Saturday, January 31, 2009

Fighting for my life


The dust is finally settling from the storm that unexpectedly ripped through my life almost one year ago. I have been busy putting everything back in its place and trying desperately to resume some "normalcy." We have officially experienced our 1st week. All our belongings from Lubbock have finally made their way back home. No one is staying with us anymore to help out.

All is as it should be...................

....and yet I am struggling.

I know this makes no sense. Caed continues to heal. He is doing wonderful. All three kids have settled amazingly well into our "new life." There is no major drama occurring. (Praise God for that!) And yet, right now I feel as though I am drowning. Drowning in the fact that we ARE home, things ARE going well, and everyone expects me to simply "jump in and move on." I truly do not understand my feelings. The analyzer that I am is screaming for reasons. What is it? Why do I find myself caught in this "depression?" I think the hardest part is that I can't figure it out and yet I have to keep living life. I have to keep doing the normal, everyday things.....with a smile on my face and answer the daily question...."Yes! I am so glad to be home!" I know people truly care and yet truly do not understand. I don't even understand. We are home, so that should equate "all is well." Right?

Wrong. I have been surviving on adrenaline (i.e. stress) for the last year. Maybe now that it is "all over,"............I need to finally be able to grieve. I say these things, and yet have no idea what that is supposed to look like. Nor for how long. I just know that I have never struggled with feelings like this......ever. I have experienced several panic attacks this week, and don't have a clue why. I am fighting having to live in the "normal." Having to pretend. It's absolutely excruciating.

I was blessed by growing up in a home that was very encouraging and optimistic by nature. "There is ALWAYS a silver lining......." to any situation. I can go back and read my blog posts from March, April, May........Sept.....and even on the hardest days, I can see where I tried desperately to find the good in it. To acknowledge that although I was struggling, I knew WHO was in control. I knew WHO had a glorious plan for me and the rest of my family. I knew WHO "works all things for good..." I still know these things. I know them in the depths of my heart. But, I don't feel them now.

I guess that's what happens when you become numb.

I covet your prayers. And ask for your patience. This isn't anything anyone can "fix." I just need time. Thank you and I love you all.


Wednesday, January 28, 2009

Baby steps....and I'm not referring to Caleb

If I have heard the words, "Don't get overwhelmed....it'll all get finished eventually!" once....I've heard it 1000 times. And I love all of you for this simple, yet encouraging statement. However, by nature....Lori tends to get overwhelmed way too easily! It's in my DNA, I guess. I have never lived in an immaculate, germ-free, mess-free house....yet it's what I desire. Order. I want it so badly, and feel I am a better wife and mother when I have it. Yet it seems so far from my grasp. I sat for 4 days after my mom left....just staring at the boxes, the piles, the mess. I didn't even know where or how to begin again. However, last night I had a "revelation:"

Just make a list (I LOVE lists!!), and pick 1 or 2 jobs to accomplish that particular day. Once you have done them, stop. Relax. Live. Enjoy your family.

So....that's what I have done today. We were ''iced in" here this morning. Schools were canceled. Being a home schooler though, we don't have "bad weather days." But, I decided to give the kids the day off, and allow them to have a free play day, so that I could begin tackling my 2 jobs: 1) finish unpacking the rest of their school stuff, reorganize it, and begin new lesson plans. 2) tackle the boxes and piles in Todd and I's bathroom. (It's absolutely dreadful!)

The rest of the mounds are still there strategically placed around our home. There are still 3 giant boxes which sit in our entryway that have only been "looked at." And yet, thank the Lord......I feel peace! Peace knowing "it will get done.....eventually." Peace knowing I can function and be a good wife and mom and still have "mountains of madness" lurking at me with every turn. Peace knowing we are home, happy, and healthy.


Just when you get a cabinet organized.....look what happens! Actually, I can't blame Caed for this one. His little brother was the one who emptied it, which then only made him tempted to make it his "hang out" for the day.

