Monday, February 02, 2009

06.19.2008 - Growing Boy

From Julian's COTA journal.

Well, I never really thought I'd hear the words I heard today from Julian's Nephrologist..."You can pare down his calories a bit...." For a boy who we had to fight to get 800 calories per day into, Julian is gaining weight a little TOO quickly! Now, granted, most of it is calories he is getting in his 20-out-of-24-hour continuous feeds through a nasal-gastric tube. But nevertheless, the boy has gained about 6 lbs since his transplant...and for someone who only weighed 25 lbs, 6 lbs is basically a 25% weight gain! He is beginning to ask for food outside of his formula feedings as well, which is good and normal. I didn't want to push him on eating "on his own" because I didn't want him to get a oral food aversion. Well, turns out he loves corn, he loves bananas, he loves cheerios with milk, he loves Trader Joe's Kettle Corn, he loves black kalamata olives, and he loves green olives. These are things he asks for on a regular basis. It is very common to walk past the olive bar at Andronico's (I go when it is the least busy, as the Doctor's don't really want us in crowded stores or restaurants)...and hear "I want an olip". He is unusual in that he likes very savory olives, blue cheese, soy sauce, marmite, etc. What a curious child! He's like his momma in that way.

Health-wise, the Doctors could not be more pleased about Julian's post-op recovery and are very happy with how well he is doing. His creatinine is holding steady at 0.4, down from 0.5 when the stint-removal-swelling was at it's peak. They are anticipating it will go back down to 0.3, which is where it was before they took the stint out almost 2 weeks ago. The fluid that had collected on his kidney is dissipating as well, as the swelling is reduced.

We have settled into the Ronald McDonald House and are blessed to be able to stay here for the long-term while the Doctor's at Stanford watch Julian's progress. It's likely we'll be here until at least October, as that will be the 5 month mark and the immune-suppressant IV's that he has to get twice a month will be over.

The other day his cheeks looked flushed, and I worried whether or not he had a fever or high blood pressure...only to realize that it was only normal little boy coloring, with red rosy cheeks. He has been anemic for so long, I was used to seeing him very pale. It was an "a-ha" and "Thank you Lord" moment.

Thanks for your continuing prayers as we continue to be led through this time.