Yes, I know, I went from nothing for over a week to 3 posts in 2 days. When I do something, it's all or nothing. ;-)
So... I just got off the phone with the Down syndrome clinic at our local Children's Hospital. Roo was in there about a month ago because of some concern over his weight gain. After the appointment, I posted some of the suggestions they gave... but honestly, I haven't been doing most of them. I did up the calories in his formula like I had been doing when he was first born, but I didn't start adding melted butter to his food or anything like that. I thought it was silly to just add calories and fat to his diet. He is growing, just not super fast. Right?
The doctor at the clinic doesn't agree. Our pediatrician's office faxed over Roo's height and weight from his one-year checkup, and she isn't too happy. Apparently he's gaining an average of 4 grams per day, and he should be gaining a minimum of 11-12. Now not only does she want us to see a nutritionist (something we were already supposed to have scheduled... but hadn't...), but she wants to do a swallow study on him as well. (This is because she had wanted us to increase his formula intake, and I have attempted to do that, but he is just completely uninterested in taking any more formula in.)
I'm frustrated and I'm sad. I don't want to start adding calories to a baby's diet when part of me feels like--given the fact that he has Down syndrome AND (let's face the facts here) the fact that he is related to me and Mr. Fantastic--he's likely to struggle with his weight anyway. And he IS growing. And he isn't sickly--OK, he's had his share of congestion and stuff this winter, but he is happy and growing and proportionate.
On the other hand, he's over a year old and still in 3-6 month clothes.
Am I in denial here? I just don't know what dangers we're facing. I am definitely going to the nutritionist appointment (which I DID call to schedule after talking to the doctor), but I don't know if I want to do the swallow study.
And can I just say... my baby's health is absolutely the most important thing here, but... is this all really necessary? To be very honest, my husband is self-employed, the economy sucks, and we have a very high deducitble insurance plan... and these extra tests are a little stressful for our emotions AND our pocketbook.
So here we are. I've spent the last month laughing about the suggestions the doctor made, and now part of me feels like I should have taken them more seriously... and part of me still feels like they are unnecessary and may even do more harm than good in the long run. Am I crazy for thinking that? I am not a medical person, so who am I to even think that?
Oy, I wish this were simpler.