Thursday, September 11, 2014

Cochlear Implant Working Again

We had an appointment with the audiologist today. She was able to trouble shoot Jack's equipment and get him hearing again. The microphone was not working properly. I had called Advanced Bionics numerous times and they sent me a new microphone and a new processor but I could not get it to work. The audiologist reprogrammed the processor. She also had to turn the program down in volume when we used the new microphone. The new microphone with the old program was causing Jack to cry and blink his eyes. It was much too loud. We are going to have to turn it up slowly again.

I met with his speech pathologist at the school after his audiology appointment. I showed her everything we are doing. I also showed his teacher how to put it back on him if it comes off (happens all the time) and how to turn it off and remove it before he gets on the bus. He can't wear it on the bus because the microphone is a choking hazard.

Jack started his physical therapy (at home) yesterday. It went ok, but he was very tired since it kept him from his early nap. It is hard to fit all the therapies, school and the naps in. He is not a happy boy when he misses his nap. Jack is a great sleeper. He goes to bed at about 6:30 and sleeps until 7:00. He usually takes a nap around 10:00.

I am retired now but I am busier than ever. I am hoping things settle down a bit once we get used to the new fall schedule.

Friday, September 5, 2014

School Started!

We enjoyed the last few weeks of summer. We were up in Pennsylvania for the weekend and had a nice time. There was one strange event. Jack's left ear, the one where he lost the implant, often bothers him. The incision behind his ear has a raised red spot. It has since he had the surgery to remove the implant. He has been seen by numerous doctors, and no one thought it was infected, it is just raised in one spot and redder there. He was rubbing the spot and I looked at it and saw something hanging out of it. I touched it and it came out completely. There was no resistance, There was also no blood, pus or any other fluid. It was his electrode. The doctor has said he would leave it in as a "place holder" but it came out on its own.

I emailed the doctor. He said it happens sometimes. It was not anchored to the implant since that was removed and it worked its way out. He said I should just put bacitracin on the spot. He also said we should schedule Jack's re-implantation soon since he no longer has the electrode in the cochlear. He didn't think it was a big deal, but I must admit it was pretty creepy. It is about three inches long. Super weird to have it just come out of his head like that. It did not seem to bother him at all though.

Both Jack and Julianna had their first day at school. Julianna started first grade on Tuesday and Jack started the Hagedorn Little Village School yesterday.

Julianna was a little sad that some of her friends are not in her class this year but she seemed excited to meet some new kids. Her teacher is only going to be her teacher for this week and then will be leaving on maternity leave. She will have a permanent substitute for the rest of the year. I am hoping it will be the same person all year. They are all still pretty little and need some consistency.

I took Jack to school yesterday. He has a very small back pack and he looked super cute with his little name tag. He can walk a few steps but I had to carry him. He went straight to the toys. His teacher seemed very nice. He is going to have eight kids in his class but they were not all there yesterday. The vast majority of the kids in his class are former preemies. I think Jack might have been born the latest at 26 weeks. He has a 23 weeker (with a twin in the other class), a 24 weeker and two 25 weekers. They all have different issues. The class is focusing on developmental delays (physical) but it is going to have a primary focus on language. Jack is the only deaf child in the class.

I spoke to Jack's speech therapist. She will be assisting him two times a week at school and one time a week at home. I asked her what her thoughts on teaching Jack sign language are. She said it should be avoided and we need to concentrate on the auditory verbal approach. Every speech pathologist and teacher of the deaf we have worked with has told me this. They feel he needs to hear and listen first. He can learn to sign at some point but it should not be first. I that they all have a tremendous amount of experience and they base their opinions on the current research. My problem is that so many of my family and friends disagree with this. They go on and on about how this is wrong and I am not doing the right thing for Jack. They all talk about how they did baby sign with their kids and it was the greatest thing ever. I agree. I did sign with Julianna. However, it is very different when the child is deaf and has cochlear implants. It is a very specific type of learning.

Jack is getting the bus home from school. I would pick him up but he and Julianna have the same dismissal time. They get out of school at 3:30. Jack's bus did not arrive at our house until after 5 pm. I also saw they they did not seem to have a proper car seat for Jack. They have the integrated restraint system which is like a built in booster seat. It has a 5 point restraint, but it has him just sitting on a pad on a regular bus seat. I looked it up and it does not seem to meet the NY state law for child restraint systems in buses. I an going to talk to the bus coordinator at the school today. I would prefer to drive him home because I don't think 90 minutes on a bus is good for him and I don't think it is safe. I am hoping to find some type of solution.

Jack woke up three times last night. He was screaming his head off. He would not let me cuddle him and was throwing himself down like how a child would during a tantrum. He has never done anything like this before. He did not have a temperature and did not seem like anything was hurting him. He would not relax to sleep with me. I just don't know why it happened. Finally, Smudge decided to sleep next to Jack's crib. After awhile Jack feel asleep looking at Smudge.

I do not know what upset Jack so much. . His teacher said he had a great first day and was very happy. It brings me back to the bus. Maybe because it was so long it upset him. Maybe they weren't nice to him. I just don't know. Of course the whole night terror thing could be a coincidence, but it seems unlikely.

We are going to try it all again today and see how it goes. I am hoping he has a good day and a good night.