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.

Tuesday, November 16, 2010

Sunday, November 7, 2010

Halloween and Medical Update

The Friday before Halloween we went to Boo at the Zoo. They decorate the zoo and have activates for kids set up at night. Nicholas enjoyed the lights. We borrowed a wagon and he just chilled in it while we pulled him around. We got so many complements on his Nemo costume. It will be a lot more fun in a few years when he can participate. They also put lights up at the zoo for Christmas so we will probably take him to that too. On Saturday I brought him to Publix to do some trick-or-treating and show off his cuteness. On Halloween we went trick-or-treating around our neighborhood. It was really disappointing. About 85% of the houses didn't have their lights on and weren't giving out candy. It was nothing like when we were kids. Next year we are going to have to figure out a better place to go.

Nicholas had a CT of his brain and an appointment with the neurosurgeon. The radiologist red flagged his CT because his ventricles looked a little enlarged. The neurosurgeon sent him to get a shunt o'gram (x-rays looking at the shunt tubing) and an ultrasound of his belly to look to see if it is draining alright. Everything looked fine and they compared the new CT to one from right after surgery. The ventricles are a little bigger but they get bigger with his regular growth so they are going to leave the shunts alone. He isn't acting like anything is wrong with them, which is good. They are going to do another CT in three months.
He also had an ultrasound to look at his gallstone. It is the same size as is was during the last ultrasound over the summer. He sees the GI doctor in the beginning of December so we don't know what they are going to do about it.

His speech therapist is going on maternity leave so we have been trying to get into the clinic that does AV therapy, which he needs for the cochlear implant. That has been a huge hassle. They changed the one time slot they have open on us about 5 times. We were finally able to get him in Wednesday mornings. We have to push OT back a little bit but we should be fine. He also started feeding therapy last week. The therapist said he has one of the worst cases of texture issues on his tongue that she has ever seen. She watched him play with his toys and noticed that ones that have texture cause him to make a face or cough once he gets them to a certain point on his tongue. We have never noticed that. He will put anything in his mouth beside food so we didn't think it was a texture problem. He is fine with smooth things. She said this is going to be a very long process and a lot of hard work to fix. We have to figure out why he has the texture issue and since he can't tell us that is going to be hard to figure out.