Sunday, January 25, 2009

He's going...he's going....he's gone!



For his Nana, Grandaddy, and Grammy

A Mother's rite of passage

They say pictures are worth a 1000 words. Yep. I think I could come up with about that many on this one. Only wish there was sound to go with it. This was Caleb (not literally) from 1:30 - 4:45 last night. I have NO idea what was wrong, but I think I tried to cover all the bases. (bottle, diaper, Tylenol, ear drops, teething tablets, rocking, singing, walking, pulling my hair out) I have only experienced one other night similar to this with him, but my mom was there helping out. We ended up loading in the car and driving to WalMart at 2 am. Of course, I also had some short nights the 2 weeks after his birth, but nothing like this. I know every mom is due several of these "midnight bonding moments" with their babies at some point or another. (Steve and Angie....I remembered your experience w/ Bergan and kept checking his toes! ha!)

As I sat rocking Caleb last night something jumped out at me. Stacey, I remember you posting a comment early on when Caed was at his worst. You apparently experienced "one of these" nights with your little one and you said thinking of Caed made you put your sleepless night in perspective. Thank you for your words. Not only then, but especially now. The Lord used your simple statement to get me through a tough night myself. I have missed out on so many things with Caleb, and all-nighters are one of them. (my mom and dad took care of those for me) That may sound crazy that I would miss something like that. It's probably not that I missed having to get up through the night, but rather missed the "experience with Caleb". Believe me....I had my share of sleepless nights with Caed this year. He definitely made up for it.

I guess fear will always be there. Caleb would cry and cry.....get quiet...be ok......and then start back up again. (for 3 solid hours) Caed did this similar thing the day we took him into the ER. Our minds will always go there. I know it will...............

Saturday, January 24, 2009

Goodbye sun...


...hello COLD! Gotta love Texas. 80 degrees yesterday....30 today! No wonder everyone is sick. The kids played outside a little while this morning, but decided it was just "too cold." We've spent the majority of the day hanging out here. This was the first day in a long time the 5 of us were here together "just doing nothin'." It was nice....

Our unsung hero

I have thought over and over how the "true hero" of this whole experience has been our sweet Reagan Ashley. All of our lives were effected in some way. We all experienced hardships of different kinds. But....the one that stands out most is little Reagan. She was young enough to easily adapt in every situation, and yet old enough to know something very wrong was happening to her family. I can remember a time it was just she and I driving, and she began asking questions while tears flooded her eyes. My mom recounts a similar instance in which she cried and expressed how much she missed her brother. She has had to go through SO much this year. Not necessarily more than any of the rest of us....just different. She is at a difficult age. Doesn't know everything....but enough. Not only was much attention drawn to a new baby, but also another brother very sick in the hospital. I felt so many times like she was the one getting put on the back burner. Not intentionally. The other 2 just demanded more of us. I had to be away from her way too many weeks. Reagan may not be able to express in words what she has gone through, nor really understand it herself. But our prayer is that the Lord would use this experience to make her stronger. That it will always be in her heart, regardless how old she gets.

For Christmas Reagan asked for an American Girl. Long story.......but we finally were able to go get her doll last night. It was a special time just the two of us. She was so gitty. Poor Reagan has been waiting patiently this whole month. She told my mom a few days ago that she was SO excited about getting her new doll, but didn't want to "bother" either of us with it because she knew we were so busy unpacking. About broke my heart. So, we decided she had waited long enough. We drove into Dallas and went to "the" American Girl store. There are only 5-6 in the US, so this was a big deal. You would have thought we pulled up to Disney World! She searched and searched and finally found just the perfect doll. She wanted to find one that looked just like her! I think she succeeded. After we shopped, we went upstairs to the "Bistro" and had a wonderful dinner and dessert. They even have special chairs for the dolls to sit in. Too cute! Then, we walked through the Galleria and just had a fun Girls' Night Out.

I love this little girl so much. She brings me incredible joy, and I am humbled and honored I get to be her Mommy. Thank you God for this indescribable gift!




finally found the perfect one!


