JJ is at least gaining. This was a gain of 5 oz in 2 weeks. I think it will really pick up now as he has eaten better the last 3 days. He really enjoyed mac and cheese at Pearce's restaurant tonight. We might have to get the recipe!
I have been fortunate enough to email with a woman who has a 16 year old with ALCAPA repaired, the same defect that Jerry has. She found my blog through google and commented and we went from there. She is the first person I've "met" in the same situation and it has helped a lot to email with her. I read her blog and it I have to say it was kind of amazing. I felt much more emotion (fear, sadness, tension) more strongly, than I felt going through everything with Jerry. It is like a component of detachment that serves as a survival mechanism I guess. With Jerry, I really can't completely accept what is going on and still function in the best way possible to take care of him and our family. When I mentioned this to Jackie (mom of child with ALCAPA), she understood.
Here is something from Jackie's email on the whole eating issue:
Eating was a big issue. You have my sympathy. She came home with an ng tube and had it for around a year and it took some time to wean her from it and on to a proper diet. There were days when I thought she would never eat normally, she eat tiny amounts and was so fussy. These days she eats well in quantity; it isn't very varied, but you know, she's a decent weight, well in herself so I'm not going to worry about it. She doesn't seem to remember anything of it but I think there are some underlying control issues and maybe some deep, bad memories about how eating made her feel as a baby. The drs say sucking would have given her angina so I think they must relate food to pain on some level.
It is so hard to hear about and be reminded of all the pain JJ has gone through. Of course, we were in agony already because it was obvious something bothered him about eating since he was diagnosed at 3 weeks old. It is still hard to have it confirmed and know that every time we tried to feed him he knew pain was coming. And the way he would start to suck and then back away changing his mind. My poor guy had to decide if chest pain was better or hunger pain. Tough. Hopefully, this will be all behind us soon. We are always tinkering on the edge of needing that ng tube and maybe things would have been better or easier earlier on if he did have it. But I am glad we haven't and hope we won't have to go there.
Pictures and videos hopefully this weekend.
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