/Texan football game. Many of you have followed Aria's story....and know what an amazing little girl she is! She didn't have 1, but 2 multi-organ transplants, and by God's grace is doing SO well. We are thrilled that Hamish is getting to take this once in a lifetime trip down to Houston. This is his dream....to see them on their home field. We want to thank our parents, Carol and Cordell, Tina and Bridgette, and Kendall for helping us do this for Hamish. I'm certain it will be one of the highlights for him of their time here in the US.

(Go Cowboys!!!) ;)

And the rehab continues...

2010-09-17T16:32:00.004-05:00

We have officially weaned Caed off the formula he has been on these past 2 years. The infant version is broken down and much easier for sbs patients to absorb. However, at our last NE visit, the only concern the docs had was the lack of weight gain. So, after a couple of months weaning....we are now 100% on the Jr. version. The kcal increase has been evident. Caed has gained a whole pound in the last 2 weeks. The only problem we are seeing is his output. His stools are straight liquid again (3x/daily). NE said this is common and sometime when there is a change in formula, it can take awhile for the body to adjust. (or he has some bacterial overgrowth again.) I'm really leaning on the formula being the issue. His labs continue to look good, so we are grateful for that.

It was just a reminder to me that we continue to travel this LONG road of intestinal rehab. Todd and I have had our sights set on Jan (our next NE visit) for the possibility of his tube being removed. Right now, I'm not so sure. (which is ok) Caed continues to do SO WELL!!! It'll happen when it's supposed to. It's hard to see Caed outwardly and not expect that same "normalcy" on the inside. When the doctors first told us 2 1/2 years ago that this was just going to take lots of TIME.....I never in my wildest dreams thought it would be this long! (...and it's still not over). Caed has a chronic condition. It will never go away. But....that g-tube will. Someday. And for me, that will be the indication rehab is finally over.

Please specifically pray that Caed's body will begin absorbing and adjusting to this change.

Here it goes....

2010-08-26T14:05:00.003-05:00

I honestly can't believe I'm writing this post. The Lord began laying it on my heart about 9 months ago, and I have continually pushed the thought away or told him "You're crazy!" But, just like God works, when He wants you to do something....He won't let it go. I have had many dreams about it, think about it many times throughout the course of my day, and have finally run out of excuses. So, here it goes......

I have officially begun writing a BOOK! Oh my....did I really just admit that? The thought alone scares me to my core. And at the same time, I have such peace and excitement that is just waiting to be released. For me....making this official "announcement" is my way of finally letting go. I have held on and pushed this "absurd thought" far away into the deep dark corners of my heart for long enough.

Now, for the big confession. I have absolutely NO idea the first thing involved in trying to write a book! I have told you before how much I loathe the whole writing-process-thing we learned in school. I'm fairly certain I consistently break all the rules when it comes to writing. I have no idea how am I going to do this....when I will possibly find the time to do it.....nor what the end result will look like. However, once again, I have a peace that is unexplainable.

Just asking for prayer as I embark on this new adventure, and for you to hold me accountable.

(The Lord gave me the title to the book this past spring when a good friend of mine was battling breast cancer. I will save that....but have posted this picture I took as a little hint.)

Love you ALL! I thank many of you and your perpetual "nagging" over the course of the last 2 years. I believe the Lord has used it to speak to me and get me to take this giant leap of faith.

Our stone

2010-08-15T13:36:00.014-05:00

Today is Caed's 7th birthday. As usual it's been a day filled with much joy and celebration, but also great reflection.

I received a comment on my Facebook page today that completely sums up what has been on my heart. (thank you Greg!)

Life is hard. Period. We will all have moments in our lives of peace and joy and prosperity. When all seems right in the world. Then, out of nowhere, those wilderness experiences blindside us and our "perfect" world takes a U-turn. When it rains, it pours, right? It's those times when we question God. Where are You? Why have You allowed this? If You were really a loving God, then______! But, God being God, He doesn't leave us in that place forever. He IS loving and faithful, and He leads us into the valleys for a specific appointed purpose. Just for US! Yes, it's painful. Yes, we will initially fight it with every fiber of our being. But, if we can only trust and hold fast to HIM.....He will in His prefect timing, lead us back to the mountain top stronger than before. I believe our lives are like a roller coaster. Up and down....up and down...over and over and over. Sometimes we may have many years of favor and blessing before the darkness hits again, or sometimes we may feel we are having to live in the valley for FAR TOO LONG and plead with Him for mercy and deliverance.

Right now....I feel that my family (specifically the health of Caed) is high upon the mountain. We suffered for what seemed like an eternity, and now we are seeing the light. The glorious light of a normal family of 5.....enjoying life! I obviously cannot foresee the future, and have NO idea what lies ahead for each one of us. But, I DO know that we are not "out of the woods." Hard times will definitely strike again in some unknown way. Instead of living in fear, we must cling to His past faithfulness!

I am reminded of the story in Joshua where the nation of Israel crossed the Jordan. The Lord told the people to gather 12 stones from the riverbed and set them at the place where they would stay. The reason? So that when future generations saw those stones and asked what they meant, they could retell the story of His amazing faithfulness so many years before and stand as a memorial to the people of Israel forever!

We have a stone. It's roughly 4 ft. tall and weighs approx. 45 lbs. It has a contagious laugh and is FULL of life. Although hooked to a machine, it is sleeping soundly right now under our very own roof. It is likely dreaming of football, baseball, being the star drummer in a band, or fighting off evil with his super hero friends. It is a reminder to us of a God who still performs miracles. Of a God who never let us go as we faced the most frightening days and months we had ever experienced. This God lavished us in an ocean of MERCY. He held every tear we ever cried. And answered our pleas for healing. He didn't have to. He would be perfectly just and holy and loving and faithful and merciful had we buried Caed in 2008. Yet we undeservingly were spared.

To this day I still carry a photograph (of my stone) in my Bible as a reminder of this very thing.

When times get hard, when things happen that we don't understand, or when we plea with Him for deliverance.......all we have to do is look no further than our stone. It is a reminder to Todd and I of a God who IS faithful! Who IS in control! Who loves us enough to not only hear our prayers but answer them! And who will carry us ever so tightly all the days of our life....whether high upon the mountain, in the deepest cavern, or simply wandering the desert.

And surely I am with you always, to the very end of the age. (Matt. 28:20)

Caed,
We love you more than words could ever describe! You are our joy! And we count it an awesome privilege to be your parents. May the Lord continue His favor on your life and may you grow to know Him as your Savior and Lord. We pray God will use you, your infectious personality, and the gifts He's given you to honor HIM!!! You have a story to tell................so do it with boldness and the way only "The Caed-Man" can!!!

Two and a half years.....

2010-07-28T18:40:00.004-05:00

Sure wish my readers consisted of short gut parents only today. I have SUCH amazing news, and would love to give you all the exciting 'intestinal details.' However....I realize that most of you reading this don't have poop journals for your 7 yr. old kids, nor do you take pictures and text them to your husband. haha!! Therefore I will spare you the details. Just know we had an extraordinary praise today. One that hasn't been seen for 2 1/2 YEARS! And one we thought we would never see....this side of Short Gut Life!

Questions...

2010-07-20T00:53:00.007-05:00

Why do You allow these young children to suffer and even die? And why do You choose to mercifully spare others?

These questions along with about 100 more flooded my soul this past week. We took our youth group back to Student Life in Orange Beach, AL. It was incredible!!! I honestly don't have adequate words to describe how AWESOME this camp is! However, one afternoon I was catching up on my email, etc....and came across some very grim news concerning 2 of our UNMC "bowel friends." I have been following both of their blogs for almost 2 years, and met both girls and their beautiful mommies while in Omaha. Currently they are in a desperate need for miracles. Things are looking so bad. It absolutely breaks my heart to read about them and what their families are going through.

That particular night at worship I felt so heavy. The presence of God had fallen hard on that building, and I cried out to Him. Caed (and Reagan) had both fallen asleep in the chairs completely oblivious to everything going on in the room. I fell to my knees....held Caed in my arms and sobbed my eyes out. WHY GOD???? Why did you choose to have mercy on me? Why did You allow Caed to live...and thrive? I am SO undeserving and I'm sorry for being unfaithful to You. There are SO many who do not make it. SO many mommies and daddies who have to bury their babies. WHY???

I still do not fully know the answers to these burning questions. I think they will always haunt me somehow. And yet for the first time since Caed's illness (and recovery), I became SO overwhelmed at His mercy. To REALLY get it! In the last 2 years, I have been surrounded by other moms who have walked a similar road with their child and those ornery intestines. And yet....one after the other, are going through MUCH more pain and hurt than I could ever dream. Caed is a miracle. A 100% living, breathing, running, drum-playing MIRACLE!!!! I believe that with all my heart. And yet this same heart hurts so badly for my dear friends. Why God? Why are You allowing all this to happen?

It will cut you to the core. Once you get it. It's the reality of the brevity of life. To go through a trauma so big....so real....so awful and ugly. It shows us we are not invincible. Not bulletproof. We are not guaranteed tomorrow...even though we somehow think God owes it to us. I hate it! It hurts and literally make me sick to my stomach to think about. But.....I know it also is a gift. To not take life and each day He gives us for granted. To learn to LIVE! To LAUGH! To LOVE! To glorify Him and ENJOY Him forever.........and be overwhelmed by our Father God!

I know HE is GOOD.....and HIS plans are PERFECT.

7500 miles

2010-07-04T23:55:00.012-05:00

...is a rough estimation between Texas and New Zealand. Why on earth is that information relevant? Because it is proof yet again of the wonderful Providence of God.

Meet the MacDonald family. Hamish and Anita....and their daughter Aria (4) and son Asher (2). I have mentioned them before in my blog and have asked for prayer for Aria on numerous occasions. So many of you now follow her story and faithfully lift this family up in prayer.

Now to continue with the story that first took place over a year ago....

I sat down one day to catch up on some email and opened one up from a "stranger." This is actually not all that unusual these days. Ever since Caed's illness, I have "met" so many wonderful families all across the US. We share a bond that is chronically ill children. However, this email was different some how. It was from a woman on the other side of the globe with a very ill little girl who came across Caed's blog from googling "bowel" and "University of Nebraska Medical Center." (wow!) The emails which were exchanged those first few days were full of lots of tears (between the both of us). There was an instant connection....and one that only the God of this universe could put in motion. For almost a year, we corresponded via computer (email and Facebook). And finally....we were able to meet face to face this past week in Omaha. There was a very odd feeling when I first saw her. Like we were old friends who just hadn't seen each other in a long time. haha We were able to spend several days together and ask one another all kinds of questions and of course laugh at the extremities of our accents. You can guess who had the most beautiful one! (hint....not the hick from Texas) However, Todd and I are proud that of all the restaurants we could have taken her....we chose DQ! ha (can you get any more redneck?)