Reagan and "Tory"


Having fun at dinner


The Bobsy Twins

Friday, January 23, 2009

Turning the page


... A new chapter in our lives began today. As my mom backed out of the driveway, such tremendous sadness swept over me. We have been together for almost a year. I can honestly say, my mom is one of my best friends. My heart physically hurts knowing we are officially apart now. I am not there with her, nor does she have one of my children. Even the 3 months in Nebraska, though we were separated, there was a tie knowing she was taking care of Reagan and Caleb. This is something I have fought for the past 8 years. Feeling wrong for missing our families as much as I do. My heart aches when I see my friends (from Edna or Celina) have close physical relationships with theirs. Holidays....Sunday lunches....ballet recitals....just the day in day out moments that my children's grandparents are not apart of. Not because of choice, but rather hundreds of miles. I am learning to accept the fact that this is the way God created me. Lori. He fashioned me and designed me just the way I am. He put desires in my heart that I cannot ignore any longer. However, He also chose for me a Godly husband who has been called to the ministry. That in itself generally requires "moving." So....what am I to do? I have fought it. I have struggled more than anyone will know. The pain is great. The Lord has been speaking to me loudly these last couple of weeks. Yes, there still is a hole in my heart, but it has now been covered with PEACE! A peace that I cannot explain. God's peace. A calming in which I know everything will be ok.

After my mom drove away, the kids and I stayed outside for awhile. As I sat...I watched. I saw 3 beautiful children "home at last." Together. Playing. This was a big moment for me. Finally..... I felt like I was the mother of 3 children. Scenes from the past year flashed in my head. ER. - hospital bed - pain - tears - surgeries - frustration - grief - anguish in missing my other children and husband - medicines - tubes - backpacks - Idalou / Lubbock - doctors and nurses - Nebraska - airplanes - an empty house - saying good-bye - boxes - trying to find my life again.......



.....all the while watching my kids play. Innocently. Oblivious. I was experiencing both pain and joy. Pain from the past. Pain from being so far from family. Pain in the loneliness. Pain in feeling misunderstood. Pain in the unknown. Yet, JOY in seeing Caed happy, healthy, alive. JOY in seeing my "baby" grow up and all the "firsts" he is experiencing. JOY that he is finally going to know what it's like being apart of our little family. JOY in seeing my beautiful daughter and how proud I am of the way this year has changed her. Made her stronger, more mature. JOY in seeing her be a "big sister." JOY in knowing Todd would be home soon. All 5 of us! Together. JOY in the anticipation of a new year. What will it hold? What memories will we make? JOY in knowing we are in the Father's hands. JOY knowing HE (and HE alone) has brought us through this terrible storm. JOY knowing nothing can ever separate us from His love.





Now for another big prayer request. We all knew this day would come sooner or later. A day my family has prayed for and yet also desired not to come. A day that would leave holes in the hearts of some loving and devoted grandparents. The day when we (physically) did not need them any longer. That sentence was hard to write. Because I do not ever think there will come a day when I do not NEED them! However.....physically needing their presence in our home or caring for our children has gone. Like I said before, this is something we have all prayed for. Our family to be united and together again....just living normally. And yet, sometimes answered prayer also comes with it great pain. My parents and Todd's mom have done more for us than I could possibly ever communicate. It is truly overwhelming!! It has been a picture to me of such great love and sacrifice. I have apologized to my parents for making them "put their lives on hold." My dad has reminded me numerous times......"Lori, you all ARE our lives! We would have had it no other way!" I know that. I believe that. And yet it still is hard to accept. When someone makes tremendous sacrifices for YOU! It's very humbling.

Please pray for our parents. They have literally raised Caleb from birth!!!! I feel like we are an adoptive family who has taken a baby away from it's foster parents. Crazy. But, literally....they have spent more hours with him than either Todd or I. As his mommy, it breaks my heart, but more than missing his 1st year....it is harder knowing I am causing pain to them by taking him "away." I know they would argue, and I know they are happy that we are all finally together as a family. But....it doesn't take away from their natural human emotions of missing a little baby that stole their heart!




