All smiles

....this is the look I got when Caed and his Daddy walked into the house tonight after t-ball practice!!! Yea!!! We were worried because he has continued to talk negatively about playing. Just insisting that he "did not want to play this year." We have continued to encourage him and also kindly remind him daily of THE RULE where you "can't quit if you've already paid!" ha!! (that was actually mom and dad's rule) Anyway, we decided it would be better if just he and his Daddy went to practice tonight. Todd said he was a little whiny in the beginning, but stopped very quickly. The coaches were shocked (to say the least) to see him throw! He may be little, but he has always had quite an arm. ha! He and Todd are going to make a special trip soon to buy him some cleats and a new bat.

Thank you for continuing to pray about this issue. I know it may seem small, but for us.....this is such an important year. Thank you Lord for allowing him to have a good, fun practice!!!!!

Many of you have e-mailed me concerning his t-ball schedule. So, to make it easier I will simply post it (or at least the home games):

Mon. 4/6 (6:00pm) Old Celina Park 1
Sat. 4/11 (10:00am) Old Celina Park 2
Fri. 4/24 (6:00 pm) Old Celina Park 1
Mon. 4/27 (6:00pm) Old Celina Park 1
Tues. 5/5 (6:00pm) Old Celina Park 2

$179.40

...that's the difference in the cost of these two "medications" each month. And yet, they are basically the same thing. Sodium Bicarbonate. The one on the left is in liquid form, and I am guessing gentler on the gut. In some SBS patients however, the regular old stuff can cause excess gas and bloating. No one enjoys that, but I am going out on a limb here and thinking for those with digestive issues (ie....short gut), it would be worse. We have decided to give the powder a try! Again, this may seem like an odd prayer request, but this is where we find ourselves today.

We are also continuing to have a few problems with our home infusion company. I tried many months ago to find an alternative. Each and every phone call ended the same way....."Sorry, ma'am, we can't help you, but we know of a company that can..........." And of course they would suggest the very one we're trying to get away from!!!! We have had experience with this company in NE, and they were incredible!!! Top rate service! We developed a relationship with them, and grew to love our pharmacist. Our time in Lubbock also proved very positive with the home infusion co. there. Zero complaints. So far, here in Dallas, it's been more of "suck it up, and just go with it.....you don't have a choice." Although a few days ago, after talking to the Feeding Dept. with this company, I literally hung up in tears. (not a first with them) We are experiencing a new struggle in this whole ordeal. Things that were once "covered by insurance" are now no longer......according to this company. Things that my son has to have. (and I'm not talking about the latest video game) Something that is vital to his health and healing.

After a good cry, as HE always does, the Lord calmed me down and reminded me of a very familiar verse: And my God will meet all your needs according to His glorious riches in Christ Jesus. (Philippians 4:19)

These are a few of our needs. We all have them. All the time. There is always something that we are in need of. Sometimes it is tangible. Other times it is not. I know personally SO MANY of you and your current situations. Some are in need of financial stability..... healing from sicknesses that have plagued you or your loved ones for years.....clarity in decisions regarding the future and God's will for your life....forgiveness....a fresh start.....a baby of your own!

God sees all.
He loves deeply.
He provides perfectly.........................in HIS timing and through HIS ways.

Uneventful

That describes our day at the hospital. Praise God! After discussing Caed's history, lab work, and growth chart thoroughly, the endocrinologist honestly said she sees no need for anything at this point. One of the growth hormones in his body that came back "untraceable," was not a major concern to her. She said she looks at many other factors in conjunction with it, and those were in the normal range. He is also in the 20-25 percentile in both height and weight, which he has been most of his life. (I think it's just in the genes!) Caed had an x-ray of his hand (which he thought was "so weird!!").....and it came back showing his bones measured that of a 5 yr. old. yea!!! So, what was supposed to be a 3 hr. appt, was over in only 1. The dr. wants to see Caed back in 6 months to assess him again.

Thank you for your prayers! God is GOOD!!

**still no word yet on the CPK

Waiting....

......that's where we have found ourselves the past few days. Waiting for the drs. in Nebraska to discuss Caed's last blood draw. Our nurse coordinator said his CPK level was elevated. Not totally sure what that means, but she seemed a little perplexed and concerned. Todd and I are just trying to stay off WebMD.....(it can put things in your mind that shouldn't be there)....ha. So, we are waiting and praying that it is nothing.

