Reach

Reagan choir

AWANAS award night

Remembering His faithfulness

One year ago today.....

-the drs. believed it was crucial for Caed's emotional and mental well-being to allow him a 4 hr. pass out of the hospital. (after being there 59 consecutive days)

-Caed's tube feeds were only at 14 ml/hr (approx. 3 tsp.) continuously.

-He walked in pain

-His g-tube drained continuously to give his stomach a break (from throwing up so much)

-He could not eat by mouth, but only sipped on small amounts of water

-He did not talk much, and had lost his "spirited" personality

-Caed was suffering emotionally from Post Traumatic Stress



Today........

-Caed is home

-his tube feeds are at 120 ml/hr for only 16 hrs a day

-He can do FLIPS on the trampoline pain free

-His g-tube remains closed when not on feeds

-He can eat anything (within reason of his sbs diet)

-He talks and laughs continuously

-Caed shows NO signs of PTS


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. (Psalm 28:7)




Taste and see that the LORD is good....... (Psalm 34:8)

Latest Report

Heard from Nebraska today. I will try my best to summarize all the info:

• overall tests came back good...nothing needs to be changed at this time.

• his small bowel series did report an area of narrowing/stricture - but this is most likely helping him, not hurting him. The reason is because the narrowing is slowing his transit time down, so food/fluids are getting "caught up" in this area. (slowing things down and making it easier for his intestine to absorb.) This "back up" is also not causing him issues with bacterial overgrowth. They said he may run into problems with it down the road - the stricture could lead to dilation and the need for a bowel lengthening surgery, or it may not do anything. As Caed gets bigger, so will his intestine....not so much in length but in diameter. They told us about another patient they have that is Caed's age that has had a "functional obstruction" for a few years, but is thriving and has not needed surgery. The good thing about Caed's bowel is that it was "normal" prior to the volvulus....it was already able to absorb nutrients.....unlike most patients who have intestines that have never been used.

• Vitamin levels are improving.

• His bacterial overgrowth was very minimal - nothing that needs to be treated with antibiotics.

• come back in 6 months (Oct.) - possible need for another scope, but this time they would do it just for bac. overgrowth (not biopsies), and will attempt it without anesthesia by placing the scope through his g-tube site. (aspirating some fluid from his bowel and then taking the scope out)

So.....in one sense, we have much to praise God for! Overall, everything looked great! They continue to be amazed at how well Caed looks. But, in another, this report was just one more reminder of how this will never be over! My heart is so heavy tonight. He has come so far and made such huge strides. Even today (while I was taking Caleb to our pediatrician), the dr. commented on how wonderful Caed looked and how "no one would ever know he was "sick." It's so true! He looks, acts, everything.....like a normal little 5 yr. old. And yet, getting reports back like this and being told more surgery could be a possibility....or that he currently has a stricture.....OH, how I just wish this were only a bad dream! Don't hear me wrong. We have SO MUCH to be thankful for. I absolutely know that and also know that Caed's future has not be foreseen by any medical professional. We have NO idea what his future holds or doesn't hold. The Lord could mercifully and miraculously heal his body completely. With no medical explanation. I believe that! I do!! It's just my sinful nature rearing it's ugly head and seeds of fear and doubt taking root. I can't go there. I can't worry about something that hasn't even happened yet. Satan is taking this "good report" from the doctors and turning it into something awful for me. I am not going to allow it.

SO.........THANK YOU God for Your healing hand in Caed's life. Thank you that he "won a dance competition" at AWANAS tonight and was so excited to show me his "golden trophy!" Thank you for Sugar Free snow cones and the simple fact that he can enjoy eating them! Thank you for my little "rocketman" t-ball player and the strength and athletic ability he is able to use! Thank you for his contagious laugh, hilarious sense of humor, and the way he lights up a room!

....but most of all.....THANK YOU for sparing his life, for bringing him this far, and allowing me to be his Mommy! You are GOOD!!!!!!!!


sharing his favorite snow cone (#51 - Sugar Free Strawberry)

He's moved up to his new "bigger" bike..........hasn't slowed down a bit - in fact he's probably faster now.

1st cut

I know it doesn't look like it.....but yes, Caleb got his 1st haircut this morning! We were worried that if we cut it, the curls would disappear. Now, we may not have cut enough to really know for sure, but so far....so good. I probably cut a good inch off, and it still looks like this. ha!

Devin's story

If you missed Nightline last night.....you can still watch it online.

www.abcnews.com (click on Nightline at the top) You actually need to watch Part 2 first....then Part 1. (I think they got reversed)

Anyway, it really touched us. I cried through the entire show. I guess it just hit a little too close to home for me! We were SO close to this one year ago (after Caed's 3rd bowel resection) when the drs. felt a bowel/stomach transplant was the only option left for Caed. I PRAISE GOD everyday that He slowly began healing him over the course of the summer. I know Caed is not completely out of the woods. With Short Gut, you just never know. This is something he will live with for the rest of his life. We can only continue to pray for God to grant him mercy and ultimate healing.

Caed actually watched most of it this morning. He kept wanting to see Devin's "tummy" (intestines). He had lots of questions regarding his own surgeries, and thought it was so cool that Devin had a g-tube and central line just like him!! Hope it was a good idea to let him see it. I know he does not fully understand what all has happened to him, but I love showing him other kids that wear backpacks or have g-tubes, etc.... Helps him to feel he's not the only one. That's why Devin has become so special to us. He is the only other child (boy) Caed's age! And his mom has helped me so much in understanding this illness. Thank you Colleen!!! What a joy it would be if some day we could meet!