Just as God has been Faithful thus far......we know He will continue to do so even in this.

For the word of the LORD is right and true; He is faithful in ALL He does!! (Psalm 33:4)

Thursday, January 22, 2009

Soakin' up the Vit D

God answered our prayers for sunshine! It was a gorgeous day. Caed even pulled out his swim suit and decided to play in the water. I know our sweet friends in Nebraska are in shock. Have no fear.....here in Texas we can have a beautiful spring like day one minute and a blast of winter the next. Looks like this weekend we are due for some temps back in the 40's. I told Reagan and Caed they were not allowed to play inside today. Wanted Caed to soak up as much sun as possible.

My mom is still here. We decided we could get a lot done if we just had "a couple more days." We basically gutted the playroom....and turned it upside down. It's still not finished, but is in MUCH better condition. She is planning on heading out in the morning. :( We will sure miss her tons!! Already looking forward to the next time we'll be together. (whenever that is)

Todd and I are going to try to go out tonight since we have a free babysitter still here. We sure have needed some time away. Been a very long year!!


He lined up his riding toys and gave them all a good wash.















Wednesday, January 21, 2009

Another milestone

Tonight was a big night for this little boy. He made another small step towards "normalcy." Ever since all this happened, Caed has been very clingy to me. I remember right after he was discharged from the hospital in May, I could not even leave the room without him making awful groaning noises. (this was during the time he didn't speak much) He eventually overcame his fear of being away from Mommy.....HOWEVER, in certain situations (ie. Sunday School, AWANAS, children's choir).....he has been struggling for quite some time. When I would try to take him, he would cry and beg me to not make him stay. What is a mother to do? I struggled deeply not knowing what the best stragedy was for getting him back with his friends (alone). What was going on inside him? Was there fear? Was he self-conscious of his backpack and tube with his "old buddies?" Was he afraid something might happen and Mommy wouldn't be around to fix it? Or had he just been away for too long? It might be none of these and I'm trying to dissect something that doesn't need to be analyzed. Or it could be a combination of all of them. Who knows? I decided the best thing for me to do was not push. Just be patient with him and realize he will go when he is ready. (And I needed to stop worrying what others thought.) So, tonight (AWANAS) I told Reagan to go get ready. When I went outside to rally her in, she ran up and told me "Mommy....Caed said he wants to go to Cubbies!" I was shocked, but outwardly tried to remain unaffected by her comment. The whole way to church I kept thinking once we got there....once we stood at the doorway to his classroom, he'll back out. He'll beg me (again) to let him go upstairs with the youth. It didn't happen! He walked up, went right in, and never looked back. Yes, I was shocked, but also knew that it had to be HIS decision. In HIS timing. And when HE was ready, all would be fine. Just like before. I know this may not seem like a very big milestone. But, to us it is! Things in Caed's life took a turn upside down. Everything!! The big and the not so big. When we begin seeing the pieces fit back together just as they were a year ago.....then we call it progress. Praise God!!!!

enjoying "store night" at Cubbies

Listening during story time




Another cool thing happened tonight. Caed received a very special gift. One of our youth has a brother who plays football for Tech (Adam James)..............son of sports broadcaster Craig James. Anyway, he got several players to sign Caed a football. (Harrell, Crabtree.....just to name a few) Thank you SO MUCH for continuing to think of him!! It means more than you'll ever know!

the guys giving Caed his football

Guns UP!!!!!


**Caed had his blood drawn today. Daddy said he was very brave. They weighed him at 41.2. When we were in NE 2 weeks ago, he was 42 lbs. However, once again we are dealing with the difference of scales. (frustrating) We bought (hopefully) a good scale today, so maybe we can begin to measure his weight more accurately here at home now. ???? We'll see. I just never trust these home scales too much.