The kids also had lots of fun together. Asher and Caleb hit it off (only 2 months apart), and Caed was his usual "entertaining" self, which Asher LOVED! We told them we can rent Caed out if they ever needed it. ;)

Although, one thing was always missing during our times together.....Asher's beautiful big sister, Aria.

Getting to finally see her sweet face in person was such a joy! We have prayed SO HARD for Aria particularly this year, and to see her and SEE God's hand was truly amazing. In a nut shell....the MacDonald family left their home in NZ, and came to UNMC to save their daughter's life. A multi-organ transplant was their only hope. However, Aria has not only had 1, but now 2 M/O transplants! She is a true miracle. She is so strong and brave and an inspiration to thousands of people all over the world who have the privilege of praying for her. Aria still has a long way to go, but is making progress daily. THANK YOU GOD!!!!

One thing is for sure. This was not a chance meeting between the Hollingsworth and MacDonald families. It wasn't by accident or coincidence. It was only by the hand of God who holds the whole world in His hands. I absolutely HATE the reasons why we are connected. If I could change those, I would. And yet....I'm thankful that yet again God shows me how He is always bringing beauty from the ashes, in different forms and different ways.

We love you Anita and Hamish. You guys are in our thoughts and PRAYERS daily!!!!! You are both truly amazing people, and we are privileged to now call you friends.

Results

2010-06-29T21:43:00.004-05:00

Today started early, and as usual we were the first to arrive down in radiology. The team seemed very optimistic as the barium moved its way through fairly quickly. However....I warned them (or should I say 'reminded' them of every other sbs Caed has ever had. He likes to take his time....get to know all the rad. staff and see them through to the end of the day. ;)) I did however pray that this time would be different. After hour #3....and the frustrated looks on their faces, I knew it wouldn't. Caed was a trooper though. Total sbs time today = 6.5 hrs

We finally were allowed a little over an hour to put a halt on the xrays, and go to our clinic appointment. Caed was SO excited to see his nurses and doctors. He loves them! In a nut shell....the visit was very positive. They said if they were just looking at his labs (or at least the ones that had come back), they would think they were those of a "normal" child. Which anyone who has been around Caed would probably 100% agree with. The plan of action now is to change his current formula to one that is higher in calories. (Neocate Junior) We will stay at the same rate and dosage. We will also cut one medication, and watch to see if there are any effects. If not...we will then slowly try to wean the Imodium. Their only "concern" is his weight. He hasn't gained like they wanted him to. Hopefully the new (stronger) formula will help. We will come back in 6 months.....assess everything, and then, MAYBE then...we can remove the tube!

We returned back down to radiology after our appointment and had a couple more x rays. Finally, they felt the barium had reached the finish line (his colon)! We asked the docs about the length of time for Caed's sbs, and they said they are not concerned with it. They said the horrid "s-word!" (stricture) But, said if he had one, that wouldn't necessarily be a bad thing right now. (slows everything down allowing for more absorption time) He doesn't have one however......thank you Jesus, but said by it taking so long...that is actually a good thing. OK...we'll take it! I guess with Caed's bowel length everyone (including radiologist) always assume it will go quick. Yet another sign of God's hand!

We weren't able to see Dr. M today (he was in a transplant), but saw another dr. we knew. This guy was great....no complaints whatsoever. BUT...he made some simple comments that really struck something in me.

"We just shake our heads when we look at Caed. There is no real medical answer as to how he is doing SO WELL considering the amount of bowel he has left. We would love to ask you guys what you have been doing, so we can tell other IRP patients. He just isn't the 'norm.'"

I sat there quietly listening, but later wished I would have stood up and shouted "I KNOW the answer!!!! I know WHY he is doing so well. It is only by the grace and mercy of our God."

I haven't been able to get his words out of my head. Those of us around Caed take his normalcy for granted. We forget what an incredible MIRACLE he is! And I think I am as guilty as anyone for giving the credit to his great doctors in Lubbock and the IRP here at UNMC. I guess it just humbles me once again when I hear the medical professionals say that #1...they didn't expect him to survive the volvulus, and #2....how they don't understand how he dodged the inevitable multi-organ transplant and is doing SO WELL today (only 2 years later).

Thank you Lord for this trip to NE. Thank you for the positive results from the doctors and tests. But, especially for gently reminding me of YOUR ABSOLUTE HEALING POWER! YOU....oh God....are our Deliverer.

Nebraska Summer

2010-06-28T10:47:00.005-05:00

(Caed's new summer do......he goes by the name of "Hawk" now) :)

Well, this is a first for us...spending time in NE during the hot summer. We were blown away by the humidity. Definitely didn't expect that. We decided to combine a little family "vacation" with Caed's dr. appts. this time, since Reagan has been begging us to let her come back. And the last time Caleb was here, he was only 6 mo. old.

The testing will start this week. Caed has been doing WONDERFUL (ever since we got back on all feeds and meds in March)! However, currently he is only on 400ml (120/hr) for 6 nights. We allow him to have "free Fridays" where he can go to bed tube free! I think in the intestinal rehab world, that is virtually nothing. So, we are very curious to hear what Dr. M has to say. We are, however expecting Caed to stay on tube feeds through the summer at least (due to the hot summers in Texas and the high probability of dehydration). But....will possibly be tube FREE by Sept!

So far, we have had a WONDERFUL time here in NE. So good, in fact...it's deserving of its very own post! Many of you have prayed for Aria and her parents Anita & Hamish from New Zealand. Well, yesterday after a very long year, we finally met FACE to FACE!! I will write about it in detail in a few days.....

Thanks for your prayers. So far, so good. Tomorrow Caed will have what he grudgingly likes to call the "all day tummy pictures." It's a small bowel series, and should last 1-2 hours. For Caed, we generally are the first radiology patient of the day and then are the last to leave (6-7 hr. x ray). It's not painful at all (just a little discomfort for Caed as the barium makes its way through), but just VERY LONG and boring for a nearly 7 yr. old boy. Please just pray specifically for this test. It always is very nerve racking for Todd and I. Outwardly Caed is a 100% normal little boy. This test always reminds us otherwise. Just pray for no dilated loops in the bowel or any other areas that look "suspicious."

Will post tomorrow after we speak with the drs.

Pre-Teen camp

2010-06-13T00:48:00.003-05:00

Reagan attended her very 1st church camp this past week (Pre-Teen Camp at Mt. Lebanon), and I went along as one of the sponsors. She loved it!!! But....boy are we wiped out!

Thank you Grammy for coming and staying here for a week. We know Caed and Caleb were quite a handful....but we appreciate and love you SO VERY MUCH for helping us out!!

1st year.....down!

2010-06-03T12:28:00.007-05:00

Typically you find Mommy's crying the 1st day of Kindergarten. Me, on the other hand, never shed a tear that day. However, today....the last day.....I sobbed like a baby walking out of that school! It had absolutely nothing to do with Caed....just me feeling like I was losing a friend.

Mrs. Smith. Where do I even begin? The Lord brought us together 3 yrs. ago...as we both had something the other one needed. I needed some extra income and she needed someone to watch her 3 month old baby girl. A friendship quickly developed and I knew right away she was special. We had only lived in Celina a few months and I didn't have many friends at the time. She was literally a God-send!! She walked through Caed's ordeal with us....supporting him the entire time. Last year, when Todd and I decided to send the kids to public school, I was scared to death for Caed. He hadn't been out of my sight (medically) for over a year. To say sending him away for 7 hrs. a day was hard, would be quite the understatement. However, when I found out he would be in Anna's class.....my heart was instantly eased. She knew Caed.....PRE-sickness! She knew everything he had been through, and I was certain she really cared for him and would "look out" for him. And she did...

I began watching her 2 kids a few days a week the last month of school. What fun to see how that tiny little baby had grown and to get to know her "new" brother (which is Caleb's age). Probably the main reason for my tears today was because Mrs. Smith is moving. We are SO excited for her family....and yet grieve our loss.

I could not have asked for a better 1st teacher for Caed. Not only was she a dear friend, but an excellent teacher. Caed was as disinterested in anything school-related as you could get, but now he has a love for learning and an excitement that he certainly did not have a yr. ago.

Thank you Anna! I know our friendship is not over.....just taking on a different feel. I look forward to hearing all the exciting things that will take place in your new home, and watch those "babies" grow up!!! Thank you for EVERYTHING!

Reagan also did a great job this year in 3rd!! Her year was little bit different. Since she had been home schooled from Kinder to 2nd....this was a BIG transition for her! Everyone else in her class had sat in desks, carried backpacks, ate lunch in a cafeteria, walked the hallways, or raised their hand in class. They knew "the system." It was like an 8 yr. old experiencing the first day of Kindergarten. She was excited, yet scared to death. It took a few months to work through all of the 'labeling' she endured, but she came through it like a pro! She thrived.....made all A's and lots of friends...LOVED her teachers....and we are so thankful for God's protection and care over her this past school year.

The whole reason for sending my kids to school this past year was 100% for me. Physically and emotionally I had reached my limit after getting off the ride of my life. I'm no psychiatrist, but I'm fairly convinced I was suffering from some Post Traumatic Stress as well. I desperately needed some time to heal....time to rest.....and time to re-bond with the baby I lost. And that's exactly what we got! This past school year was wonderful for Caleb and I, and I am so grateful to the Lord for providing it. And all the while, knowing that my other 2 'babies' were in safe hands.

Thank you Lord yet again for Your steadfast Faithfulness in the Hollingsworth Home!

Home....RUN!

2010-05-25T07:48:00.007-05:00

Caed officially scored his first (coach-pitch) home run last night! He was so excited.....we were ecstatic! This was his last game of the season and Grandaddy & Nana were here in Celina visiting. Before his game he told me he really wanted to hit a home run for them. His first time up to bat....sure enough he DID IT! Smashed hard right over the 3rd baseman's head. His whole team played wonderful last night.....a great way to end the season.

Caed was asked to play on a summer select team, but Todd and I decided to hold off on that. We will be gone a lot during the summer and also don't want him getting burned out at 6 yrs. old! I continue to be amazed at how far this little boy has come! Who would have ever thought he would be hitting home runs 2 yrs. later? I must admit, I certainly had my doubts. Praise GOD!!

Caed at the pitcher's mound

Reagan also ended her 1st softball season last night as well. She improved SO much over these past 3 months, and has truly learned to love the sport. Can't wait to see how she grows.....

Reagan and her good friend Kyra

.....and Caleb, well, I must say he will probably miss baseball season the most out of the family! He LOVES going to the ballpark!! Can't wait to see this little 'ball of fire' out there on the field one day. One thing is for sure. He will most definitely have 2 GREAT teachers to show him the ropes.