Caed's first Endocrinologist appt. is tomorrow. It is supposed to be at least a 2-3 hr. visit at Children's Dallas. Not sure what all it will entail, but we are relieved to get this started. (growth hormone therapy) Although it has been interesting to see how BIG Caed is getting. He has gained almost 10 lbs. just this past year! (minus the TPN weight) We are seeing a "chunky" side of him that is so opposite what he has been like all his life. Not sure if it has to do with the amount of daily calories he's getting (18 hrs. of tube feeds (@ 120 ml) + everything he eats by mouth). I guess that will be a question we might get answered tomorrow.

Thank you again for all your continued prayers!!!!

The life I lead

Caed had his labs drawn last Wed. before we headed out of town. So far, we still have not heard anything. Some of these tests take several days, so hopefully we will hear something today or tomorrow.

As far as the leg pains.....I TRULY believe they are simply "growing pains." However, we are grateful to Nebraska for being pro-active in the matter. Because of Caed's condition, you just can't be too careful. Our next appt. is the week following Easter. He is scheduled for a scope (under complete anesthesia), a small bowel series (barium test), and also a bone scan. I hate that he has to continue going through all this, but tests are good. They show us what truly is going on "inside."

Although our family lives, eats, breathes Short Gut, there honestly are days I consciously don't "think" about any of it. I just administer the meds, hook and unhook, mix formula, write in Caed's poop journal.......but yet not really contemplate what I'm doing. Just becomes routine. I thank God for that! However, last night my parents and I began discussing again ALL of Caed's history, his present condition, and thoughts of the future. The last 24 hrs. have been as though I am living in it again. Several days ago, I came in contact with more "short gut" moms across the country. Hearing their story and then sharing ours......it's a mixture of great encouragement and incredible heaviness. I love talking to others. To compare. To receive more information. To be reminded again that we are not alone. The circle that Todd and I walk in.......can be a lonely one (as far as Caed's condition is concerned). Sometimes it can be hard when all others "see" is a normal, 5 yr. old boy running and playing. They assume all is back to normal. However, to talk with other moms and dads who deal daily with SBS, can be very reassuring. These people KNOW....they don't just sympathize.....they live it too! Some of our Short Gut friends are struggling GREATLY! They are fighting for their life as we speak. Some others are a step or two ahead of Caed. They provide a wonderful encouragement and "light at the end of an enormously long tunnel." Everyone is different, and yet all these precious kids share that one thing is common. Short gut.....and the difficulty of getting what little is left....to work! The one area that I have been a little discouraged by is the fact that ALL these other SBS kids began their struggle at birth. I have yet to meet or hear about another child that experienced a spontaneous malrotation like Caed. He seems to be in a field all his own. While there are numerous similarities, there is also a HUGE difference for me. I knew Caed for 4 1/2 years as a healthy, normal little boy. All of the other SBS kids I am in contact with (probably 20-25) all had their first surgery within hours of life. As difficult and unfair as it may seem, this is the only life they have ever known. Sometime I wonder which is worse, but am quickly reminded they BOTH have their down-falls. Every illness, despite the timing of the diagnosis is excruciating.

Just a few minutes ago, I got a call from our dear friends (the Free's). Kensley's central line has broke now a 3rd time. She is being wheeled down for surgery right now. Their plan is to take out her NG tube and replace it with a G-tube (while she's under anesthesia from the surgery). To hear J and Tana's voice......to hear a Mommy's heart being torn into again. Sometimes you just feel you can't "go on" when yet ANOTHER problem arises. I know from our experience with Caed, sometimes these "setbacks" are actually blessings in disguise. Please continue to pray for sweet Kensley. Her 1 yr. birthday is just around the corner. What an amazing, strong, little girl!

*We have also had a wonderful time seeing old, familiar faces this week being back in Lubbock. Yesterday at church, Caed and I got to visit with his former GI dr......Dr. Higgins.....and then we got to eat lunch with our sweet Nebraska family (Carol and Cordell). They were in Lubbock visiting their daughter and family. All of these people have become so dear to us. Each one had an instrumental part in helping us get through this past year. God is GOOD!!!!!!!

Something or nothing

Caed has been suffering with leg pains (primarily) the past 2-3 weeks. Todd and I came to the conclusion that it was probably just "growing pains." We have heard stories before from other boys in particular that had similar struggles around this age.