Monday, January 19, 2009

Caed needs the sun!

Found out today that he has a very low vitamin D level. They said it is common with short gut because most are missing the part of the bowel that absorbs this fat soluble vitamin. Caed will need to start taking a vitamin D3 supplement daily. However, they said the best source of it is simply the sun. So....we are ready for winter to be over and spring and summer to get here. The more time he can be out playing in the sunlight....the better.

During our last NE clinic visit, Caed had lots of extra blood drawn. One thing they wanted to recheck was his growth hormone level. The last time they checked it was when we first got to NE when his labs were out of whack. So, today I heard from our nurse coordinator and she said it once again showed NO detectable growth hormone. We will go ahead with the Pedi Endocrinologist. I was sure hoping things were better in that department. Oh well. It could always be worse.

We had a fairly productive day with the house. Things are slowly getting back to normal. I owe so much to my mom. She has helped out tremendously!!!! Her plan as of now is to leave out Wed. sometime. I know she misses home (and my dad), but I am sure going to miss her!!!! We have been together (except for the 3 mos. in NE) for a whole year! She came here to our house a few weeks before Caleb was born to help me get things in order and ready for a new baby. Little did we know what the future held..................... God is gracious that way. We may fight it and beg for Him to show us what's in store, but He knows we couldn't handle it. He knows that it is best for us to simply live in the present. And to take one day at a time. Even now, I find myself worrying about tomorrow and the ones that follow . I am wasting my energy. He hasn't promised me "tomorrow" but He has given me TODAY. I need to make the best of it!!

Sunday, January 18, 2009

Hold You High

(look closely....you can find Caed-man on the front row in a striped shirt. He absolutely LOVES stuff like this....especially the BAND!!!!)


....the theme from our Disciple Now weekend. It was (as usual) an incredible 3 days! There is always so much leading up to this annual event for our family. It is by far Todd's busiest time as a student minister. We don't get to see much of him the few weeks leading up to it, but it is so worth it in the end. Todd truly has a gift in organizing events like this. (right down to every minor detail) This weekend was amazing, and the Lord was faithful. His presence was inevitably felt and I believe He touched every heart (in some way). Many students were saved and even more re-dedicated their lives to Him. Oh, how I needed this weekend!!!!

The kids and I "moving back" (officially) this week was difficult in the sense that Todd was not around much. Like I said before, this is his absolutely busiest week of the year. I found myself questioning the timing. However, I found out rather early into the weekend that it was definitely a God-thing. My mom is still here helping us get "settled." Therefore, it allowed Reagan, Caed, and I to go and be apart of D-Now much more than if I had Caleb by myself. I am so thankful for her and HOW MUCH she has helped me this past year and continues even today.

With all that being said......we did not have as productive of days as we would have liked. D-Now began Thurs. night and it was go...go...go...ever since. I am hoping we can really make lots of progress the next couple of days.

I have had so many people tell me not to worry about getting everything done. "It will eventually happen." Yes, good advice. I agree. However, I wish I could invite you all to my home so you could see for yourself what I'm talking about. Maybe it's just my personality, but it is very hard for me to resume "normal life" (stay-home mom of 3....one baby.....one ill.....and one homeschooled) if things are in total disarray around me. Having to live out of suitcases and boxes is not fun. It doesn't really seem like "home" when you can't find anything you need and you are tripping over boxes at every turn. We were not even able to get everything in this trip. My parents' neighbor (Russ) will be in the area soon, so he is graciously going to deliver the rest to us then. Also remember that the majority of all the boxes and tubs are filled with things that are new. They do not yet have a "home" here. So, we are having to go through everything (can I stress that again??? - cabinets, drawers, closets....every inch of this house!) to get rid of the old and make room for the new. It is an overwhelming task, and even more so when you couple that with D-Now weekend. ha! And, no....my mom will not have to stay forever! I think if we can have a couple more really good productive days, I will feel much better and be able to feel "settled" in my mind and then start trying to resume normal living. Whatever that means.