Pray for Aria

2010-05-10T07:55:00.002-05:00

Please keep Aria in your prayers! She is our sweet little New Zealand / Omaha friend. She underwent her 2nd multiple organ transplant yesterday on Mother's Day. So far....she is doing well!! But, has a long road still ahead of her......

GOD IS FAITHFUL!!!!

Kinder Rodeo

2010-05-08T23:24:00.005-05:00

Cowboy Caed

Every good cowboy needs a trusty steed.....

Caed and his 'line dancin'............he really got into it, and had the whole class following his lead.

more Boot Scootin' Boogie

Meet our family.....

2010-05-04T12:58:00.002-05:00

I was online today making plans for Caed's next NE appointment and came across this. I was so excited! This is Caed's primary doctor (Mercer) and also one of his nurse coordinators (Brandi). Everything they said was right on. The IRP is a family unit and they without a doubt make you feel like you are apart of it too! We love these guys....just wanted to share this so you can finally put a face(s) with the name(s).

Toothless in Texas

2010-04-26T08:50:00.003-05:00

Well....that didn't take long!

Caed attended a birthday party yesterday afternoon at a bounce house. Need I say more? When I picked him up, his tooth was "mysteriously" more loose than when I left him. Once we got home, he stayed in the bathroom for awhile, and when he came out.....bingo.....officially toothless.

2010-04-19T17:16:00.003-05:00

Things are going strong in the Hollingsworth Household. We are staying very busy (spending most of our days at the ballpark), and trying to finish well with our first year in public school. Todd and I have been busy coordinating summer schedules and making sure we haven't over-booked certain weeks. Summers are wonderful, but can be awfully busy in the life of a student minister (and his family's!).

Caed had a very eventful day today. He finally lost his 1st (front) tooth! To be honest I always dread this day. I just LOVE those little baby teeth. I told him I wasn't ready for him to start losing them.....and I wanted him to stay little FOREVER!! He looked at me like I had lost my mind. His other front tooth is also very loose, so I suspect we will be spending the summer with an adorable toothless grin that will melt this Mama's heart with every smile! Short Gut speaking.....Caed is doing wonderful again. NO pain spells! We are sitting at a comfortable 500 ml/night....and will probably stay that way through the summer.

Reagan is also doing great! Only 6 more weeks of school...in which she is counting the days. The (insert sarcasm here) delightful TAKS test will take place next week, and boy are we ready!! Despised it as a teacher, and even more now as a parent. But....this too shall pass....and we will do what we have to do to get through it. Reagan has had a wonderful year in school this year. Has made the A Honor Roll every 6 weeks. We are SO proud of her! She proved to them that even as a former home school student....she could hang with the best! She is in Dance and Softball...and doing wonderful in both.

Caleb, well......he is still just as cute (and ornery) as ever! He is talking more and more, and for the first time is now in the lineup for nightly prayers. It is TOO CUTE! (hard to keep brother and sister serious when it's Caleb's turn)

I am currently taking some photography classes and hope to get some of my work on a website very soon. This has been a deep passion in my heart for SO long, and now I can hardly contain myself at the thought of something possibly coming from it. It scares me to death because I don't know the first thing about starting my own business, but I'm muddling my way through the dark trusting the Lord for guidance.

Sorry this post kinda has a Christmas card feel to it. Just thought I'd give an overview of our "non-eventful" life right now.......

....in which I'm LOVING EVERY MINUTE OF!!!!

Baseball/Softball

2010-04-09T08:04:00.006-05:00

Definitive Plan

2010-04-08T15:30:00.005-05:00

Got a call from NE today. After talking with Caed's dietitian, they have decided to hold off on the weaning process. Our main goal is to get him stabilized. So, it looks as though we will stay on 500ml feeding through the remainder of the summer. Then.....we will slowly begin decreasing again as school starts. They also told us they are seeing several of their sbs kids experience severe cramping when coming off the feeds. THAT explains it! Finally....I get a legitimate reason in my head for all the issues we've been having lately. All of this started when we stopped his nightly feedings. I guess 500ml is not quite enough for his body to compensate on its own....as previously told to us. Caed just might be a little different than the "sbs norm" and that's ok. We will take this thing down as low as we can go....if needed. His pain spells are becoming less frequent and less intense. Praise God for that!

We haven't quite broke the news to Caed yet. And we need to rethink the bed situation. Caed and Caleb have bunk beds and the plan was to move Caleb to the bottom bunk (from crib) when Caed got off all tube feeds this spring. Then, Caed could officially go to the top. Ughhh.....now I'm not sure what to do. I guess if Caleb is not trying to crawl out of his crib, I should be thankful and let him go as long as possible. There is no way I can let Caed go on to the top and still be hooked up. I cringe just thinking about all the possible disastrous scenarios. Oh well.....if a bunk bed is the greatest of our worries right now, then we are BLESSED!

We are in FULL swing with baseball and softball these days, and spending every waking moment after school at the ball field. If I had of known how crazy it was going to be, I might have rethought both Caed and Reagan playing at the same time. BUSY-BUSY! I will post pics soon!!!!
They are both loving it!!!!

Easter weekend

2010-04-05T13:01:00.013-05:00

Why do you look for the living among the dead? He is not here; HE HAS RISEN!

Hope you all had a very blessed Easter weekend. The kids had a great time decorating, hunting, and playing with eggs on Sat. afternoon....and then going to an "egg hunt at night." Todd and I didn't go (instead went to see the Mavs play), but we were told everyone had a great time. They all had flashlights and off they went to find their eggs in the dark!!! Sunday morning was a wonderful time of worship as we celebrated our risen Savior!

Now, for a Caed update - the results from his last test came back today. His labs look "ok." Not GREAT....but ok. His white blood cell count is dropping, which is good, but he is still a little on the dry side. Caed went 3 days pain -free. Then, in the middle of the night last night....we had 2 short spells. They didn't last long, but made for a very tiring morning. The thought is he might have some kind of GI bug that has hit him hard (going on week #4). I don't know. None of it makes sense to me......when we look back at when it all started and how the pain-spells transpired. They began hitting him right after he would eat. 5-7 a day. Then, they became much less frequent but more severe in pain. ER visit. Lately....he will be just fine, outside playing or sitting watching tv or at school or sleeping.....and all of a sudden one hits. There just doesn't seem to be any pattern that I can see. I'm still not sold on it just being a bug, but for now.....we'll keep our eye on him. It may actually be a combination of several things.

The plan as of now is to keep doing what we are doing. He will remain at 500ml of formula for the months of April and possibly May. The risk of dehydration during the spring and summer months here in Texas can be high, so we really need to be careful. Also because of this latest setback, it's looking like we may not get rid of the g-tube in June as planned. We'll just have to wait and see. NE is feeling as though we may need to wait til the end of summer to be on the safe side. (again....for risk of dehydration) As much as we are wanting that thing GONE.....we also don't want to remove it too soon. I know Caed is going to be so disappointed. He talks about "his tube being gone the next time we go to NE" all the time. Which is probably my fault! But it'll be ok. We can talk him through it, and let him know the reasons why we might have to wait. He's a big boy......

playing Egg Toss after they found all the eggs. Our street and driveway were a mess.....but made the birds very happy!!

Some pics from our night with the Dallas Mavericks.....fun!!! We had GREAT seats!

Dirk Nowitzki

Kevin Durant and Jason Kidd

Negative

2010-03-30T09:05:00.002-05:00

....that's what all 4 tests have come back showing. That SHOULD be good news!!! However, we just really want to know why he continues to have these little pain spells. They aren't major (like last week), but enough for us to be concerned (given his history and condition). Overall...Caed is actually doing really well! Completely "normal" 95% of the day.....until one of those spells hit. I have a good (cyber) friend who said her son has the exact same symptoms as Caed when he gets overly dry. So, I guess that could be a possibility as well. ???? We have a blood draw scheduled for tomorrow, and then we'll go from there.......

still waiting.....

2010-03-29T13:05:00.002-05:00

2 of the 4 test results have come back negative. (not sure which ones are still out) Normally, a negative test result is reason for great rejoicing....and maybe this is. I guess I just want a straightforward answer. Why is his belly hurting? Our plan is to get another blood draw probably tomorrow or Wed., and hopefully by then we'll hear something from the final 2 tests.

Thanks for your prayers with our little bump in the road........

No news.....

2010-03-26T07:40:00.003-05:00

.....generally means good news!!!

Caed has actually had 2 very good nights. ZERO waking up!! (which is quite unheard of....even in his "healthier" days, he would always need to get up at least once) The pain spells are much less frequent and his output has also decreased some.

All samples/cultures are being tested as we speak. Then, they will be sent off to NE. Talked with our nurse coord yesterday and she said maybe "whatever it was"........is working itself out of his system. Our main focus right now is still the possibility of c-diff colitis.

We can't thank you enough for your prayers for Caed. The Lord has heard!!

**UPDATE** - school nurse called awhile ago....Caed was in her office hurting. He is now at home asleep in bed. He told me "it wasn't one of the major pains, but just the normal ones..." Poor baby!! He is ok. These "spasms" seem to go away (as quickly as they come). We'll just continue to pray those results come back QUICKLY!!!!!!!!!

Update from NE

2010-03-24T08:43:00.002-05:00

Just heard from our docs in NE. They too are concerned with his white blood cell count. Caed typically stays at 5000-7000. Monday's test showed 18,000. Our first step is to get a stool culture. They want to check for c-diff again. This might be an odd prayer request, but we are hoping that it is. Our nurse said some sbs kids have lots of pain with c-diff (and increase in stool) - which Caed has had. If he does....then we can treat it with some long term antibiotics. If not, they are wanting to see him! So, our June appt. might come sooner than we expected. (but we will pray not)

Caed did ok yesterday. Most of the day acted very normal with the exception of a couple of short pain spells. He is definitely stooling much more and the consistency is pure liquid. Ughhh! He has also had 2 accidents in the middle of the night (which he has NEVER done before). He is having to get up about 4-5x during the night. Tough on Mommy and Daddy....but tougher on him!

Please pray for this next step in trying to determine what has happened and where our healthy, thriving little boy went............... ;)

What would March be without a trip to our local hospital?

2010-03-23T07:31:00.004-05:00

Where to begin......

I guess I'll pick up from our last post. Because Caed has been doing SO well (also known as the "IRP Rockstar" in NE) and since we were soooo close to our goal on enteral feeds, we decided to go ahead and "pull the plug" and stop our nightly hookup routine. He did GREAT, and his output (nice word for poop) was even better!! I knew it! He is ready and can do it!!!

Several days into our experiment we began to notice some behavioral issues with Caed (mentioned those in previous post). Just very out of the ordinary and seemingly a bit coincidental....or what is? NE called with his latest blood work and said his CO2 was down. (which might explain some of his symptoms) They have told us when your CO2 is really low, you might feel like you're having a hang-over. Remember back when we had lots of trouble waking Caed up (1 1/2 yrs. ago)? LOW CO2!!!

