Nicholas had an appointment at MUSC with the cochlear implant surgeon and the audiologist. We have to do a hearing aid trial before we can go forward with the implant. The audiologist made molds of his ears for the aids. She said that when they come in she will put them on and do a quick test in the sound booth then have us come back in about a month to do another sound booth test. If there is no respone, which we doubt there will be, we can move forward with the implant. If he does show a response with the aids we will have to do more testing to see how much he can hear with them and if it is enough to not have to get the implant. The FDA requires the hearing aid trial in children. If there is any chance that aids will allow him to hear and they do the implant, the little bit of hearing that is there will be ruined. We don't think they will work but we can't avoid this step. Now we have to try and get funding for the hearing aids. They cost about a thousand dollars each so we really don't want to pay out of pocket and insurance won't cover them. There is an organization that will provide funding for Medicaid patients. His Medicaid, that he got for a year, runs out at the end of the month. I called the organization and have to wait for them to call me back to set up an interview. I've applied for TEFRA Medicaid which is based on his disability rather than our income and it is still in the approval process. So if we can't get them funded this month we have to try going through Baby Net which is the early intervention organization. MUSC does provide loaner aids but we are responsible for the cost if they are lost or broken. So once we get the funding for the aids we will go back to the audiologist to start the trial.
PT and OT started back up today. His physical therapist went to a conference this weekend about a product called Theratogs. It is a vest that helps retrain the muscles to work properly. She thinks this will really help his trunk muscles, which are weak and causing him to have a weak neck and not be able to sit yet. She has to get funding for this too. She is going to try to borrow one and take pictures of him wearing it and not wearing it to prove that it is helping and try to get the funding sooner. It could take up to a few months. The website is http://www.theratogs.com/ if you want to look. His first OT appointment is tomorrow. Nothing else is going on this week.