Tuesday, January 13, 2009

Home again...

It was a long day, and we are all exhausted. We pulled into Celina late last night, and have spent today slowly making our way from room to room. Our home was filled with mountains of boxes from Nebraska, and now we have added even more. My mom and I decided this morning to just tackle one room at a time. Today was the kitchen. I can't even tell you the number of trash bags that we filled!!! A lot has to be gone through when you've been away for almost a year. Plus, it's just nice to be able to do some 'spring cleaning' a little early this year.

Yesterday leaving Idalou was very emotional for me. Probably spent the first couple of hours in tears. Yes, I was happy to be coming back to Celina and seeing Todd and our family being together....but "Idalou" is home to me. I moved there when I was in the 4th grade. Graduated high school there and then even went back after college and began teaching in the same building I once attended. My family and friends all still live there too. I have a history there. People know me. I know them. Things are familiar, and every street has a memory attached. Those of you fortunate enough to grow up in a small community (where everybody knows your name...ha!), know that you may grow up and leave the town....but the town will never leave YOU!

As we were pulling out of my parents' driveway, a deep sadness flooded my soul. I know many reading this do not understand. I should have been ecstatic....overjoyed. I was finally (really) getting to come back home. However, as we made our way through Idalou, we suddenly found ourselves in heavy congestion. A family was having to bury their 15 yr. old son yesterday. The whole community literally paused and came together as only those small towns do. As we drove past the cemetery, I couldn't help but think......"that could have been you, Lori!" And yet, for some reason the Lord had mercy on our son, and guess what? I was finally getting to bring him HOME! Something we prayed for over and over. The Lord showed me that this was a day of rejoicing for our family. He turned our mourning into dancing. Caed is healing. He is doing things today that he was not able to even 6 mos. ago. He is a happy, energetic, alive............little 5 year old boy. So even though it was initially a sad day for me, the Lord opened my eyes (through someone else's pain) to show me His GOODNESS. To show me how He answers prayer, and that He has us in the palm of His hand (wherever we are!)

Sunday, January 11, 2009

Packing it all away

It's 2 am....I should be asleep. I am both physically and emotionally exhausted. The past few days have been tough. I have had to pack away my 2008. Not only is this house becoming more and more empty.....so are our hearts.

As I began with my clothes, I came across outfit after outfit that reminded me of darker days. I can specifically remember wearing each one of them day after day at the hospital. Oh, and let's not forget the "black jacket." Those of you who came to visit us during the month of March (particularly) probably thought that was the only thing I owned. I wore it out!! To look at it now......I hate it. (no offense Marnie - it was one of the many maternity clothes she let me borrow) There is not one single good memory from that jacket. Those first few weeks were the darkest, and I literally wore it every single day. Do I dare admit where I have kept my earrings? Do you REALLY want to know?







........in a urine specimen container! I stuffed it in my purse on March 1st when the ER physicians wanted us to collect a urine sample from Caed. His body was in shock. He was in renal failure. Let's just say it never happened. So....I was left with a small sanitized container that perfectly held my jewelry. It's worked great.....but not a day goes by that the painful memory from that night doesn't pop into my head (as I put on my earrings, of course). I could go on and on how every little thing I have had to box up has some very difficult memory attached to it. I have honestly had a sick feeling in my stomach all day.

Next, comes the packing away of Caed's toys. Let's just say.....he has "quite a few!" ha! With every box of crayons, dart gun, race car, or board game also came with it grief. As I sat taking his toys off the shelves, my heart was about to explode. I held the little yellow gun that made him smile for the first time. The memories of that night!! Ones I will never forget. Honestly there was a side of me that wanted to literally throw all of it away. There is pain in seeing some of them again. However, I would quickly remember WHO gave it to him and the love and prayers that were sent along too, and it turned my sadness into joy. Thank you all again for loving Caed. For thinking of him, and wanting to send him something that you thought would cheer him up. It did!

