Thursday, December 29, 2005

Jack is "Darth Vader" for Christmas

Christmas was great!! Jack and Maddie got a lot of great presents from everyone. Jack got a lot of Star Wars stuff. His favorite was a Darth Vader Mask with a cape and light saber. Before Christmas he would ask me to tie his blanket around his shoulders and would then walk around the house making the Darth Vader breathing noises. Now he has buttons on the mask that makes breathing noises and also says sayings from the movie like "you don't know the power of the dark side". On our way to my sister-in-laws house on Christmas Jack was in the backseat with the mask and pushing the buttons over and over again. My daughter got mad and told Jack to stop pushing the buttons. I told her that on Christmas she should not get annoyed, but to be happy that Jack even wanted to push the buttons because if he didn't hear he would not have any use for the buttons because he could not hear them. I'm not sure she understood what I was trying to say because she was still upset with him and she is only six. It made me think though that we are lucky to be living in a time that allows my son to hear!!

Today I took some pictures of Jack in his mask......what a ham!!!

Friday, December 23, 2005

Bi-lateral Denial

We just got the letter today, Jack was denied for his bilateral surgery. Nice Christmas Present?! We have Blue Cross and Blue Shield of Illinois. Many people with BCBS are having problems with getting bilaterals approved. It just boggles my mind, especially when medicare and medicade are now covering them and several other insurance companies are also. We have contacted an Attorney who will be appealing on our behalf. He has been very successful in getting bilateral approved after the first appeal. Keep your fingers crossed for us!!! We will keep you all informed as we move forward in this process.

Have a Merry Christmas!!!

Friday, December 16, 2005

Jack is really making progress!!!

Hello. Jack had AVT today and did great. Jack is really picking up new words and understanding the meaning a lot faster than he ever has. The new words we have been working on the last 2 weeks (Christmas theme) he is understanding all of's amazing!!! Lynn our AV Therapist told me that she is so excited for this next year because Jack is just going to take off. I really know this for a fact to, I can see it in his eyes things are really clicking lately.

A cute story: I took the kids to get their hair cut last night and they give out suckers to the kids. Jack wanted a sucker and I told him he had to ask for one. He said, "sucker please" and also said "thank you" to the woman after she gave him one. He does not lick suckers, he bites them and they last about a whole 2 seconds. After the first sucker he said to me "one more". I told him he had to go ask the lady for another. He went up to the counter and she did not see him. He looked at me like what should I do. I told him to ask her for another sucker. So he started pounding on the counter and shouts "hey you". He has never said "hey you" be for in his life. I thought boy this kid is picking up random things without being taught. What was even better is the women understood everything he had said and even said how cute he was!!! Well this made my night. My son is finally communicating with strangers and getting his point across!!!

Today on our way back from taking my daughter to school I heard Jack in the back of the car saying "high five". He repeated this a couple of times and I thought what is he saying high five to....the building? I looked back at him and he said, "look" and pointed to a crossing sign. The kind that tell you when it is ok to cross the street or when to stop. Well the signal was a red hand and he was trying to give it a high five!? The thoughts of a three year old.....ya gotta love it.

Saturday, December 10, 2005

Bi-lateral approved after news cast in N.Y.

Hello, I thought I would share this information with all who are visiting Jack's blog. Exciting news for a little boy in New York. His insurance company denied his bi-lateral implant, but when the news stepped in their denial was turned into an approval!!! Congratulations to them. We still have not received a decision from our insurance company yet, we have Blue Cross Blue Shield of Illinois. I have heard they are one of the hardest companies to get an approval from. I don't understand this at all! There is so much research out there to support the benefit of going bi-lateral. I guess it's all a money thing. They are trying to get out of paying for as long as they can, but they won't be able to keep denying much longer. With so many families choosing this for their children, insurance companies will be forced to pay attention to the improvements these kids are making. They will be forced to pay!!! It is our job as parents of this generation to fight for the next generation of implant candidates. Please see link below for transcripts from news segment on the boy in New York.

