Thursday, February 17, 2011
JJ is eating much better in the last few days....still not normal amounts but really good for him. I took him off of the whole milk we were trying to mix in and maybe it took a few days for that to have a good impact??? He has not been breathing hard in the morning or with active play for the past 3 or 4 days. Before that it was almost every day, especially in the morning. When I see these things I can just fantasize that a miracle is happening and at the next visit his heart will be better. They told me he is past the stage when his heart would improve (scar tissue resolving) but maybe he can at least stay stable and have less episodes of breathing problems. Maybe the increase in heart med is helping him. So many maybes.......
Sunday, February 13, 2011
Still trying to connect with Dr. Towbin...the specialist in Cincinnati. So for now we are just status quo and happy for every day without a flu or virus. Mostly Jerry seems OK. He often breaths hard in the am and doesn't have much energy. He still sometimes runs around like crazy but seems to stop himself when he is tired and out of breath. His eating is pretty horrible lately. It generally goes up and down but he is usually interested. He just can't seem to take more than a few bites sometimes no matter how badly he wants whatever incentives we have offered him. It is really hard to see and I am sure he wonders why he can't always enjoy eating as he sees everyone else doing. He ate about a half cup of past and butter today which is pretty good for the past week. He may be feeling better since we stopped mixing in the whole millk that was making him constipated. He still drinks his gentleease infant formula and seems to have a real problem everytime we start mixing in tiny bits of regular milk. When Isaac couldn't drink milk because of sensitivity we used rice milk. It doesn't have any fat and won't work for Jerry.