Next came Reagan's stuff. There were similar memories with hers, however they were all good. Boy, did she have a fun year here at Nana & Grandaddy's house. We turned the basement into "her hangout," and there were hundreds and hundreds of hours spent playing babies or putting on Hannah Montana shows down there. Even with the door closed you could still hear the bass thumping from any room in the house. She and her cousin Bergan became inseparable. They are such good friends and the Lord truly blessed Reagan by sending her Bergan this year. He knew she was just what my little girl needed to get through a VERY trying time. My mom and I were just commenting tonight how sad it makes us to see Bergan's bike sitting in the garage. We are really going to miss her (and seeing them together). Thank you Gunter family for taking her in! You are one more example of how the Lord was in the tiniest of details. We are honored that Reagan spent the time that she did in your home!!



Where do I even begin with little Caleb? This honestly is the only "home" he has ever known. He came when he was only 2-1/2 wks old. Not only has he grown up here, but also with his Grandaddy & Nana beside him every step of the way. They have all but raised this child. I am forever indebted to them for what they have done for us. I know not many grandparents would have offered to do what they have done. I love them SO much and can't even imagine going through this past year without them! I honestly do not even have words to say that would adequately express my heart. I will not even try. (please pray for my parents as they will be experiencing the empty nest syndrome for the 2nd time in their lives).

My heart is heavy tonight. I am struggling more than anyone can possibly realize. I sit here with my hands frozen......... I can't even find the words to share what I'm feeling. There is SO much inside....and yet nothing will come out.

It's ok. My heavenly Father sees through every corner of my heart. He knows. He cares. He comforts as only a Father can. He reassures.

Trust in the Lord with all your heart. Lean not on your own understanding, but in all your ways acknowledge Him.....and HE WILL DIRECT YOUR PATHS. (Proverbs 3:5-6)

Thursday, January 8, 2009

A shock to my system

"Go get your coat, Reagan. It's winter!!!..."

...I yelled out as we were heading out the door this afternoon. I took 3 steps outside and my body literally went into shock. After spending the last 5 days in Nebraska............well, need I say more? I'm not sure what the high was today, but when we got in the car, the temp read 72!!! All I could do was think back to yesterday morning at 5:30 as Caed and I were bundled up pushing our way through the "arctic blast of wind!!" Oh! it was cold!!!!! Everytime we got into our rental car, the heater was cranked to "BROIL." Today, I found myself doing the opposite. ha!

We ran some much needed errands this afternoon, and the plan is to spend the next couple of days going through this house and attempting to pack up everything that belongs to us. Can I remind you that Reagan and Caleb have been living here for almost a year! Caed and Reagan first came here on Feb. 22, 2008. Caleb then joined the household a week later.

When we left here after Thanksgiving, we did not have the room to load up everything. We thought it was more important to simply get HOME.....without the stress of having to "move" too. I wish you could imagine your life this past year.....try to think of EVERYTHING you used during it......probably couldn't pack it all into a few suitcases, huh? (and don't forget you have 3 kids too) My mom is planning on coming with us to Celina for a few days to help out. I was able to go through a few closets, clean out most of the pantry, and unpack all the boxes from Nebraska a few weeks ago......but oh!, do I dare say we have only touched the surface. I am actually feeling ok. Yes, a little "unsettled" and overwhelmed at all the packing that has to be done, but I'm just ready to finally BE HOME! Our time in Celina the few weeks of December was only a tease in my mind. I knew with the holidays and our trip back to NE, we would only get to be "home" a short time. Now......things should finally settle down a bit (Lord willing!!).

I do pray we can rest and have a "quieter" 2009.

*I will continue to blog. (I'm addicted now...ha!) Caed's story is far from over!! And I will always have "something" to share. Just may not be an everyday occurrence........thanks for continuing to read (and pray for our family) even if the "drama" has faded. We love you all!!!!

