Moving Along and Rolling Over!!

We are moving along and getting some dates set. Jack will have his surgery for bilateral cochlear implants on 11/20, pending insurance approval. They are changing a lot of the protocols and they said he might not even have to stay overnight. He is likely to be the first case since they go in age order with the youngest being first. They do this because of the fact that they can't eat prior to the anesthesia and the babies have the hardest time with that. I am happy we are moving along with it. If all goes well he should be hearing before Christmas.

Jack will get his helmet on Wednesday the 23rd. We went for the fitting last Friday. They put a socklike material shaped like a hat on his head. That material had sensors all over it. Then they used a type of gun that read all the sensors. All that data went to a computer and it made a 3-D model of his head. They will use that to make his helmet. I got to pick from a bunch of different patterns but I decided on basic blue.

Jack rolled over!! He finally did it! He went from front to back in therapy but without being touched. He has since done it a few times at home. I am very proud of him and relieved. He is seeing a Developmental Neurologist on Wednesday so I can get a better idea where he stands with everything, but I am thrilled that he finally rolled over.

Jack's hearing aids are not doing anything for him. I have not been putting them on him much because I am concerned that he will choke on them or swallow the battery. Button batteries are a huge big deal if a baby swallows them. If that should happen they usually require surgery to get them out and and caustic if they are left in. If he is not getting any benefit from the hearing aids I prefer not to chance any issues. I do sometimes put them in when he will be right in my field of vision, but never in the car and I am leery about it for daycare.

Jack is a very verbal baby. People always ask me why he coos and yells so much if he is deaf. I am told this will stop if he is not implanted. That is one of the reasons why it is important to get the cochlear implants so early. All the cooing and repetitive noises babies make are the building blocks to language. He needs to do this in order to learn to speak later. If I sit him on my lap and make certain noises he is able to copy them. When this first started happening I was sure they had made a mistake and he was not actually deaf. The teachers from the deaf school and the evaluators all told me that deaf babies do this. He sees how I am moving my mouth and copies that. They said that is one of the reasons they do universal newborn hearing screens now, because deaf babies fool us. They said that, before the screening, they would not know the babies were deaf until they failed to develop language at 3 or 4 years old. That is really late to find out that a baby is deaf. If you want the child to speak you need to find out early and start therapy right away.

Jack has physical therapy twice a week, speech therapy once a week and cranio-sacral therapy once a week. NYU told me they want him to have auditory therapy four times a week and the deaf infant program wants him to attend twice a week for 2 1/2 hours each time. I am having difficulty getting all these things done, getting to all the doctors appointments, getting to work and doing everything for Julianna. Our house is still under construction post hurricane Sandy. It is getting closer to completion. I am hoping it is finished soon. When it is I would like to hire a full time, driving nanny to take Jack to a lot of his appointments as well as get Julianna on and off the kindergarten bus. Right now I am getting by with luck, prayers and the help of great friends.

I went to get my hernia checked again and it is looking like I will need the surgery very soon. I am hoping I can coordinate it with Jack's surgery and we can recuperate at the same time. I hope it works!

We are busy but we are enjoying fall. We have gone to the pumpkin farm and apple picking. I took Julianna to the Halloween events at Sesame Place and she had a ball. She is still in ice skating, dancing, violin and arts and crafts.

I just passed the 4 year anniversary since my cancer surgery. I have only one more year that is considered pretty risky. We are super happy and life is good!!

Kindergarten, No Hearing Aids Yet, Pictures

Julianna started kindergarten on Tuesday!! It was a big day for both of us. She was excited and I was nervous and sad that she is growing up so quickly. My little 3 pound baby is with all the big kids now. She did say some of the kids said she looked like she was three and that made her sad. I told her to please remember that Uncle Rich was made fun of for being small and now he is the tallest person she knows. Kids can be mean. I hope she learns to let it all roll off.

Jack was supposed to get his hearing aids yesterday. I took the day off for the appointment. About two hours before the appointment they called me to say the hearing aids weren't in and I needed to reschedule the appointment. The lady there (LIJ) was pretty nasty as usual. After speaking to the supervisor I was able to get an evening appointment for next Wednesday. I hope it works out this time.

Here are some pictures:

Julianna ready for the first day of kindergarten.

Julianna getting on the bus. I followed in the car.

Jack at 9 months old. Super happy.

                                    View from our dock in PA. We are sorry to see summer end.

NYU Moved Up

NYU called me and moved our appointment with their cochlear implant surgeon from 7/29 to 7/1. I am thrilled!! The doctor is J. Thomas Roland. I can't read much about hearing impairment without his name coming up. The have the premier cochlear implant center on the east coast.

The FDA requires infants to be 12 months old before getting a cochlear implant, unless their deafness is caused by meningitis and then it is 6 months. Meningitis causes the cochlear to harden so time is of the essence to those babies. NYU frequently gets FDA waivers in order to implant babies earlier. I am hoping they will be able to do that for Jack since earlier is best for language acquisition.

I really don't even know if Jack will be a candidate for this surgery. He will have to have an MRI and possibly more testing before we even know if he can get them. I am also hoping they can implant him bilaterally in one surgery, which is relatively new. There is also a possibility my insurance won't even cover them. I called my insurance since there was no one listed on the plan as a cochlear implant surgeon. They told me to go to the appointment and have the surgeon's office call them and they would work something out.  I had a similar situation with my breast reconstruction and they ended up paying for it. A lot of parents have had big fights with their insurance companies because they were considering cochlear implants to be cosmetic. In the end most of them won and their kids had the surgery.

I am reading more and more about this surgery and deafness in general. They usually like to get hearing aids on the babies as soon as possible. They were not able to do the molds for Jack because of the fluid in his ears and they wouldn't do the surgery for the tubes before he was six months old. The hearing aids are not covered by medical insurance, but Early Intervention will pay for them. After Jack's surgery the audiologist told me it would be about six weeks because all the paperwork had to go through. I think that is a really long time and I know Jack finished all the Early Intervention evaluations and I did fill out tons of paper work. I have a meeting with Early Intervention and all the evaluators on Tuesday. Julianna has her kindergarten  screening on Tuesday morning so I made the Early Intervention on the same day in order to cut down on taking days off.

Jack is not likely to hear anything with the hearing aids. They still give them to profoundly deaf babies because it will keep his sensory pathways open. That will help to keep his auditory nerve stimulated and that should help him when he gets his cochlear implants. They are saying that in the best case scenario he might be able to hear a siren with the help of the hearing aids.

Here is an interesting video presentation about cochlear implants. It is done by Dr. J. Thomas Roland who is the doctor I am taking Jack to.
http://www.veomed.com/va021470552012

It is a little long, but very informative.