The McCone's: September 2011

Hey there again! Trent is off work today and Cannon is asleep in his arms, so this is my chance to write a quick blog!
Well, Cannon has been out of the hospital (his 2^nd stay) for almost 2 months now. He’s been home and doing great. He is continuing to look better as far as his liver function levels go. He doesn’t look near as jaundice as he did. He had a Dr. appt. with his G.I. Dr at ACH on Sept. 22. They all thought he looked GREAT! His lab work also showed that his liver is doing great! As I had suspected, but didn’t want to get too excited over in case it wasn’t doing as well as I had thought! His direct Bilirubin had come down to almost normal. It is .6 (normal being from 0-.4) This was a big change from his last appt. His total Bilirubin is 1.0 and is in the normal range! His liver is functioning well and repairing itself! God is answering prayers!
At his last G.I. Dr. appt. we learned that they wanted him to keep his g tube until the spring. We were hoping they would let him get it out, but they want him to have it during the winter just in case he gets sick and doesn’t want to eat so he can still get his nourishment. As bummed as we were that he couldn’t get it out, we definitely agree with the Dr's. And feel this is a wise thing to do. He is after all high risk for illness. Please pray that this will be an easy winter for him and that he won’t get sick!
He is continuing to gain weight wonderfully! His dietitian has finally decided to let us let Cannon sleep as long as he wants in the night. Well, as long as he does not want to sleep like 10 or 12 hours without eating. As of now he’s doing about a 7 hour stretch at night without eating. So we are getting a little bit more rest. However, I am still up and down with him all night long even though he’s not actually up to take a bottle. He has to burp often due to his reflux and T.E. Fistula, so I am now sleeping in his room with him. So when I hear him squirming around in his bed I have to get up to burp him to keep him from refluxing milk up through his nose. So I have a lot of long nights of getting up and down to burp him. The nice thing right now is he doesn’t really wake up so he goes right back to sleep when I lay him down! (Knock on wood that is how it will continue to go until his reflux gets better!)
We were promised by his dietitian and G.I. Dr. that when his direct Bilirubin was at 2.0 or below he’d get to go on a different formula. One that tastes BETTER! FINALLY! Poor child has been drinking some yucky stuff mixed with his milk since his last hospital stay to help him put on weight. So we were excited to try out his new formula yesterday! He LOVES it. We went from fighting on some of his bottles with him spitting part of it out to he isn’t hardly dribbling a bit of it out of the side of his mouth! Ha-ha! I hated having to give him that other stuff, but I had to get some weight on that kid! Anyways, he’s not looking back! Ha-ha! The unfortunate thing is we had just gotten 6 or 7 cans of his old formula! I don’t think he will finish those off at this point! If anybody knows anyone whose child is on Pregestimil please let me know.
As of yesterday Cannon started on solid foods! This is a major milestone for him because the Dr's. Keep telling us that as he is able to take more solid foods his reflux will get better! He let us know VERY quickly that he HATES plain rice cereal! So I mixed some pears with it and he LOVED it! He also loves plain pears! It’s really funny to see him try to take food off a spoon. He’s a little used to a spoon because that’s how I give him his prevacid, but the new texture is confusing him a little bit. But he’s acting very excited about these new foods he’s getting to try! I am so excited to see him enjoying them and am praying that as he gets more his reflux truly will get better!
He is quickly outgrowing his newborn clothes and some of his 0-3 month clothes he has been able to wear! I know, I know…We have a 6 month old that is still wearing newborn clothes?!?! But hey, he’s come a long way. First he started out not even getting to wear clothes. Then he made it to preemie and stayed in that size for a while! Now he’s stayed in newborn size for a while too! But now that he’s gaining weight better it seems I looked at a few of those 0-3 month outfits and thought “oh those would be huge on him!” Now I’ve looked up and had to dress him in all of them this week because they are getting tight on him and he hadn’t even worn them yet! Ha-ha!
Cannon is finally letting us put him down some! In my last blog I wrote that he wanted to be held all the time. While he still prefers to be held, he is letting us put him in his swing and bouncy seat a little more. He does not really want to take naps anywhere except on someone! Which is fine by me because most of those naps are taken on me, and we all know I need a nap too! Like I said before, I’m up and down all night. And yes, that is making me SUPER exhausted! So I do not mind the extra nap I get when Cannon needs to snuggle up on me in the recliner!