Progress Across the Board

Jonah has been making huge progress this school year.  He has an interpreter with him two hours every morning in his kindergarten classroom and she is wonderful!  Ruth works with Jonah on signs and classwork and also interprets for his teacher.  His classroom teacher has fully embraced him and signs in class like she has been doing it for years.  Jonah eats lunch in a resource room where the ratio of students to staff is much smaller; we felt this was better for him as he adjusted to being at school all day.  He spends the better part of the afternoon in the resource room working one on one with a teacher or having some down time.  He then makes it back to his regular classroom for the last 30 minutes or so. 

Jonah has a massive sign vocabulary and it grows constantly.  Ruth has said multiple times that Jonah has surpassed every student she has worked with in sign.  What an amazing feat for a 5 year old boy!  In class Jonah sometimes identifies words and numbers before his classmates can.  The majority of signs that Jonah knows, he can also spell and read through sight word recognition.

 His classmates are great!  They are incredibly helpful and willing to sign with Jonah.  If we make it to his classroom early, Jonah is usually surrounded by a group of girls!  He is a ladies man:)

On January 14 Jonah saw Dr. Escobar (developmental pediatrician/neurodevelopment). Dr. Escobar was floored with Jonah's progress over the years and said that he hardly recognized him. He is really only seeing Jonah now to control his medication (adderall for focus/attention and baclofen for muscles).  Praise God!

And the Mapping Continues. . .

On January 14, 2013 Jonah went to the audiologist again to have his cochlear implant map adjusted.  It is quite a process finding the correct place for the cochlear implant to be programmed.  If it is too high, facial nerves can be stimulated which is a problem.  Obviously, if they are too low, opportunity for sound is lessened.  When we left that day, we were told to begin conditioning Jonah with listening for a command before completing a task.  For example, he was not to put the marble in the cup until he heard me tell him to.  We also began the difficult task of encouraging Jonah to watch and listen to sounds and also try to imitate them.

On January 28, 2013 Jonah visited the audiologist yet again!  Minimal changes were made and the audiologist feels that we are close to a complete map for his implants.  He was put in the sound booth with a student audiologist.  The audiologist then gave Jonah commands to stack the blocks.  He had to listen and put the block on when told.  Normal hearing is around 20 (not sure what measurement this is).  Jonah tested at 25 in his left ear and 30 in his right ear.  Lindsay (the audiologist he normally sees) felt really good with the results and felt that we would see more in the months to come.  We will continue on the same therapy path that we were given at the Jan. 14 visit. 

Cochlear Implant Activation

On January 2, 2013 Jonah's cochlear implants were activated.  We first met with the audiologist and she helped us begin to sort through the FOUR boxes of accessories and parts for his devices.  After that, she began the initial mapping (basically it is programming the device specifically for Jonah).  Grandparents were then squeezed into the tiny room and the initial activation took place.  Jonah did begin crying when they were first turned on.  Our best guess is that he was scared and overwhelmed.  He gradually adjusted as the cochlear was turned down to a more comfortable level.  He reacted to the sound on his iPad by turning it down after I turned it up and he also started different times when he coughed. 

Recovery Period

The first two days home were pretty rough with Jonah.  He couldn't seem to get comfortable anywhere in the house.  Jarrett and I followed him around nonstop once he was stable enough to walk around on his own for fear of him falling and hitting his head.  His face seemed to take the brunt of the swelling and he was almost football shaped for a few days.  Jonah spent the rest of that week at home.  The following week he was able to go back to school, but he was still pretty tired and wore out.  We made the decision to only send him half days for a week to give him some extra time to heal.  His mornings at school are spent in his kindergarten class with a sign language interpreter so we felt comfortable with him being in their care. 

Cochlear Implant Surgery

 Jonah's class made him a shirt to wear to surgery with their handprints on it.  So sweet!

On November 26, 2012 Jonah went in at St. Vincent Hospital for his cochlear implant surgery.  He was taken to the OR around 10:15.  He was quite the big boy; a nurse came for him and he walked with her after giving a high five to all of us (Jarrett, both sets of grandparents, and myself).  We were updated around 2:30 or so with the news that the first ear caused a little trouble because the cochlea was smaller than it looked on the CT.  Dr. Miyamoto had to work just a little harder than he expected.  Around 5:00 we met with Dr. Miyamoto who said that everything went well and he was able to 15 of 16 electrodes in one ear and 16 of 16 in the other.  He was incredibly pleased because some patients only get 9 or 10.  In the OR the audiologist had good results on the initial tests of the implants so everyone was pretty optimistic.  We were able to see Jonah in recovery, though he was pretty groggy still.  After a bunch of prodding, we were able to get him released enough to go to his room.  We spent the better part of the night trying to keep Jonah comfortable and calm.  He was pretty agitated during various times.  Around 11:00 the next day, we were released to head home.

Hearing Aids

In March Jonah had a sedated ABR that told us for sure that Jonah has profound hearing loss in both ears. We were able to schedule an appointment with an Ear, Nose, and Throat doctor at St. Vincent to discuss our options for cochlear implants. We were encouraged to see an audiologist outside of St. Vincent to get the hearing aid process started quicker. For insurance purposes, we had to try hearing aids first and prove that they didn't work before going to cochlear implants. On May 11, 2012 Jonah began a three month trial of hearing aids. We saw an audiologist at the Speech and Language Clinic at Ball State who was willing to take on Jonah's case and work with St. Vincent.

Indianapolis Indians game May 11, 2012 with Papaw, Troy, and Nicklaus





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