Friday, September 25, 2009

Good Appointment


The appointment on Wednesday, September 2, went well with the craniofacial surgeon. She said, "Momma, I think that you can quit worrying for now." Of course, that is way easier said than done. I have no idea if this is the last time we have to go through this or not. I will try to relax, though.
This past Wednesday (September 25), Si saw one of his neurosurgeons along with a large entourage of people who are from Arnold Palmer Hospital or are doing fellowships. They were a very friendly bunch and found it hilarious when I had to pull Simon out from under the chair by his feet. Dr. P did manage to extract the kiddo and tickle him into submission. Dr. P likes the shape of his noggin and wants us to return after the holidays to make sure the plates and screws are doing their thing.
Next Friday, Si has his hearing aid evaluation, and they might do the molds the same day. My insurance company does not cover the aids, but I can get a discount through a certain company. I am checking into the Lions Club. Our income is too high for their need-based program, but I am awaiting news on whether we can get refurbished aids. On October 30, he has an assessment through the Child Find program. They will look at everything, including whether or not he needs physical and occupational therapy. I know that he is good on everything but speech.
Dr. P said that lots of kids come to the cranio clinics with hearing aids. One of the fellows told me that it is common, especially with syndromic cranio. There is quite a bit of pressure put on nerves due to skull shape, which can cause some of the damage. The hearing loss will not improve, but it may be stable. I left feeling disappointed. I am still adjusting to this whole idea of hearing aids and batteries and IEPs and FM systems and lack of insurance coverage. Actually, I am feeling pretty sick about it.
I am considering again the genetic testing. The neuro thinks that it is good as the geneticist can help us to put it all together. Answers would be so nice, but I am scared of the possible blacklisting by health insurance companies. I wish that things were more cut and dry.

Tuesday, September 1, 2009

Appointment this Wednesday

Simon has been doing very well. Now that the swelling has gone down, ridges have appeared. I took pictures of the one on top of his head as it is the most noticeable, and I e-mailed them to the craniofacial surgeon. She thinks that it is likely the way the bone is shaped as they did take the existing bone above his forehead, cut it out, rotate it, and put it back on. She hopes that his head will smooth out as his skull grows. I hope so, too. I know that we should expect lumps and bumps after these surgeries, but this surgery was supposed to give his brain more room and smooth out his head with the bone grafts and bone paste. His forehead looks great, free of the dents and pulsing soft spot. We will see the craniofacial surgeon tomorrow for an appointment, and hopefully one of his neurosurgeons will be there too.
Next month, Simon will have an assessment through Child Find to evaluate everything. I have the appointment primarily for his speech, and I still have to make an appointment with the audiologist to discuss hearing aids. With school back in session, these things are getting harder to do.