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.

1 comment:

  1. he is just beautiful. i found your blog off of baby center- my daughter had ALCAPA too. she had surgery to repair it and then surgery to repair her mitral valve. our prayers and love are with you. we give addie goat's milk. i wonder if that would be easier on his stomach. or Hemp Milk is great-- lots of calories and good fat ratio, but addie didn't like it. just a thought. love from california,
    danaklein@mac.com
    dana

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