However, last week during Spring Break I began to see yet another symptom, but this time....one that always causes the hair on the back of my neck to stand at complete attention. PAIN! He would be fine....totally normal.....practicing up his Nacho Libre moves on Grandaddy....and then get a certain look in his eye....and come to me whimpering of stomach ache. (generally about 30 minutes after eating) I would take him to the potty and that would do the trick. Yet....going from 1-2 stools/daily to 5-6.....and pain after every meal.....was very disturbing for us!!!!

Something was up! And Mama's instincts were on high alert!

Yesterday when I picked Caed up from school, he seemed very tired and unusually quiet. After getting Reagan (and friend), we drove on over to Sonic to celebrate Haley's 1st day at Celina School. Both girls wanted ice cream....and after Caed responded (in a whispering voice) that he only wanted water......I knew! We barely made it home. He began crying so hard. He literally flew out of the car into the restroom, and then cried himself to sleep afterward. I immediately called Todd and NE...and we began formulating a plan. We didn't think it warranted an ER visit (been there....done that), but knew we needed to get an x-ray and labs sometime this week. I even talked with our good friend/GI dr in Lubbock and were making plans to see him. When Todd got home, we knew we needed to get Caed up and moving (didn't want CO2 to get the best of him), so they headed off to McKinney to run a few errands. I continued to make plans for dr./x-rays/lab.....when I received "the call."

"Lori, I don't think we can make it back to Celina....he's hurting too bad.....we need to find a hospital!"

I have always been with Caed throughout this whole ordeal. Right by his side. Comforting. Consoling. Trying to get him through whatever was wrong. This time I couldn't. I was on the opposite end. I could hear the cries. The pleas for help. And yet was so far away....and utterly helpless. I ran to our neighbor's house (whose wife had just had breast cancer surgery that morning.....BAD TIMING!!!). They took over (with Caleb) without any hesitation...and off I went.

OH.....to be that parent.....putting your hazard lights on.....speeding through the city....all the while your mind racing at double speed. I cried. I prayed. I pulled myself together only to fall apart again at the next light..... Finally, I was there. I saw him. He was ok! Scared to death. But ok. Much different from our ER experience 2 yrs. ago!

They started him on an IV.....drew blood....and took a couple of x-rays. (all within lightning speed of 4 hours...ha!) The x-rays showed nothing of great concern (obstructions, etc...), however....the dr. said probably a contrast study of bowel is what we would need to really know what's going on. yuk! Don't like those. His labs came back ok....other than elevated white blood cell count. (still not sure what the cause of this is) and also some ketones found in urine. We were sent home around midnight.

Our course of action now is to go back to all enteral feeding/meds......just like he was. His body simply may not be quite ready to do all this on his own yet. Which is fine....but such a let down to me. For anyone who is around Caed at all.....you can attest to his "normal-ness!!!" You would never, ever know anything was ever wrong with him. I guess I too fell into that trap and thought he was doing better than he really was. Caed has a chronic condition...and one that may need the help of feeds and other meds for a long time. We just had our hearts set on g-tube being GONE by summer. I honestly have my doubts now. It just may take a little while longer......and that's ok!

As we left the hospital last night, Caed wanted to ride with Mommy (as usual). Before even getting out of the parking lot....he was out! Completely exhausted. I sat looking at him in the rear view mirror and thanking God (once again) for hearing my cries for mercy. Pleading with Him for Caed to be ok. All 3 of my children lay sound asleep in their beds right now. It's a gift!! An absolute precious gift that I do not take lightly.

Thank you ALL for your rapid response last night. The sound alarmed and the troops were sent out immediately! Again....we were overwhelmed by the love, support, and especially PRAYERS for our little boy during such a scary night. Thank you Samantha, Becca, and Christa for allowing me to simply grab my purse and rush out the door. I never once worried about Caleb....knowing he was being well-taken care of. You were evidence again of God being in control....even down to the tiniest 2 yr. old detail!!!

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go. (Joshua 1:9)

CO2.......

2010-03-16T17:37:00.003-05:00

.....why do like to torment us so?

Well....results came back from Caed's latest blood draw. The main thing we found out was his CO2 was low again! One of our nurse coord asks me lots of questions and then was going to pass it along to the docs. Was sure wishing I would have heard back today, but Tues. is their IRP outpatient clinic (BUSY!!!!) day. Hopefully, will learn more tomorrow. May just be a simple solution like adding sodium bicarb to his ORS drink. (since he is no longer getting it through his feeds)

Caed has been off ALL feeds for 10 days now!! Won't go into all the crazy details which led to it, but basically after 3 "free" nights, we decided to continue on and just see how his body handled it. He was at 600 mls....and our goal was 500.....so, we felt we weren't too far off. For the most part, Caed has been his normal self. But, we began to notice (just days into our little experiment) that he was MUCH more irritable, whiny, frustrated, and tired. Now, all kids (and us adults too!) go through spouts of this, but the coincidence of it all happening at the same time made us question whether it was cause and effect. Still not certain.

We will probably go to either weekly or bi-monthly labs for awhile to monitor his CO2 as well as everything else because of the change. We are optimistic it will someday level itself out without meds, etc.... , but sometimes reality sets in causing us to remember he still lives with a chronic condition. Something that is SO VERY easy to forget because of how "normal" Caed acts. However, we PRAISE GOD for that!

Will update again after I talk with NE further. Thanks for the prayers.......

*we are enjoying our Spring Break in bi-polar Lubbock.....snowed yesterday....65 and sunny today! Gotta love it!!!

Not just any stick

2010-03-12T12:45:00.004-06:00

Today's blood draw for Caed is HUGE!!! I will not go into all the details (just yet), but simply say.....this may be a big indicator of how his body is truly handling things on its own. Probably will not know results for several days (and especially it being a Friday afternoon). Will post as soon as we hear them!

Please just pray for GOOD, HEALTHY......NORMAL (short bowel) results!!!!

Thanks.....we love you!

The last time ??

2010-03-04T08:50:00.005-06:00

The past few nights as I have been hooking Caed up, he has cried out in pain. One night I just stopped. Didn't even finish. I felt so bad for him. Last night again he cried himself to sleep. I knew the (dreaded) time had probably come once again to change out his button. So, this morning, I made the announcement. Caed was actually relieved and somewhat excited until I began getting out all the supplies and he realized we were doing it NOW! He began whimpering and begged me to please not hurt him. Of course, just like all the other times.....my heart was racing just as hard and fast as his was. Only I had to remain calm and unbothered. (have I mentioned I have great acting skills??) Caed wanted Reagan to come in and hold his hand. She was very sweet, but scared out of her wit as well. She told him, "Caed, I will hold your hand, but I can't watch. You just tell me when it's over!" Caed on the other hand.....won't take his eyes OFF IT! I think it scares him more when we tell him to 'look away.' He wants to know what's happening to him. (same with blood draw) It was quick and easy. No problems. However... as I went to console Caed when it was over to tell him how proud I was of him and HOW BRAVE he is....I could feel his little body shaking all over and his heart beating a mile a minute. I could see his pump and the bag and tubes hanging from his bedside. Oh, I wanted to cry at that point. When will this be over? Why has this little boy had to go through all this the past 2 years?

As Caed left out the door for school, I was busy cleaning up all the 'supplies'.....and at that point wanted to fall on the floor and cry my eyes out. (mostly due to just exhaustion) I know....it's just changing of a button. It really isn't that big of a deal. There are always worse things. I am so past the absolute "grossness" that accompanies changing it out. There was a day and time in my life in which just a simple trip to a hospital to "visit" someone would cause my head to spin and ultimately faint. I would find myself in an unused hospital bed in the room next door with medical personnel swirling around me. haha And now, I think....wow! I could be a nurse. Medical issues fascinate me. Hospital life is exciting (as long as you or a loved one is not the patient). I am completely unfazed by needles, blood, vomit, or any other bodily fluids. And yet.... as this little boy's Mommy.....I will NEVER get used to seeing a quarter inch HOLE in his abdomen. I won't! It's not normal! Maybe in other people. But NOT my child!

As I sat to catch my breath, the thought hit me. Like a ton of bricks. Was this the last time we will ever have to do that? The next time we take it out.....will there be no 'replacing it?' I still can't believe it. What will it be like not being there anymore? What will his tummy look like? How big of a scar will this hole leave? And yet, I'm scared to go there. Don't want to put the cart before the horse just yet....

It's just times like this morning that once again remind me of the seriousness of Caed's illness. When the doctors told us days after his initial surgery (after being shocked he survived it), that this would just take lots and lots of time.....I remember shaking my head in agreement. "We can do that!! Time is easy. So like what?......10-14 days in the hospital??? Wow, that's a lot. But we can do that!" haha Oh....how naive I was. Thank the Lord for that!!! Never in my wildest dreams would I have thought Dr. G meant 2+ YEARS!!!!! It's coming. The end. Very soon. I just know it.....

Piece by piece

2010-03-01T09:00:00.007-06:00

Today is Caed's 2 yr. short gut anniversary. I remember dreading this day last year like the plague. This morning I woke up very early to rain outside and assumed it was a perfect symbol as to how I would be feeling today. Dreary. Sad. Deep in thought. Tears.

Caed's story thus far has a happy ending, but reliving those first critical hours....days in the ICU wondering what in the world just hit us.......then the weeks which turned into months....and now YEARS....can be difficult to wrap your brain around. I in no way want to live in the past, but for me......March 1st is not another normal day. It will forever in our home be a Remembering Day. We will remember the pain, the heartache, and the utter desperation. We will not forget those days and nights in which we were at rock bottom. The day in which our world was turned upside down. I believe it's important to remember where you've been.....so you can see HOW FAR you've come. And to know He's still here......He's still carrying us......and still the same faithful God as He's always been! Nothing, absolutely NOTHING can ever change that. What tremendous hope we have!

Caed is aware of his "annibersary" today. Although to him this day simply signifies getting a giant waffle cone filled with chocolate/vanilla swirl ice cream after school. (and it's not even FRIDAY!!!) I want him to know what a special special day this is. Caleb and I went to surprise him at school during lunch. To have seen the look on his face.....it was priceless. My desire is to make this day just as special for him as his birthday (only minus the gifts and party drama...ha!) I wish we had an actual "healing day." A day in which everything was made well again. In an instant. Now, THAT would be a great Remembering Day deserving of ice cream. However, because we don't have that....we will just use the day the Lord lovingly chose our family (and particularly Caed) to carry out a very special purpose.