However....because of Caed's condition, we just can't always assume the "norm." NE informed us after this last month's lab draws that "he is on the dry side." (dehydration) Not enough that the drs. feel he needs extra IV fluids right now, but we just need to watch him. Now....after several nights waking up crying in pain, we thought maybe it could just be leg cramps (from dehydration).

NE feels it could be simple "growing pains" too, but would rather error on the side of caution. They are worried about his hydration and also his potassium level. They want Caed to have a DEXA scan (bone scan) because Short Gut patients tend to "steal" calcium from their bones to supplement their blood levels.

So.....it could be something.....or it could be nothing (growing pains). The last several nights have just been hard watching him cry in pain. (seems to be getting worse each night) It will never be the same for us. Our minds always "go there" and the memories of many months of him in severe pain are still haunting. Watching your child suffer is one of the hardest things a parent could ever go through (as SO many of you know). We're just praying nothing more serious is wrong. I guess this is simply another reminder for us that Caed's condition is a chronic one.........it will last a lifetime. Sure, we pray that just as he is doing now, he can live as "normally" as possible, and yet recognize we will always be dealing with the SBS.





Reagan and I had a wonderful evening last night. We met Bergan and Angie at the American Girl Store in Dallas for Bergan's birthday. The girls had so much fun!!!! Bergan is staying with us a couple of days, and Reagan is thrilled that after all this time....Bergan finally gets to be at HER house! We will take Bergan back to Idalou tomorrow and stay a few days there in Idalou/Lubbock for the remainder of Spring Break.





Happy 9th Birthday Bergan!!


"Tory" and "Mia" at the salon.




Sweet memories

Fun times

camping out in the playroom



ice cream break
(Caed.....with his "special" lactose free flavor) ha



finally big enough to wear his brother's boots



just being cute



Mr. Frog wasn't being very cooperative

Faithful friends

Be joyful in hope, patient in affliction, faithful in prayer. (Romans 12:12)

As we have shared numerous times this past year, Todd and I (and the rest of our family) have been overwhelmed at the number of people, churches, "strangers" that have faithfully prayed for Caed. We have been abundantly blessed by the generosity of others who gave and supported us during the last 12 months. The list would be endless.......literally! I know that many of you continue to pray for him daily. I can't possibly put into words what that means to a mother's heart! We thank you!!!!!

However, there has been a very special group of people (Fellowship Church in Lubbock) that have embodied the verse I posted at the top. We do not have a previous "connection" with this church. They were just one (of MANY!!) that heard about Caed and literally took us under their wing during the months spent there in Lubbock. We have received a card just like this EVERY SINGLE WEEK for almost a year!!! Not only have they prayed.......they visited, they gave, they called......for an entire year! Even though we have only met 3-4 members of this church, we feel a great connection to the whole body.

Dear FCL - We truly cannot say thank you enough for your faithful prayers for Caed. What an incredible impact you have had on my life! What an example you have been to me. It's easy to pray and care for "friends." But, you.....(complete strangers).....have taken us in like we were one of your own. You have loved us like we have known one another for years. And you have prayed.....fervently....faithfully. We love you so much and thank you for everything!!!!! May God bless you above and beyond.

Not just any practice

Caed had his 1st T-ball practice this morning. Although it didn't go quite like we had hoped.....all I could do was thank God. Last year on this day, Caed was in PICU. He couldn't walk or eat, was hooked up to every possible tube and monitor, suffering with tremendous pain, trying to regain strength after experiencing a major trauma to his body, and was literally fighting for his life! Thank you Lord for reminding me today HOW FAR You have brought him!

Caed struggled during the majority of the practice. He said he "couldn't breathe" once they started running the bases. Apparently that scared him, which started the crying (that lasted the remainder of the practice). We had a long talk with him, and are praying that next week will be better. Caed has struggled ever since we have gotten back home with "new things." (church activities, etc....) After the initial time, he is much better and seems to "fit back into his old life" with no problems.

We are praying the same will go with t-ball. He was SO excited this morning before practice. Every 5 minutes, he would ask again "how much longer??" You would have thought we were getting ready for the World Series in this house! There was an extra measure of excitement in the air. Not only was our little boy starting something new......it was more than that. We almost lost him a year ago, therefore little things like t-ball are no longer considered just a regular "extra-curricular activity." It is a testimony to our Lord who answered earnest, pleading prayers to heal our son. HE IS FAITHFUL!!!!!

