Hearing Aids, NYU, Dr. Citron

We finally got the hearing aids. We got them on Wednesday the 11th. He didn't seem to have any notable response to anything with them in. There is a lot to the care and testing of the hearing aids. I had a lesson on everything when we picked them up.

On Thursday and Friday last week we went to NYU. We had three appointments. Two of them were to test Jack's hearing in the booth. They put us in a sound proof booth and put a small ear phone like device in Jack's ears. Then they send sound through them to see if he responds. If they think he does they make a stuffed monkey light up and play the cymbols.

They felt he responded to certain sounds in his left ear at about 75 dB. He only responded at certain frequencies. Personally, I really didn't note him to be responding all that much.If he moved his head or turned at all they were saying he was responding. He is a pretty antsy guy so it is really hard to tell why he is moving. Hearing at 75 dB is still a pretty profound hearing loss and he still qualifies for cochlear implants, but it is a lot different than the results of the auditory brainstem response (ABR) tests that he had at LIJ.

The audiologist told me that his hearing may be a bit better than it was when he was previously tested. If that is the case, his hearing aids are programmed wrong. She said that they could be hurting his ears and they may need to be reprogrammed. So I took them off him. She asked me if I wanted Jack to have another ABR at NYU. I told her that I do. The ABR is objective and the behavioral booth is very subjective. I don't want to damage any residual hearing he may have by using hearing aids that are programmed wrong.

The next day he had the same test for his right ear. He was a little irritable and the test was coming out all over the place. His right ear has auditory neuropathy and that means he doen't process sound even if he hears it. He did not test well with that ear.

Jack was also evaluated by a speech therapist. She was listening to his babbling and counting the different types of sounds he makes. She told me his cry sounds immature and she thinks he may have some vocal cord damage. He will need to be evaluated for that. It seems like we hear bad news at all of these appointments and I find it pretty frustrating.

We go back to NYU this Thursday for two more appointments. I am going to try to take the train this time. It was pretty tough driving in there and I was forced to park in a garage costing $37. I think it might be cheaper and easier to take the train even though it will be rush hour. We will see.

On Sunday we had my Dad so Betty could go to a baby shower. He is getting pretty bad and it was hard dealing with him. Julianna was very helpful and she is pretty understanding about Pop-Pop's brain disease. It was nice to be able to give Betty a bit of a break.

I had an appointment with Dr. Marc Citron my medical oncologist. He took blood and sent me for a chest x-ray. He did an exam and said he thinks everything looks normal. He also told me that I am now in the time where I have the greatest risk of recurrence. Once this year passes my chance of recurrence will start dropping dramatically. It can be pretty stressful to think about so I try not to.

Julianna is enjoying school and her activities. She has violin, ice skating, dance and arts and crafts. I am trying to find a place for swimming lessons that is a little closer to home than our last place. Jack i s happy and is proud of his two new teeth. We are all enjoying fall and having a good time!

Early Intervention

I had my meeting with Early Intervention. Jack was evaluated when he was 3 months (adjusted) and tested at or below one month old for everything except "social" where he tested over 3 months old. He is a pretty social guy and loves to laugh and smile at everyone. He was approved for physical therapy twice a week and speech therapy once a week. At his age they do speech therapy through feeding and it is really about strengthening his mouth and facial muscles.

Early Intervention usually will come to the baby's home or daycare. I was really counting on that because I am having issues getting him everywhere and still getting to work. However, they are unable to find a physical therapist who can do that. So I am going to have to take him to physical therapy twice a week. They found a place that is close to my home but I am still going to have to bring him there. They think they will be able to get someone to come to us in the fall. I sure hope so.

We still go to our craniofacial therapist. She is also a physical therapist and is really helping Jack. We were there yesterday and Jack is really progressing. I can't imagine how he would have tested if he had not been receiving this therapy. She taught me a lot of exercises to do with Jack. His problem is that his neck and back muscles are really tight from all the weird positions he was in when he was on the ventilator. They kept him sedated so he couldn't move much and that made those muscles stiff. He also has low muscle tone in other areas. None of the therapists see any evidence of cerebral palsy and that does give me some comfort. They all do think he should catch up eventually but it will be a lot of work for him.

I do see him showing signs of improvement. He brings his hands together and he also pulls his feet together. That doesn't sound like much but going "midline" is a really good sign. He has discovered his feet but he can't grab them because his back muscles can't bend enough. One of his exercises is to roll him to try to stretch out his back. Another is to put a pillow behind his neck to stretch his neck muscles out. His neck is so tight that I really have to bend it so much just to wash him or dress him. His tight neck causes his tongue to stick out.

He has been doing a lot better with his reflux. I have stopped giving him the zantac and he really hasn't had any problems. He loves to eat and is getting to be a little fattie. They kept telling me he would have feeding issues due to his palate but he really hasn't.

Jack and Julianna are going to the doctor today. She is having a recheck because she had strep throat and he is having a well baby check. I  will see if he is on the chart for his real age yet. I think he might be. Jack is gaining and growing really fast. It took Julianna forever to get on the chart for her real age.  After 5 years she is still only in the 5th percentile for height and about the 20th for weight. She is small in stature but huge in personality.

I really am blessed with two happy kids. People always ask what I want my kids to be. My answer has always been that I want them to be happy. And they are very happy smiley kids.