Today also is a big day in another way. We are now down to only 600 ml nightly!!!! Continued evidence of Caed's progress and God's hand on him. Hopefully we will have 2 more months on feedings....and then be totally OFF in May and June. We will carefully watch his labs those months in particular and if all checks out......Dr. M said we'll look at taking the G-tube out permanently at his next NE appt!!!! We are SOOOOO close......and yet I think Todd and I still struggle with watching Caed's output.....weight......energy level.....labs, etc....each time we go down on his feedings. Please pray for all to continue to go well in the weaning process. So far....so good!!!

The Lord has taught me SO many things over the course of these past 2 yrs. in particular. However, there is one that seems to always trump the others. It's His Sovereignty. Not just to know about it....to read it...or be aware of all the great debates surrounding it, but to LIVE IT! To see first hand how all the pieces in our lives fit together. Some of them are wonderful....happy, joyous occasions or memories. My wedding day and birth of Reagan, Caed, and Caleb... just to name a few. However, there are also many pieces that are horrible! Things that you wouldn't wish on even your worst enemy. We all have them. The good and the bad! And that's what makes our lives such beautiful, indescribable works of art. To see how the God of the universe takes the good, the bad, and the ugly and molds them all together to make a masterpiece that even the most talented of artists couldn't possibly create. It's down right HARD.....no...it's excruciating..... to go through those difficult times in our lives. I will never make light of them. However, if we can only learn to look at them through God's eyes. And know He is using our trials to make us stronger and ultimately to make our life portrait more exquisite!!!

There are many pieces (possibly) of our life portrait that remain "open.". Untouched. We must simply wait patiently on the Lord to continue carrying out His plans and purposes for our lives. And in the process try not to resist Him on anything (difficult) He brings our way. Remember he sees the big picture. We cannot. Let Him do His work.....and glorify Him in the process.

Each day. Each moment. Each situation that comes into our lives....is but a tiny puzzle piece of an enormous work of art. Thank you God for loving me enough to work so intricately and diligently on my life....and for cleaning up and making something beautiful out of all the ways I continually mess it up.

Because of the LORD's great love we are not consumed, for His compassions never fail. They are new every morning; GREAT IS YOUR FAITHFULNESS!!!!!!! (Lamentations 3:22-23)

Need for more fluids

2010-02-19T19:00:00.005-06:00

...that's what our recent blood draw revealed. Everything else came back MUCH BETTER!! Blood sugar was up to 86!! haha (knew the former 37 had to be a mistake) His CO2 was 23 (which is GREAT!) Our nurse in NE stated a few things (can't remember names exactly) that were elevated, which tells us he is DRY! She told us to watch him this weekend and REALLY push his ORS. In my opinion Caed has done a wonderful job with his daily fluid intake. (probably thanks more to his sweet teacher!) He drinks 700mls each day of his ORS at school. However, he needs 1500mls daily, so our job when he gets home is to push the other 1/2. (not always as easy when he is out playing) But overall.....he consistently gets at least 1200mls every day. Therefore, that leads me to be a bit confused as to why our ORS-boy is "dry." There are a couple of possibilities that I am going to check into further (med that affects his output which we have changed in the last week). Although this is nothing major, and quite honestly just one of those things Caed will have to learn to watch.

Let's Try This Again....

2010-02-17T11:23:00.003-06:00

Now, before I tell you why Caed is getting his blood drawn again within a very short time frame, just take a good look at this VERY BRAVE boy sitting all by himself!! (it's only the 2nd time he's done this) After his central line was taken out, and he had to give blood the old fashioned way....he always wanted me to hold him in my lap. But...for some reason last week, he just decided to jump up in that chair alone. You would have thought he climbed Mt. Everest....the way he walked out of the clinic....head up...chest back...and a little strut in his walk. I told him he looked like a "teenager" to me!! He just nodded in agreement. haha

(next time...I might even try to video him. This boy is rock solid. No flinching....no whining....just pure bravery and a smile! And yes.....he wants to watch the needle the entire time...ugghhh)

Typically we go in every month...... draw blood.....and then hear back from our pediatrician that his labs looked great and they were faxing them off to Nebraska. However, one morning I get a call and I could tell by the nurse's voice....something was a bit concerning. She said some of his numbers were a "little low." Come to find out....A LOT low! His blood glucose was around 37 (normal would be 70-100), and the dreaded CO2 was also low. They told us to watch him very carefully, making sure he didn't get cold, clammy, and unresponsive! (also that this level was dangerously low for possible seizure and coma) WHAT????? Are you all SURE you're talking about the same little boy who played football in the living room with his Daddy last night? The same child who played a quick game of Wii before school? And the same child who (after talking with his teacher) was playing like normal out on the playground? Todd and I knew there MUST be some kind of mistake. Caed was showing zero symptoms related to low blood sugar or CO2. Our nurse coord in NE also agreed and felt this was some kind of lab error.

So that leads us to yet another stick in the arm this morning. Lord willing we will be hearing something back today or tomorrow reaffirming his GOOD HEALTH!

R-O-B-E

2010-02-11T13:35:00.003-06:00

Yea! Videos are up and working again..... Thought this one was TOO funny of Caleb!

Caleb birthday pics

2010-02-08T21:57:00.009-06:00

Making cupcakes with "Ronnie and Haed"

Yea! Mommy made my favorite....Spanish rice!

What did they put on my head????

Ooooo....I like the candles!

But NOT the singing!

I LOVE my chocolate cupcakes.....

but NOT the fact that Mommy won't let me take it to my room!

Time for presents

ABC's....my favorite!!!! (he can already identify the letters R, O, and B.......hmmmm, hope that's not a sign!)

The Blur

2010-02-08T08:36:00.007-06:00

Happy 2nd Birthday to our sweet gift from God!!!

Oh, I could tell you stories about this little boy. He is stubborn, strong-willed, independent, dislikes females (but LOVES men),....sweet, funny, cuddly, an absolute JOY all rolled into one!!! It's like rolling the dice. You just never know which side of Caleb you're going to see. He is talking more and more each day, finally putting words together to make phrases. He loves Elmo ( & all the Sesame Street characters), his "B" (blankie), going outside!, finding ABC's, and being with "Ronnie & Haed." (Reagan & Caed) His newest obsession however is a little green superhero (on PBS) called SUPERWHY!!! It's a little amusing actually because I think in all honesty this show is meant more for 3-5 yr. olds. It's all about letters and putting them together to make words. Our little guy however is GLUED when this show comes on. (that's when Mommy does her best work around the house!) haha

Someone asked me a few days ago the birth weights of my children. I quickly rattled off 7'8 and 7'2....and then I froze. I honestly had NO idea!! Numbers kept running through my mind and yet nothing sounded right. Now, I know we can simply chalk it up to Caleb being the 3rd child. I definitely understand that. But, it was more for me. I then began thinking about the days Reagan and Caed were born. The exact times of their birth, etc.... And yet, still I couldn't remember anything about Caleb's! The conversation quickly changed, but this has continued to haunt me ever since. Caleb was 21 days old when Caed got sick. At that point....I lost that little baby, and didn't really get him back for almost a year.

(with some digging....I found out he weighed 7'13....and was born at 8:11 a.m.)

(less that 24 hrs. before Caed was rushed to ER)

(the night we officially got him back.....after 10 very long months!!!)

I had the great privilege of holding a very special newborn this weekend (Baby G). He was absolutely wonderful!! And yet, once again....it was hard on me. All I kept imagining was Caleb, and HOW MUCH I wished I could have had him at that age. To TRULY have him....to know him....and he KNOW me! I don't remember Caleb as a baby like I do with Reagan & Caed. It makes me sad...... All we have are pictures, and yet looking back at them only cause me to think "who IS this?? I don't know this baby!"

The verse that continued to come to mind this weekend was Joel 2:25 where the Lord says, "I will repay you for the years the locusts have eaten...." I cling to that, and believe it with all my heart!!! I know that Caleb has no memory of his first year, unlike the rest of us. But, because of the yr. I was not with him, there is now a tremendous bond with the woman who WAS! It is heart breaking for me, and yet I wouldn't change a thing given the same circumstances. My parents (along with MANY others) were absolute God-given angels for us during that time. I will say from a Mother's perspective, I COULD NOT have handled both a newborn and critically ill child by myself. So for that, again we say THANK YOU from the bottom of our hearts!

We are pressing on. Looking to the future with hope and anticipation! GOD has done a mighty work in our family, and we KNOW He will continue using us to carry out His plan.

Thank you God for knowing we needed baby #3 (even though we fought You). Thank you for how You have continued to work all of this out...we see Your hand with every step!!!!

Don't forget

2010-02-03T06:39:00.010-06:00

Our silly silly boy!! Never a dull moment with Cader-Mader. Basically all he understands is that by summer he will not have to be hooked up anymore. But the monthly delight of actually getting to lower his dosage?......naaaaaaa! Caed's expression is honestly how I feel - like an overjoyed kid at Christmas. He is currently being fed via tube for only 6 hours each night!!!!! It's amazing when I think about it. (and more importantly....his weight seems to be holding strong!) I know this all doesn't end with the anticipated departure of dear Mr. G tube, for this will be a life long condition Caed will have to deal with.....but much of his "normal" life will (Lord willing!!) return.

Some days I just go through the motions. Getting kids ready for school, packing lunches, cleaning the house, running errands, cooking dinner, and then tucking everyone in at night. Day in - day out....over and over and over. However.....there are those moments (this past weekend included) where I become so overwhelmed with God's goodness. A non-believer could look at Caed's entire medical story and see how the surgeries, the treatments, the excellent doctors, the rehab, the meds, and simple "time" are the keys to his continued healing. But as a good friend reminded me last night, "when you pray SO HARD for something, and it is answered.......you KNOW it's the POWER of GOD!!!!!" This weekend at D-Now, the band played "Caed's song" (Overcome) several times. I wanted so badly to hold Caed high above my head as the 500 voices sang in unison.

"Don't forget!!!! Here is a child whom the hand of GOD touched. He is powerful. He is loving. He is gracious. He is merciful. He is GOOD!! If you need a reminder of the power of prayer............look no further than this little boy!!!

The VICTORY is YOURS!!!!!!! YOU did this!!!!!!! You are a living God who still performs MIRACLES!!!!"

Oh, Father! Help us not grow cold. Help our eyes not become dry. Renew in us a passion to love You more, to serve You better, and share Your marvelous works with others!

D-Now video

2010-02-02T11:32:00.003-06:00

Broken DN10

2010-02-01T11:22:00.011-06:00

150 teenagers + 15 college group leaders + 24 host home parents + amazing band & speaker = only one thing.........D-Now!

Our annual Disciple Now took place over the weekend. Once again, it was absolutely wonderful!! I know I can speak for everyone involved and say physically we are beyond exhausted....but spiritually are restored and refreshed. The theme Todd went with this year was "Broken." God showed up and worked amazing things in the lives of these students (along with the rest of us!). We feel encouraged, but also challenged to carry out those things the Lord showed each one of us. Please keep these Celina students in your prayers............