Tuesday, January 6, 2009

Great report

Today's appt. went very well. The drs. were extremely pleased with Caed's progress. Like I stated before, our goal was to get to 120 ml on tube feeds, however his stools have definitely showed it. Greatly increased in frequency and lack of consistency. The drs. were not alarmed in the least and actually expected it. They said we have pushed his little intestines pretty hard the last 2 weeks (increasing by 20 mls), and now we just need to 'give him a break.' Allow his gut to catch its breath. They also cut 2 more hrs. off his feedings, so now he is only hooked up 18 hrs./day. That's wonderful!! We made a few adjustments on some meds, but other than that......everything looked great. Labs, weight, etc..... We also will only have to draw blood every 2 weeks for a month, and then if all looks good, will go to ONCE a month!!! yea! His next NE appt. will be early April (we're stretching it to 3 months now). Todd plans to be here for that one. Caed will have to undergo a scope and small bowel series. Lots of testing....not fun....but necessary.

Our day was a little hectic, but ended sweet. This morning and afternoon I was literally on the phone or internet continually trying to solve some Home Infusion problems. Not sure anything really worked out the way I wanted, but feel ok with it now. Caed was so patient with me while I worked, therefore I decided after I was done the 2 of us needed to 'hit the town.' We ate a great supper and then headed to the movies. It was fun just the 2 of us. Made me realize how much I need to do that more with each of the kids. We had a great date!!

Our flight leaves very early in the morning. Not looking forward to that, but know it will be worth it not having to waste the whole day traveling. Can't wait to see Reagan and Caleb again. It's kinda strange. I've only been gone 5 days, and yet I feel like it's been 5 weeks!!! I guess it's just the environment I'm in. Causing old emotions to resurface.

Better go hit the sack. Going to be a short night!!!

Thanks again David and Allison! You have been a huge blessing to us!

Monday, January 5, 2009

Snow..............

......where did you go????

We are back here in Nebraska, and Caed was so looking forward to seeing snow and going "sledding!" ha! Our nurse coordinator had been telling us of all the snow they had received, but apparently it decided to go away when we came. However....let's just say for these 2 Texans....the snow (I mean, "ice piles") along the sides of the roads and under the shade are good enough for us! We arrived here Friday night and have only been able to get out twice. Yesterday we had to stay in because of icy roads. It has definitely been a harder stay this go round: 1) cold weather 2) no big sister to play with! Fortunately, this stay will be significantly shorter than our previous (5 days compared to 11 weeks!) It has actually been fun being back and seeing familiar faces. We are staying here at the Lied again.....different floor....different room, and yet we feel as though we are back "home." Because of the exact same floor plans, it seems like we are in the same room. When we first got here, Caed immediately ran to his "toy drawer" and was a little shocked to see all his toys had disappeared. ha!

Today Caed had to endure the dreaded blood draw. This one was a little worse than the previous weeks. They needed "lots of blood" for some extensive testing. Tomorrow we will meet with the IRP team for a checkup. When we left here the end of Nov., Caed's tube feeds were at 100 ml/hr. The goal was to get him up to 120 ml by this appt. We are there! However, his output has doubled in the last week, and they are now completely liquid in form. I feel like we have taken a big step backward. I guess that's something we will discuss tomorrow. Outwardly, however...Caed is still the same. He continues to make everyone laugh and is a joy to be around. Thank you Lord for this!! We plan on flying back to Lubbock Wed., will get Reagan & Caleb (and a load or two), and start the drive home this weekend. I know Todd is sure ready to see us! He will have been alone (again) for 2 weeks. Hopefully, after this trip, we can finally settle down and just be home (and together!!).

Thank you all for your continued prayers and words of encouragement. They mean more than you'll ever know.


Caed at his favorite park here in Omaha. Looks like snow, huh? Well, the picture is deceiving. It is solid ICE!!!!!!!!!







**found out today that my Granny's husband (step-grandad) just passed away. It's only been a month since her death. Please just keep all the family in your prayers.