Friday, December 09, 2005

Jack - Mr. January in Advanced Bionics 2006 Calendar

Yes, here I am again. Proud Mom. Jack made the 2006 Advanced Bionics Calendar. You can all find "Jack Robbins" in January. I know you all will be able to order soon. I was told 2 weeks?!


Hello All,
I'm really looking forward to Christmas this year. Jack remembers so much from last year, it's amazing. We went by a gas station two weeks ago and he saw an inflatable Santa. He pointed and said to me "look, ho, ho, ho". I had not spoke of Santa since last year! I was blown away. Jack is really into Star Wars right now and I'm sure this will make for a complete Star Wars Christmas. My sister-in-law found a Darth Vader Mr. Potato Head?! Sounds cute....I know he will love it. My daughter Maddie who is 6 is on pins and needles. She has been such a great teacher to Jack. It has been so nice to watch them play today. They have been getting along so well (knock on wood). Jack as usual is copying her and repeating everything she says. He has been such a parrot lately. She will be talking to me and he will be standing next to her and trying to repeat her sentence. It's adorable!!! I am so fortunate to have my kids....they are such a least today!!!!

Tuesday, December 06, 2005

Jack's Story

Jack was born on February 27, 2002. We were so excited to have a healthy little boy. We never expected in a million years that he would fail his newborn hearing screen. We were told not to worry, that it was probably fluid in his ears and to have him retested at his 6 week check-up. We didn't worry at all. We had no family history of deafness and our daughter at the time was 2 and very much hearing. We assumed all would be fine.....boy were we wrong.

At 6 weeks he failed again. The Audiologist didn't give us results, but her face said it all. She told us that the test was inconclusive and referred us to a ENT to discuss the results. We saw the ENT the following day and he confirmed our greatest fear. Our son was Deaf!!! I still have a problem saying those words to this day. He told us our son was so deaf that he could not even hear a lawn mower if he was standing next to it. This doctor was very abrupt and "matter of fact" and to this day I hate him for the manner in which he told us. The one positive thing I can say about him is that he referred us to a wonderful doctor named Nancy Young at Children's Memorial Hospital in Chicago. We made an appointment and got in to see her the following week.

Dr. Young explained what hearing loss was and the type that Jack had. She requested to rerun all of Jack's tests herself and to have another ABR done. She also put a request in for loaner hearing aids for Jack to try. Jack's ABR results showed him to be severe to profoundly deaf. Dr. Young had Jack fitted with hearing aids that week.

Jack received his hearing aids at 3 1/2 months. It was so hard to see my baby with hearing aids on. It really hit home when he was fitted, I wanted to cry the whole visit and was shaking like a leaf when I had to put the ear molds in his little ears for the first time. His ears were so small and the hearing aids were so big. Of course, we all know the feedback issues for a child with hearing aids. We got feedback constantly. I can remember driving and they would be squealing and I could not do anything about it but turn up the stereo. Luckily, my daughter soon learned to help out her baby brother and push them back in.

The next step was deciding what type of teaching methods we wanted to use. With so many choices we decided to go with Auditory Verbal Therapy (AVT). I have to say choosing this type of therapy was one of the easiest choices we have made in our lives! AVT seemed so natural and the outcomes of these children are enormous. We wanted our son to be fully mainstreamed and be able to communicate with family and friends and to lead a "normal" life.

Jack started seeing Lynn Wood, a wonderful Auditory Verbal Therapist at 4 months old. She has been my rock through our journey and I don't know where we would be without her. With AVT the main task is to narrate everything. Explain everything you are doing in your day, what he is playing with, what he is eating, doing crafts, reading books, singing songs, etc. Everything I would have done with my daughter I did with Jack, but with more narration. We talked, and talked, and talked some more. To this day we are still talking.....nonstop.