Todd and his coffee!! (inseparable)

7th grade girls

7th grade guys

8th grade girls

8th grade guys

9th grade girls

9th grade guys

10th grade girls

10th grade guys

11th grade girls

11th grade guys

12th grade girls

12th grade guys

My Middle Child

2010-01-24T14:35:00.003-06:00

The joy of a mother's heart. When her child first learns to write his or her name!!! Pictures like this are to be savored.......oh the sweetness, the simplicity!

BUT WAIT!

Not when it's been written on your DRYER in a PERMANENT marker!!!!!!

My first reaction was not a pretty one. I was more than upset with my little nameless middle child. We of course went through it with Reagan.....and did with Caed (when he was about 3-4 yrs. old). But, not now! Not at 6 1/2! He KNOWS BETTER!

I can't remember the exact words I used, but he knew I meant business! And he knew what he had done was wrong. However.....that was almost 8 weeks ago. My dryer still looks like this. To be perfectly honest....I love it now! I have not sought out to find any "cleaning tricks" to get it off. It has now become a reminder to me. A reminder of my little boy. And more importantly, a reminder that he is not going to stay that way! We have had our washer and dryer for 14 yrs. I have no idea how much longer they will last. I guess they could go out next week (God forbid!), or last another 20! But, I assure you if they indeed last many many more years, you will still find the mark my middle child left behind...........

Rebound Basketball

2010-01-16T22:32:00.008-06:00

(this is what Caed would do after he scored each time. Run back down the court with his hands up in the air.....like he had just made the WINNING SHOT!)

Today was Caed's first basketball game. His team is called the Wildcats and they did GREAT! (still working on the dribbling part.....you know, it's much easier to get down the court with the ball if you just RUN!) They actually had a double header, and I could definitely tell a difference in game #2 compared to the 1st one. I know they will continue to get better and better.

I had a woman approach me and ask a few questions about Caed's condition (name of it, etc....). We talked briefly, but she ended with "how amazing it was to see him out on the court running around like everyone else!" I agreed, of course..............but that simple comment stuck with me the remainder of the day. Several times throughout the day, I just went and put my arms around him and gave him a BIG squeeze. Not because of his game necessarily or how well he played. But, because God used another parent in the stands to remind ME....his Mommy.....that #28 really IS evidence of God's power....and of his love and mercy. It will be 2 yrs. March 1st. I can't even believe it. Seems like a lifetime ago, and yet at the same time, it all happened just yesterday. Most days, I forget. We live life and look to the future. But, sometimes it's necessary to look to the past as well. To reflect on God's goodness....His faithfulness! And then trust that God has not changed....He is the same yesterday, today, and tomorrow. And will continue working out His plan until the day of completion!

Caed and best friend Reid during the huddle. haha (they were so cute playing together!)

either a 3 pointer.....or a pass to the player under the goal!

each player has a different colored wrist band. They are supposed to find their same color on the opposing team and stick with 'em! At one point, all 8 other players were down at one end of the court. Caed and "his man" were down on the opposite end stuck together like glue! Talk about FULL COURT PRESS!

strategy talk with Coach "Daddy"

Before the Morning

2010-01-15T19:18:00.006-06:00

My heart is heavy. I have been in a fog all day. Today was one of those days where you feel your world is crashing down around you. And yet....just as He always does......God met with me. Personally!

I was checking my face book this afternoon.....honestly with no real interest in anything going on. All of a sudden I see one of our friends from Lubbock has posted a link to a song about his little boy (Jayken) who has had MAJOR medical issues since pre-birth. I was curious, so I clicked on it. Began listening to the story behind the song (Before the Morning), when I glanced at the clock. Oh no.....it was past time for me to go pick up the kids from school. I shut off the computer, ran out the door....with my mind back on my problems. I had been in the car for less than a minute when all of a sudden the DJ comes on the radio announcing the next song. I couldn't believe it! It was our friend's song!! The one I had just seen on line. I listened intently with tears streaming down my face. It was HIM! It was God speaking straight to ME!

I am so thankful for a God who can use a song....a message..... to touch each and every one of us, personally! We all are going through different things and experiencing various trials, but HE speaks to us individually. It's called Rhema! Thank you for this simple reminder...........

The song is called "Before the Morning" by Josh Wilson. Check it out!

It's a small world.....after all

2010-01-13T15:30:00.005-06:00

This heart-breaking picture has hung on our refrigerator for the past 6 months. Right next to pictures of our own children and family members. But until today, she finally became REAL!

We have the privilege of praying for and sponsoring a little girl from Haiti through Compassion International. Her name is Lourdia, and she will turn 13 on Caleb's birthday (2-8). Normally, when devastating news around the world occurs, our hearts naturally go out to the people of that country or in that situation. But, when you can put a face and name to a major world crisis, it brings it home a little harder. And also makes the world seem much smaller.

Please join with us in praying for Lourdia and her family. We do not know of their exact location, but seeing how small the country of Haiti is...the odds are rather high that a member of her family or someone they knew was killed in the destruction. Also continue to pray for ALL Haitians affected!!!!

Psalm 130:2

O Lord, hear my voice.
Let your ears be attentive
to my cry for mercy.

Baby G update

2010-01-13T10:25:00.003-06:00

I have received many emails inquiring about court yesterday for Greg and Kristie. Again...I won't go into details, but simply say that Baby G will remain in their home for 2 more weeks. After that, will come another recommendation as to where he will be placed (other factors in play here). PLEASE continue to PRAY they can keep him!!!! And thank you from the bottom of our hearts for all of you who do not even know this sweet family. Greg is right! The body of Christ is an amazing thing and to see it come together for those in need is absolutely beautiful!!!

MAY YOUR WILL BE DONE!

Special prayer request

2010-01-11T13:00:00.005-06:00

Please join us in praying for some very dear friends of ours. They have desired to begin a family of their own for so many years now. It has been a long, HARD road as any of you who have struggled with infertility can attest to! Currently they are in the process of fostering to adopt. Without going into the full story (lots of glitches in the system, sad to say).....they will be going to court tomorrow (Tues.) to fight to keep a little 7 week old baby boy in their home. They are completely exhausted emotionally and physically from this whole battle. They know GOD is in control and are trusting Him FULLY regarding the outcome.....however, it doesn't take away the pain and their love for little Baby G. They will be in court all day tomorrow. PLEASE pray for this sweet sweet couple and for the Lord to pour out His blessing and favor!!!!

Caed, Caleb, and Reagan with Greg & Kristie the summer Caed got out of hospital. My kids absolutely LOVE "Jack" and Kristie!!!!!!! (when Caed was first learning to talk, "Greg" came out as "Jack"......and we have called him that ever since) :)

We LOVE you guys!

Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed. I cry out to God Most High, to God, who fulfills {his purpose} for me. (Psalm 57:1-2)

"Do I HAVE to go???"

2010-01-09T21:32:00.007-06:00

Caed's words as I surprised he and Todd with tickets to tonight's Dallas Cowboy game. Can you believe it? He kept telling us if Reagan couldn't go....he didn't want to either. haha This was part of he and Todd's Christmas gift....just a little late. Not sure he truly had a grasp on how "cool" this gift really was! Maybe when he gets a little older.......

All he wanted for Christmas was football stuff, so....naturally I thought a ticket to an NFL playoff game would just top it off. haha Talked to Todd during halftime and he said Caed was doing great....and loving it! He may not fully appreciate how many people would LOVE to have taken his place, but I'm sure of one thing: he and his Daddy are making a memory!

Lord willing, there will be many more just like it...

Dangling Candy

2010-01-07T22:00:00.003-06:00

Sometimes my analogies are stretched to the limit, but that's just how my simple little brain operates. And if God can use a tiny bag of M&M's to teach me something....then so be it!

I love candy! Always have....probably always will (much to my dentist's dismay). You can set before me all the cakes, pies, ice cream, and desserts in the world.....and 9 times out of 10, I won't touch them. But, bring out a bowl of CANDY???? Watch out! I love road trips because it's the one time I have permission (in my head) to load up on SweetTarts, Skittles, Milkduds, Hot Tamales, M&M's, Jolly Ranchers, Blow Pops.....ok....somebody please stop me!! (they keep me awake, of course.)

Have you ever wanted something SO MUCH?.....you begged.....you pleaded with God....you cried out.....and you literally could think of nothing else than this one 'thing.' And one day....out of the blue, the unthinkable happens. It actually HAPPENS!!! You are in shock. It can't be! God has finally opened "the door" and is giving you a glimpse of your deepest desire. It's SO close. You can literally feel it, smell it, taste it.....and visualize your new life with it. Oh wow!! God is amazing. He is SO GOOD!!! Just look at what He is giving me! BLESSED BE THE NAME OF THE LORD!!!

....days, weeks, or even months go by. You are SO happy. Your dream is finally coming true! And then it happens. You get "the call." The call that sends those dreams straight out the window. You are in shock. It can't be! God had finally opened "the door?" Right? You sit disillusioned. WHY GOD? Why did you allow all this to happen? Why did you dangle this in front of me....taunting me the whole time? You KNOW my heart! You know how MUCH I wanted this!!!! How could you?

I have felt this way probably more times than I care to admit. Imagining God holding a big bag of my favorite candy in front of me. Dangling. Back and forth. Back and forth. He sees how much I want it. And just about the time I reach to grab it....He snatches it away laughing all the while.

I may not understand it all. I may not understand His Ways......BUT I KNOW my God is good. He is a loving, caring, gentle Father who takes joy in giving me great gifts. Just as I would never consciously taunt my own children with something they really wanted, I stand in confidence knowing my Father in heaven wouldn't either. So what is it? What is this "dangling candy?" What on earth is its purpose? That I don't know. However, I can look back in my life and see how that "closed door" was actually a blessing in disguise. You see....God used it. He had a purpose in it from the beginning. It wasn't to taunt me. But rather to show me if I thought THAT was good....just wait!. HIS PLANS are better than I could possibly imagine!

Sometimes the Lord gives.........BLESSED BE THE NAME OF THE LORD!!

...but sometimes He takes away.........

BLESSED BE THE NAME OF THE LORD!

BLESSED BE THE NAME OF THE LORD!

BLESSED BE THE NAME OF THE LORD!

The countdown continues

2010-01-03T21:01:00.005-06:00

I told you in Dec. I would post a picture at the beginning of each month to show this number getting smaller and smaller. Our goal will be around 400-500mls. Last night as I was hooking Caed up, we talked some more about his tube being gone forever (Lord willing....) very soon! He got a weird look on his face and became very quiet.

Me: what's wrong Caed? Aren't you excited about that?

