Wednesday, April 19, 2006

Just thought I would send a quick note to let you know how James is doing.

Basically he is doing really well, but not much has changed. He continues to have a distended belly and lymph nodes in the groin area ... but in character you would never know there is anything wrong with him. He has not vomitted for over 1/2 a week now, so this is a good sign (I guess). He is actually more energetic then before, exploring, climbing, your typical boy stuff. ... likely due to the fact that he is finally getting enough calories in a day. We are happy to see that his face has filled out a bit in the last week, and he's looking healthier. He is currently surviving on mostly a liquid diet of a high calorie formula, he dabbles a bit with solids, but hardly worth counting the calories he gets out of the 1-2 bites here and there.

The dietician came yesterday. We sat down to go over what we have been doing and how he is doing. His weight is back up to 19lbs 8oz. When we first brought him to the hospital he was 19lbs 5oz, and while in the hospital the lowest it went was around 18 1/2 lbs. So we're making progress in that area, he has to gain back to where this all began, but he was already behind then, so we have more to go. The dietician said we were doing pretty much all that she would have suggested at this time, so she's going to have to get together with the Occupation Therapist (OT) to see how they can work further with him. But before they start working on getting him to eat solids he needs to put on more weigh as right now he's still behind and they don't want him losing again. A couple pounds sounds like nothing to us, but to a little guy, that's 10% of his weight ... it could take a bit. So right now they are encouraging us to continue to get as much as possible in him via this formula. We were happy to hear that we will receive this formula for free ... this was a great relief after purchasing the first case of it and finding out it cost $3.08 for 7.5 oz ... and he's drinking around 30 oz a day. Ouch!!! And I used to complain about have a 15 month old on regular formula. But for all it costs, we can see the difference in a child who is getting what he needs in a day now. We were also advised that he likely never slept through the night because he was calorie starved ... sort of like a sugar shock for a diabetic. I had always figured this, seeing as he was so frantic in the middle of the night until that bottle hit his mouth. It's not likely we'll have him sleeping through the night anytime soon, although they are encouraging to put him on a Plus formula (even more calories) at bedtime to help with this. She had said twice a night was acceptable, the third time give him water in the bottle and he'll learn fast enough. We'll let this theory go for a bit longer as we really don't know how he's feeling, but after that ... once a night and then water!!! But even twice a night is a relief right now ... considering there have been nights recently that I've been up every 2-3 hours. It's a battle to determine what is due to illness, what is hunger (he has some catching up to do) or what is plain spoiled little brat!!! But, I think we're making progress as he's slowly getting back into a regular routine.

But all in all it is a relief to have a happy and content little guy again, but yet the uncertainty still weighs on us. Next week we see the Pediatrician, and the OT will be coming out as well. After that, the dietician and OT hope to come at the same time and work together on balancing diet and behaviour.