Tuesday, November 30, 2010


I have been such a bag blogger lately. I have to go back through my appointment book to do all Nicholas' updates. We have also been bad about taking pictures so I'm using phone pics. Lets see, going back to the beginning of November, Nicholas had an ultrasound of his gall bladder. The gallstone is the same size. He sees the GI doctor this Friday so we will find out what his plan is. He had his 2 year well visit on the 11th. He was 21.5 pounds and 30 inches. He gained good weight since his last visit but his length is concerning. If he still isn't growing much at his next well visit in 6 months he will have to see an Endocrinologist. Besides that his doctor was very pleased with him. He had another swallow study on the 22nd as requested by the feeding therapist. The therapist doing the study said that he has a texture/sensory issue with his mouth. He is swallowing fine, so that is good. His feeding therapist wants to go over it with both of us and decide what to do. She thinks he is going to need about 2 hours of feeding therapy a week. We made an appointment with the Neurosurgeon because he had some swelling on the valve of his shunt. The doctor decided to adjust his shunt to drain faster and do a follow up CT in a month. He has had a big bulge of fluid where an old burr hole is every since they moved the shunts to the other side of his head. The bulge went down to about half the size it was and no shunt malfunction so hopefully that did the trick. I thought they should have done that like 6+ months ago but whatever. Logically to me, it seemed like the fluid wasn't draining fast enough so it was going out any path it could take, hence going out the old burr hole. We'll see what he says after the follow up CT and office visit. Nicholas still hasn't gotten his Synagis shot. That has been a huge mess. His insurance is based out of Florida and they have to ship the medicine to the doctor's office rather than letting the doctor use what they already have in stock. The insurance will only pay 50% of the expense and the shots are about $2500 each. He needs 6 of them so that would be $7,500 we would have to pay for the remainder. He has SC Tefra Medicaid and they would normally pay the remainder but since the medicine has to be sent from a pharmacy in Florida, SC Medicaid won't pay for it. So I don't know what is going to happen with Synagis. That's about it in updates.

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