Caed: no....I don't want it to be gone

Me: Are you crazy little boy?.........when you get your tube out, then you'll be able to sleep on the TOP BUNK!....and get to wear the zip up pj's you love so much.....EVERY NIGHT!

Caed: I know...but I'm just scared. I don't want them to "pull it out." It hurts.

Me: No....Caed. This is an easy one. You know how it comes out. It'll be just fine!

Caed: But what if I have to go back in the hospital and have surgery for 2 hrs??? (dr. M said they might have to do a little surgery to sow up the stoma if it's gotten too big....however, Caed knows nothing of THAT!)

Me: Caed, you need to stop worrying. Taking your tube out is very easy. That will be a day when we celebrate! No more tubes.....no more hook ups. We can have a big party, ok?

Caed: (shrug.....and not very convincing reply) ok......if you say so.

We said our prayers, but Caed continued to remain (unusually) silent. This morning, Reagan told me she gave Caed a "pep talk" after Todd and I left the room. Oh, how I wish I could have heard it!!! There IS a countdown. A countdown to less hrs on the pump and lower mls.......no more days of mixing formula and priming the pump....no more monthly deliveries from Home Health.....and no more (dreaded) changing buttons periodically. The countdown for me is one of normalcy. "Normal" bedtime routines.....simply brush teeth, crawl under warm covers, prayers, and bedtime kisses. No more waking in the middle of the night to unhook Caed......no more waking in the morning only to find his tube has leaked and (stinky!) formula has soaked through to the mattress. No more "crusties" (as Caed calls the dried fluid that forms around his stoma)...........

I literally could continue writing example after example. My life has been centered around short gut.....hospitals....procedures/surgeries......fear......medical terminology I had never heard of.........pain!......blood draws......traveling to drs. in NE.......and being the mommy of a "sick" little boy for almost 2 years. I want normalcy more than I could ever describe, and yet I'm afraid I don't remember what that fully means anymore.

I think I'm a little like Caed on this one. I WANT IT GONE!!! And yet I'm scared..... I can recall this same feeling with that awful central line. Hated the thing, but yet it was security for me. I was fearful of life without it. I thank the LORD for His continued healing and the fact that Caed has NO need for it anymore! I know it will be the same story with his feeding tube. Just as I am reassuring Caed that "all will be fine......stop worrying!".........I know God is reminding me of the very same thing in my own life.

Thank you Lord for Caed's sweet little voice tonight saying, "Fank you God for healing me and making me better....."

YES!!! We DO thank you God! And don't take any of this for granted.

YOU ARE FAITHFUL TO THE END!!!!!

Hollingsworth Christmas

2010-01-03T19:54:00.008-06:00

We had a great time together.....as always. Matt & Kristi opened up their home in Belton and we spent 4 days just having fun and making memories. Going to the movies, Wii Resort, Rock Band, and midnight games around the dinning room table are just a few of the things that made up our time together. Here are a few pictures of our week:

The Hollingsworth side (Katie, Scott, Todd, & Matt with families)

Grammy and her 6 grandkids - Caed (6), Claire (almost 7), Kambree (4), Caleb (almost 2), Reagan (9), & Cannon (2).....kind of a mouthful!

Caed & Claire

Reagan & Claire....with their new pink scooters

Caleb & his partner in crime....Cannon (only 4 mos. apart)

the whole gang

Reagan

Claire

Caed

Kambree

Cannon

Caleb

Rock Band

fun game of Twister

It's a bird......it's a plane.....

2009-12-29T13:29:00.004-06:00

...it's SUPER CAED!!!

We have had lots of fun doing nothing today. Just enjoying the Christmas break and of course...making lots of messes. I was washing the dishes when I began to notice 2 little people scurrying about the house. Going in one room, coming out with arms fully loaded. Every blanket, pillow, and bedspread have been relocated to the playroom. Ugghh! A mother's worst nightmare. Although, today I just joined in....helping to make the most of Mt. Hollingsworth.

We're "supposed" to get more snow today, but you just never know here in Northeast Tx. Our plan is to head to the Hill Country for Christmas #2 tomorrow......

Good gifts

2009-12-28T11:54:00.007-06:00

Cruelty is making your 9 and 6 yr. old wait 2 DAYS and 300 miles AFTER Christmas to see what Santa brought them. I think I understand why the tradition began for little children to "go to BED" before they can see what Santa brought them. The 5 hr. trip back to Celina yesterday was a bit hard on these two. Once we pulled in the driveway, Todd and I went inside to turn on the heat and get into position with the camera. They were beyond thrilled!

See if you can spot the similarity in these pictures of Caleb?????

Her #1 request!!!

"Snake Eyes"

Tony's backup

Reagan's new outfit

I am always reminded of this particular Scripture at Christmas-time or the kids' birthdays:

If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him! (Matt. 7:11)

Reagan asked me the all familiar question that I remember asking my parents countless times as a child. "Mommy, what do YOU want for Christmas???" I told her all I wanted was to see THEM happy and healthy. Of course, that answer just doesn't cut it for a 9 yr. old. But, I told her she would understand one day when Lord willing, she was a mommy.

There was something a little different this year in Reagan's reaction to seeing her gifts "Santa" left her. You see, a few weeks ago....she asked Todd and I to tell her the TRUTH! The truth about this so-called "Santa." We did, and she handled it just like a child who was ready to hear it.
With maturity and lots of laughter!!!!! So, to hear her whisper comments like "Mom, how did you find this???"......brought joy to MY heart! She finally knew it wasn't some magical little elves in the North Pole who naturally have no problems making or finding (or purchasing) any toy they can dream up. She knew. The cost. The extra effort. The sacrifices. The great LOVE! And her little heart was grateful.

To see their faces. To see the utter joy.....excitement. Even if it's over a Batman cave and some boots. (that will most likely get dirty, broken, and /or lost in the coming year) It's what parents desire.....to give good gifts to their children. And yet, Jesus reminds us HOW MUCH MORE God desires to give His children good gifts.....if they will only ask.

My heart is heavy. I desire many things to be different. But...have I ask HIM???? (or just assumed "that's how it will always be?") I don't deserve "good gifts." Yes, I am right about that one I know. But, God is rich in mercy and grace. I know if my heart skips a beat every time my own children receive a gift they REALLY have been wanting....how much more does my own Heavenly Father dance with joy when I receive one from HIM????

I want to be like Reagan this year.....and KNOW WITHOUT A DOUBT who those good gifts came from! Thank you Lord for all the blessings in my life. All completely undeserved. Thank you for Your love which is unconditional....and for being so faithful even when I am not.

Everitt Christmas 09

2009-12-28T10:24:00.012-06:00

One Christmas down....... This year we were blessed again by having the "whole gang" together for the holidays. (generally Stan & Megan aren't able to come) It was as always too short, but we enjoyed the little time we had. This year we began a new tradition (or I hope it continues....) by playing the Christmas Eve mall game. I mentioned this in the previous post. It was lots of FUN!!!!

Here are a few highlights from our time together:

Nana & Grandaddy and ALL 7 grandkids together!

Mark (my brother), Tamara, Hannah (16), Hayden (14), and Haylee (10)

Stan (my brother), Megan, and Xan (4)

Can you say MELTDOWN???????????

Caed and his icicle sword

making food for Santa's reindeer Christmas Eve

winter wonderland!!! (along with about 100 cars stranded in the ditches)

at the mall....drawing names and clues before the game began

our gro. sacks full of "mall gifts" ready to be opened Christmas day

can you guess what clue someone had for Todd's gift? ("must be Blue in color")

Reagan

Mark, Hayden, and Haylee

sweet Xan

Hannah

Grandmother Mitchell, Caleb, & Nana

He GOT it!!!!

Grandaddy & Caleb enjoying some down time

*Todd's side will be having Christmas later this week

The perfect gift

2009-12-25T09:39:00.004-06:00

"Don't take the little things in life for granted. One day you will wake up and realize they were actually the big things."

Saw this painted on a sign at the mall last night. It spoke volumes to me, and I think I now have a small understanding of its truth.

We are here in Idalou/Lubbock with family and are fully enjoying this year's WHITE CHRISTMAS. In Texas, we aren't always guaranteed that....so when it happens....we celebrate! The kids played in it as long as they could stand. Accompanying this beautiful winter wonderland was 40mph wind! (not so fun....!)

Last night (Christmas Eve) all of my family met at the mall. Yes! You heard correctly.....we met at the mall a couple of hours before closing. We decided to do something completely different this year. A shopping game.....so to speak. There were 15 of us including all the kids, and we split up in pairs. We then each drew a name and a "clue." Some examples of the clues are: must begin with letter B......must be red in color.......must be sparkly or shiny......must be soft, etc..... Then, we had a pre-determined spending amount...and off we went! Scurrying as quickly as possible to find a gift that met the $ amount and clue. After an hour, we all met back at Santa's workshop. (we also brought gro. sacks to put our bags in so the gifts could remain as secretive as possible)

So, under our tree at the moment sit 15 grocery sacks with each member of the family's name attached. We haven't opened them yet, but everyone is excited to see the results! We talked last night after the shopping was over at HOW FUN it was. It took the pressure off trying to find
"just the perfect gift." And saved us weeks dodging the stores all this month. Just simple.....gift giving. (will post more pics later)

We want to wish you all a VERY MERRY CHRISTMAS!! Would love to be able to send each and every one of you a beautiful hand written Christmas card, but I suppose will have to settle for a cyber one. We love you all and thank you for your CONTINUED love and support for our family!!!

THANK YOU God for sending us just the perfect gift!!!!!!!!!!! Happy Birthday Jesus!

Down....but not out

2009-12-16T07:54:00.004-06:00

The sick bug crept in last Thurs. night and has made its way around our home. What began with little Caleb (viciously....I might add).....next visited Reagan......then Todd......and finally Caed. So far, I think I have avoided the worst of it.

The doctors have always told us flu season would be hard for Caed, and for us to take all precautionary measures to prevent it hitting him. However.....twice in the past year, it has attacked our family, and it seems Caed is the one who gets off the easiest. I still am confused and in awe of it....but take it as a HUGE blessing from above.

Monday night I was up late (as usual), and began to hear coughing and crying. Thought at first it was Caleb, but soon realized it was CAED! ugghhhhh! I was so hoping he would avoid it altogether. By this time, I had the drill down to a perfected dance. Grabbed wet rags, towels, and a newly lined waste basket. He was crying uncontrollably. He only threw up once, but the crying continued for almost 45 minutes. We tried desperately to figure out what was wrong (enough to warrant so much crying), and finally settled on the fact that he was just scared. I think his tummy was hurting him pretty badly, but there was tremendous fear in his mind that he was really "sick" again. Todd and I tried to reassure him everyone has had this....Caleb, Reagan, and even Daddy, and that he would be ok too!