Jack, we believe had a fluctuating loss which made it hard to tell how much he was getting from his hearing aids. One day he would turn to his name, the next day I would have to touch him to get his attention. This time was very frustrating for us and without experience in raising a child with hearing loss we didn't know what to expect. We later learned this was not normal and that he should be turning to his name without our tapping or visual cues.

At 19 months we decided to have Jack screened for a Cochlear Implant (CI). Believe me, this was not a choice I wanted to make. Thinking of putting my son through surgery scared me to death!!! We were told after his first screening with the CI Audiologist, he was indeed a candidate. We soon had an appointment to see Dr. Young again. She discussed the surgery and eased our minds on what the surgery entailed and what a benefit a CI would be for Jack. We received insurance approval within 4 weeks and soon had our surgery date.

Jack was implanted on January 17, 2004. We choose Advanced Bionics due to the fact that Jack was still taking off his hearing aids and throwing them. We figured the microphone on his head and not on his ear would be the best choice. Another reason was they had just approved the HiResolution programming and we wanted the latest and the greatest for our son. Surgery went off without a hitch and Jack handled everything well. He was upset by the head dressing and the bands to keep his arms straight with the IV, but other than that he was fine. We went home that same day.

The next day Jack did well. He was a little groggy, but other than that he was back to his normal "play hard" self. His incision didn't look as bad as I expected and it healed very quickly. I have to tell you I was worried about the way his ear looked. It looked like the doctor had sewn it on wrong because it was sticking out like "yoda". I quickly called Dr. Young's nurse and was told it was normal and when the swelling went down his ear would look normal again. Guess did!!!

On February 17th the day was finally here, ACTIVATION DAY!!! We were so excited and were hoping to see a big reaction at turn on, we didn't. Of course we were told not to expect much, but of course we hoped for more. I have to say we went home knowing he was hearing because Advanced Bionics has software that lets you know if the auditory nerve is being stimulated, and it showed his was. That day Jack still seemed really unimpressed by his new sense of hearing. Later in the evening my husband called Jack's name with his back turned and Jack turned to him. We were told not to expect this for a few weeks, but he did it several times that evening. We knew then and there this was the start of a new life for our son and that we had made the right decision.

After activation Jack really started to make progress in AVT. Finally, he was repeating ling sounds after 3 months of activation (he never did any of them only Ahh with hearing aids). I remember my sister and I were having a garage sale and a man was walking a dog past her house and Jack pointed at the dog and said "oof, oof". It was only 4 months post activation and he was finally communicating. Jack soon started saying animal sounds and simple words like up, hot, hi, and bye.

Jack has now been implanted for almost 2 years now. He is saying about 170 words and is starting to repeat everything. His voice quality is beautiful and does not have a "deaf" sounding voice. He really has made a lot of progress since last year. Sometimes it feels slow, but just when we start to get down he makes a big jump. He really has a stubborn streak that really hinders him from making the progress that he could. He has a lot of receptive language, but is still not age appropriate in expressive. We are still in AVT and attend twice a week. Jack will be starting pre-school this January and we are nervously awaiting that. We are excited for the future and know Jack is going to be very successful. He has such a fun personality and a love for life. With the great team we have behind us we know Jack will do well and the sky's the limit for what ever Jack wants for himself. Jack is a joy in all of our lives and has taught us more than we could ever teach him.

We are now in the process of getting insurance approval for a bi-lateral implant. We are expecting a denial, but are going to put up a fight!! Studies are proving that two implants are indeed better than one, especially in noise. With Jack still being so young we are sure Jack will get full benefit from a second imlant. For more information on Bi-lateral implants please click link found below.

P.S. Jack has been watching Polar Express. At the beginning of the movie the conductor says, "all aboard". I heard Jack say to himself "all aboard". He then came and got me and pointed to the T.V. and said "all aboard" very excitedly. At moments like this it reminds me of how lucky we are to be living in a time that allows my son to hear! We are very blessed.

Family Photos