Tuesday, November 30, 2010

19 Months

The 28th came and went and I forgot that Dean is now 19 months old! We weighed and measured him and it turns out that he lost weight again this month. :( I'm guessing (hoping?) it's because of his eating strike in the last week or so, but still, it's annoying. I know that later on with this crazy syndrome, I will not be complaining about needing to cram calories in him, but that's where we are right now. This is the part you hear less about.

It makes me think of when Dean had his G-tube and we spent 8 hours a day trying to get food into him. We still have to hand-feed him all his liquids since he won't do it himself, and we feed him six times a day to get everything in him. It affects us going out because sometimes Dean won't eat when we're out and then we get even MORE behind with calories. And again, Dr. Miller won't increase Dean's GH dose until he's consistently gaining weight (since the increase would further boost his metabolism). So we're looking into ways of getting his intake up. Thinking about adding Carnation Instant Breakfast to his milk. I really don't want him to have the extra sugar, but other methods are not really working. :/ I'm so exhausted from feeding him all day long!

Dean continues to make progress with speech. I'm pretty sure he consistently says, "baby," just that it sounds like, "bay-ba" when it comes out. We'll take it! We're at a bit of a plateau with gross motor *milestones*, but he's getting stronger, so we consider that progress. I'm getting better about not comparing him to others his age (although it's sometimes still hard) or others his age with PWS (even harder). I try to focus on the progress, because really, that's all we can hope for.

33.75" long
11.66 kg (about 26 lbs. 11oz.)

Here are some fun pics from yesterday when the boys fingerpainted together for the first time. Well, Cole fingerpainted and Dean *mostly* decided to crawl through the paint. :) He thought it was hysterical. I didn't care since the paint was washable. :)

Bathtime. :)


Mary said...

I'm SURE you've tried everything... a good friend of mine had a nutritionist recommend butter for her kid with PWS who also had trouble gaining weight when she was little. I remember thinking "what about avocado, salmon and nut-butters?" I'm not sure I was supposed to give Oscar nuts under two but I did...

How does Dean do with thicker liquids? I make smoothies that pack in all kinds of calories -- first I blend walnuts till they're really fine, then add plain greek yogurt, a dollop of orange juice concentrate, frozen blueberries, banana, and milk. All of the kids love it of course but everything is super healthy (though yes a lot of natural sugar). And you can't even tell the walnuts are in there.

Also curious what Dean's percentages are? Years ago we had to "fight" doctors to realize that we weren't shooting for the same % for height and weight because kids with PWS have so much less muscle mass that they can be "overweight" at a normal height/weight ratio. Oscar is 50% height and 25% weight and has been there for many years. We never had to deal with him losing weight (he lost % points but not lbs) but I can imagine that is really stressful!

Ali Foley Shenk said...

Hey Mary!
We're going to try coconut oil in Dean's milk per the advice of another PWS parent. We definitely do avocado, which Dean loves. Nut butters are tricky because Cole is allergic to peanuts and is not supposed to have any nuts at all. We don't even keep things with nuts in the house. Multiple people have suggested smoothies or shakes so I should try those!

Dean's percentages are fine. 90th or so for length and 50th for weight. The issue is the change in weight from month to month; he's had two months now where he's lost weight instead of stayed the same or gained. Not good. Dr. Miller oversees his weight and although she would ideally love him to be a little lower in the percentiles, she is content with how he is looking and he's been at 50th percentile for weight since he was born! Cole is the same. Must be genetic! :)

Mary said...

Coconut oil sounds like a great plan. And sorry I forgot about Cole's allergy -- I think you told me that before. I'm curious why Dr. Miller wants Dean to be lower in %tiles? With his height, 50% for weight sounds great and he does look good. Hoping the weight loss stops soon. I remember too well how stressful this was for my friend.

Ali Foley Shenk said...

Oh my gosh, no problem! I wouldn't expect everyone to remember Cole's peanut allergy.

Dr. Miller prefers to keep weight closer to 25th percentile so there is wiggle room for when their weight starts to shoot up. But she's content with where Dean is, and his insistence on hugging the 50th %ile curve shows that *he's* content too. :)