Those 45 minutes sitting at his bedside wiping his brow and trying to console the crying took me straight BACK! Will my mind always go there? Probably so. I sat there with tears streaming down my own cheeks and a sharp pain in my heart. The memories.....of a time in my life when "hopelessness" had camped over my household. It had stolen my joy, engulfed me with enough fear to fill the oceans, took 2 of my children away, separated me from my husband, and made me have to sit back and WATCH my little boy suffer and endure tremendous pain (and not be able to "fix it.")

The tears took me back. But they soon turned into rivers of praise! Thank you GOD! Thank you that Caed just has a simple little tummy bug. Thank you that we are HOME! Thank you that he is going to wake up the morning and be ok. Thank you for your mercy on Caed and our family!

For we undoubtedly don't deserve it....................

Praise be to the LORD, for He has heard my cry for mercy. The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song. (Ps. 28:6-7)

Coming to America

2009-12-05T10:06:00.005-06:00

No, I'm not referring to an Eddie Murphy film, but would like to introduce a very special family to you.

Maybe I should start at the beginning of a 100% God -ordained meeting. I think it was back in the spring when I opened up an email from a "stranger" named Anita who was from NEW ZEALAND! As wild as that alone is.....it was not necessarily uncommon. Since starting Caed's blog, I have received emails or comments from "strangers" all over the world. Have also received many messages on Facebook from short gut moms from just about every continent. It has been amazing!

However, this particular email was a little different. I knew right away I was not talking to just "another mom." She spoke of her faith in God and how they were trusting in Him to meet such a desperate need for their little girl. Soon after birth Aria (now age 3) was diagnosed with a very rare bowel condition known as full Hirschsprung's disease. There is no cure, and she will never be able to digest food. Aria desperately needs a life-saving intestinal, kidney, and liver transplant. However, she can not get one in NZ.....but instead was recommended to UNMC (Omaha) for their wonderful intestinal transplant/rehab program. (thus the connection to us) After a few emails and several buckets of tears.....Anita and I soon began what was to be a wonderful long-distance cyber-friendship. :)

After MANY months pleading with the NZ govt for funding, the time has now finally arrived. God answered their prayer a week ago, as they will be flying to the US on Mon., Dec 7th (along with a nurse and film crew) to begin this life-saving adventure. Omaha will be their new home possibly for several years pending Aria's transplant and recovery. They have a little 2 yr. old son who will also be making this journey with them.

PLEASE join me in adding Aria to your daily prayer list. She is a beautiful little girl with such an enormous heart. This is such a HUGE endeavor for their family. Can you even imagine? All I can do is take our time/situation there in Omaha and magnify it 1000+ times!!!! A truly overwhelming ordeal. Just the fact of having a critically ill child alone can be excruciating....much less then moving to another continent!

They will be getting on a plane in approx. 24 hrs. (our time), and arriving in OMA late Mon. night. Aria is in the hospital right now in lots of pain, so the flight over will not be an easy one. I know they would appreciate LOTS of prayer in the days ahead.

You can follow their journey on their website:

aria.org.nz

God has been amazingly Faithful thus far in regards to even the tiniest of details......I can't wait to see how He continues to work out His plan!!! (and also for the day when we can finally meet face-to-face!)

I DID it!!!

2009-12-05T09:44:00.002-06:00

.....Caed's words as he burst through the door early this morning.

"and guess what?.....I didn't even have to get up during the night and go to the restroom!"

Oh....the things that give us joy!

....then his words BACK out the door......"I'm going back over there....just wanted to come tell you and Daddy the big news!" :)

A cheerful heart is good medicine..... (Prov. 17:22)

First time for everything...

2009-12-04T19:28:00.006-06:00

This evening Reagan was invited to spend the night with one of our neighbors. Caed was right there....listening....and then the dreaded question came which I was hoping to avoid.

Caed : "When will it ever be MY turn to spend the night with someone?"

Me: "...someday soon....."

Caed: "Mommy, don't I get a free night sometimes?" (we have been starting 'Free Fridays' where Caed is not hooked up that night of the week.....as a treat)

Me: "Well, actually it's tonight"

Caed: "So can I please please go spend the night too???"

Me: "Caed, it's not polite to invite yourself..."

Caed: "But, PLEASE! They will let me!!!"

I knew he was right. The Owen Family have 4 children of their own....so what's 2 more added to the mix?? ha I decided to toss all rules of courtesy out the window, and call them up. I explained the situation and tried to stress it would just be for the night and to send them back home first thing in the morning. I also knew deep down it was more than just inviting ourselves....but rather a "first" for Caed.

He spent the night with grandparents back in Aug., but only after an extensive training session on his meds and tube feeds. :) But for him....tonight is his very first sleepover!! (no family...no grandparents, but real FRIENDS!) Before he left, he kept asking me what would happen when he needed to get up during the night to go to the restroom (which he does every single night anywhere from 3-5am....due to the tube feedings). We have a monitor set up by his bed so he can call us when he wakes up needing to go. Either Todd or I then have to get up and unhook him. However, tonight I reassured him if he woke up, he could just go by himself since he wouldn't have his feedings going. I could see the nervousness in his eyes and also hear it in the extensive questioning. Reagan also reassured him she would help him during the night if he needed it. Sweet, sweet girl!

We thank you, Owen Family, for loving him the way you do and allowing him to join in (even UNinvited........) ;)

Yet another milestone

2009-12-03T07:54:00.003-06:00

Get used to this! I am going to post a picture the beginning of every month and show this number getting smaller and smaller... This was the first month since our trip to NE where we have been able to change the dose on our little blue friend. It felt so good to push that button! Once we get down to about 400-500 mls, we will be doing away with feedings all together and see how he responds. Should be about the time school lets out for summer and just in time for our next appt. in NE. At that point....we could be taking the g-tube out COMPLETELY!! I realize this news is really not news. We knew all of this in Oct. However....there's quite a huge difference in talking about it and then actually getting to do it! THANK YOU LORD!!!!

Caleb loving the book Caed brought home from school!!

For those of you who know Caed.....you know good and well he had NO IDEA he was sporting an Aggies shirt on this day!! haha His Uncle Mark is a huge A&M fan and always loves to give Caed a hard time. He was wearing a maroon shirt at which Mark took FULL advantage of!

having fun at Thanksgiving playing a serious "homemade" game of 4 square

Little Things

2009-11-29T21:03:00.005-06:00

Last night as Todd, the kids and I drove back to Celina (from Lubbock)...I was overcome with gratitude to the Lord for these seemingly "little things."

-a car that made the 600 mile trip with no problems
-a beautiful November night
-enjoyable time spent with both sides of the family
-eating some of our favorites over Thanksgiving
-our comfy warm beds waiting for us when we got home
-3 giggling healthy children in the backseat

My list could go on and on....... I have SO VERY much to be thankful for! Blessings abundant and full! These little things were numerous. And then it hit me:

Do "little things" even exist?

For me.....living in 2009 in the Bible Belt of the US, many things that I consider "little," I think truly are quite BIG! There are many millions of people who would consider getting to travel in your own personal vehicle over 600 miles (problem free) HUGE. Many would consider a warm comfortable bed to sleep in....HUGE. Being able to eat to your heart's content (and more).....HUGE. Freely going to and from church openly carrying a Bible....HUGE.

These are things we have grown accustomed to. Things we honestly feel we deserve somehow. Flat tires inconvenience us. Waiting in lines irritate us. And if we don't get what we want, when and how we want it then....watch out!

I don't want to miss ALL these blessings in my life. I pray the Lord will recall them to my memory and help me to not overlook the seemingly "little ones."

Maybe the one that hit me the hardest last night was having Reagan, Caed, and Caleb all together.....all healthy....doing what kids do best on road trips.......sleep and argue! However there were times when they were almost in tears because something had got them so tickled. A thankful heart. That's what I had. Thankful for the one full year of being back together as a normal family. And thankful to see how far Caed has come!!

Lord, help me to consider all things HUGE blessings from You!!!!!! I can no longer categorize them into big and little. Praise God from whom ALL blessings flow...................

But be sure to fear the LORD and serve him faithfully with all your heart; consider what great things he has done for you. (1 Samuel 12:24)

6 yr. well check

2009-11-24T23:45:00.006-06:00

.....sounds so good, I want to say it again!

6 year WELL-check!!!!!

That's what we did today. Our pediatrician (who first met Caed after we came back from NE) was speechless this afternoon. She couldn't get over how well he looked and acted. It was nice not having to spend half an hour talking about the small bowel and tube feeds. Caed is in the 5oth percentile in weight and 20 in height. 45 seems to be the magic number. 45 lbs. and 45 inches tall. It was quick and easy (minus the 2 flu shots)....and we were out of there in no time.

Today was just one of those days...... One of those days that I could honestly cry at the drop of a hat. A day where I became SO overwhelmed by God's goodness. His faithfulness. His provision. A day where hopelessness reared its ugly head, and then God stepped in! It was amazing.....wish I could give you all the wonderful details. However, for now.....I will just savor them and hide them deep in my heart. He never ceases to amaze me. How the God of the universe could care for little 'ole me. How He KNOWS all and how His timing is absolutely perfect. Not a second too early.....nor too late.

Thank you Lord!

Todd Birthday 11/18/09 at OneTrueMedia.com

2009-11-18T07:57:00.001-06:00

Make an on-line slide show at www.OneTrueMedia.com

On cloud 9

2009-11-12T07:49:00.002-06:00

"This was the BEST night of my life!"..........................

Caed's words as I was tucking him into bed last night. Now, you might be thinking we made another quick trip to Disney World or something along that caliber. Nope. Caed played the drums in front of 75+ teenagers last night at church. He has been wanting to do this for several months. Another time he asked us if he could do it, but got "freaked out" at the last minute. ha But, last night was different. He asked me right as we were leaving for Awanas. He grabbed his handbook and drumsticks and was set! And kept telling me....."Mommy, please don't forget to come get me out of class!!!" He did great! And in fact......wasn't too thrilled when Daddy made him stop. He would have kept playing the whole night if we would have let him. This morning he told me he dreamed about it all night. ha!

I tried to get it on video, but of course right as he got up on stage, my camera starting blinking CHANGE BATTERIES! He thinks he's going to do it every Wed. night......although Daddy is trying to explain to him that maybe he should just come on special occasions. He really is a good little drummer and definitely has some natural ability.....was able to keep a nice beat with bass pedal, snare, and cymbal.....and also threw in a little filler at the end. ha! This certainly seems to be his passion right now. Can't wait to see how he grows.........

*I will try to get a video of him playing (in his room). However, I have been having trouble uploading them to Blogger lately. (that's why you haven't seen any more Reagan Hollingsworth episodes) ha! Just call it "technical difficulties."