Please pray for Caed's emotional state. 98% of the time, he is great! No problems! However, once in awhile we experience days like today that just "come out of no where." It doesn't make sense to Todd and I, and we get frustrated very easily. We don't know yet the balance of when to extend mercy or tough love. Caed's situation is obviously different than what we would do for Reagan or Caleb. We're just still learning. Caed has wanted to play on a real team for so long. He is such a good little athlete, and we know he will LOVE playing this year. Even though "t-ball" seems like a strange thing to ask for prayer about, it is quite honestly what's on our hearts. It's a big deal for Caed and our family this year in particular, and we simply desire Caed to be able to have this simple experience. Please pray for him to have courage and confidence.

Day at the zoo

Today was Homeschool Day at the Fort Worth Zoo. The kids and I along with some good friends took advantage of this beautiful day (84 degrees!) and also the much needed Vitamin D for Caed. We had a great time and of course the kids loved it. However, I was telling Todd after we got home that I know they loved going......but these two kids have been to "the zoo" about 8-10 times in the last 6 months! (we went weekly in Omaha)

Caed also had his monthly blood draw on Wednesday. He did great! We haven't heard yet the results. Please pray for his vitamin / mineral levels. Several of them have been slowly dropping over the last few months. (Vitamin D, zinc, & copper primarily) He is currently taking Vit D and Zinc supplements, so hopefully those are beginning to level out. His weight is up to 42.6 lbs.










a few of our homeschool friends



in the stage coach




*Thank you "Giblin Girls!" We had lots of fun with you. Thanks for helping me out with Caleb (primarily). We'll have to plan it again sometime.

Zoo Pics

ice cream break

FYI - Caed isn't supposed to have fruit, veggies, water, or SUGAR (causes his diarrhea to be worse). However, we have learned that if given with his meal (meat...potatoes....bread....rice.....), he handles small amounts well. We also allow him to have small amounts of sugar for special occassions like today! He ended up throwing the majority of this ice cream cone away.

One year anniversary

One year ago......we sat in the Surgical Waiting Room at 3 am in utter disbelief that our "baby boy" was undergoing major emergency surgery. I know now how much the Lord protected us that night....if we'd only known then what the next 364 days would be like.......

One year ago.....our lives as we knew it changed forever. Sometimes the unthinkable doesn't happen to someone else....it happens to you!

I have thought so much about this day. I began wondering months ago what this day would be like. Would it be filled with sorrow having to relive some of the worst moments of my life? Or would it be filled with gratitude to the Lord for ALL He has done, and the way He carried us through it? I would have to say....both! There have been moments today that I literally felt sick to my stomach....no appetite and no desire to carry on a "normal evening." I just couldn't get those awful thoughts out of my head. As much as I tried to convince myself...."think of something else, Lori!!".......the more those images were burned into my head. However, I then began to realize maybe that was a blessing in disguise. Maybe the Lord wanted me to relive some very painful memories to show me HOW FAR HE HAS BROUGHT US!!!! To consider His mercy. To dwell on His provision. To thank Him for His Sovereign Hand. And now......to TRUST!

Trust in yet another year that will inevitably throw us a few curve balls.

Oh, if I could turn back the hands of time. Turn it back to just one year and one day. What would I do differently? Would I hold my children longer at bedtime? Would I not be as "busy" with those mundane daily chores and just play a game with them? Dance in one of their many shows? Stop long enough to soak them in....really soak them in! Get to know these precious gifts given to me only a few short years ago. For one thing I know for sure now.......they are not ours! They are on loan from a Father who loves and knows them much greater than I. How long will we get to keep these beautiful gifts? Only He knows. So instead of living in regret and wishing to turn back the hands of time, Lord.......help me to live each day passionately. Let me always see the small things. Help me to slow down. And allow me to truly get the most out of the gifts You gave me.

To think back from March 1st 2008 to now......and count all the ways we saw God in every detail........wow!, there just wouldn't be time or space to cover them all. I truly get overwhelmed just considering it. What an incredible God we serve! The fact that He works like that. Not just the big stuff. No...in every possible minute detail. Isn't that amazing? Thank you God that you love us so much and do indeed have wonderful, exciting plans for our lives. And You choose to do so by using the details. Let us be more mindful of that, and learn what it really means to TRUST YOU! Thank you for using the tough times for our good. Help us to see Your Hand working us through the refiner's fire. The sole purpose.......to make us more like Jesus!

For I know the plans I have for you, declares the LORD, "plans to prosper you and not to harm you, plans to give you a hope and a future." (Jeremiah 29:11)