Happy Thanksgiving

We have so much to be thankful for this year. Jack is doing well in school and we had very positive comments at his parent-teacher conference. Jack's understanding is increasing so much he loves numbers and counting! Jack is still behind in his expressive communication, but with the amount he has in understanding it is only a matter of time when it will all come pouring out! Jack has a very "head strong" personallity which has never been to his advantange....hopefully it will be in the future! Here is a picture of Jack at school. Jack attends a montessori pre-school. I would highly recommend this type of schooling for any child.

CI- Circle

I wanted to tell everyone about a great online support group for parents of children with cochlear implants. I have been a member for two years have gotten so much great advice from other parents that are going throught the same things that we are. I actually enjoy talking to other familys and giving my advice also. If you are a parent of a newly diagnosed child and would like to talk or get information please sign up for this yahoo group. You can register at yahoo groups - ci circle.

Jack and his "New" ear

Update: Jack is now loving his "new" ear. He wears it alone and is understanding with it. He still likes his "old" ear best and really prefers to wear both, but he is able to tolerate his new ear alone and is pretty proud of himself. It's about time! Jack has not been too keen on working with his new ear alone until just this month and now we know that he has caught up with out strictly working with his new ear alone. Which is good news for all of you parents with headstrong kids who are unable to get there kids to tolerate working on the new ear!!! Now that he will tolerate his new ear we have been able to test how well he understands and can repeat what he is hearing.....and he really is close to being where his old ear is. He questions somethings, but very little, and he is very quick to repeat and respond.

I have noticed such a difference with him in noise. My husband races cars and we were at the racetrack last weekend and Jack was hearing as well and my hearing daughter. I and everyone around us were so impressed. We actually had a similar situation at Great American this summer. With all of the noise of the rides and screams from the people it did not seem to effect Jack's hearing. He was hearing so well even at a distance....the miracle of two ears! I am so thankful that we have been able to give my son the gift of hearing and now that he can hear with both ears it is icing on the cake. He is doing so well and I am so proud of him.

He is also doing well at school and his teacher said that she has noticed big changes in Jack since spring. He is more attentive and is working on a lot more advanced concepts!

I would recommend bilateral implants to any parent who is thinking of them for there child. It has made listening so much easier on Jack and on Mommy.....I don't have to repeat and he can hear greater distance and in noise! He seems to process sound faster also!

Start of the School Year!

Where did the summer go......too fast! Anyway Jack has started his second year in pre-school. He is attending a mainstream montessori in our community. Jack is now attending 5 days a week for half day sessions. Last year he attending only 4 days a week. We are still in AVT and are attending twice a week for a hour session.

I was so nervous for Jack to start school this year because when we would talk about school he would just say "no" and get mad at me. I thought he would have a major meltdown, but actually he did weep a little but his teacher said he calmed down quickly and went right to work. I think now that he is bi-lateral I'm a little less concerned about his hearing this year. He is a really good listener (when he wants to listen..ha ha) and his understanding is increasing daily. He still has a way to go with him using his words, but knowing he is understanding concepts and hearing them I know they are getting in there he will talk more when he is ready!

Jack's teacher said she is shocked how much Jack has improved in the last 3 months and that he is verbalizing with her more and repeating. Jack is a very smart kid and I know he will do well. So on to another successful year! I will update on Jack and school throughout the year.

His teacher took some pictures of Jack's first day and attached that picture. I knew Jack's hair needed to be trimmed, but seeing these pictures made me get him in for a haircut that night....so excuse the hair!

P.S. Jack is also tolerating his "new" ear alone. We see his audiologist in two weeks and I will let you all know how that goes.

Update of Jack's Bi-lateral Progress

Hello. It has been a while since my last posting, but I have had nothing to really add regarding Jack's progress and we have also been very busy. Jack's progress with his bi-lateral has been slow. He is defiantly hearing out of it, but has been fighting us "tooth and nail" regarding working with his "new" ear alone. He had an audiology appointment last Monday and we just tested his "old" ear because he was getting upset about taking his "old" ear off and testing his "new" ear.

I have discussed this situation with Jack's AVT and audiologist and they have both said not to push it and let Jack take the lead. He is wearing his new implant religiously all day, every day, so I know his nerve is being stimulated it is just obviously going to take Jack a little longer to get his "new" ear caught up. Oh well......what can I do? I don't want him to not wear it and I know he does like the "new" ear just not alone!

NOTE: Today he got a Pirates of the Caribbean rag to wear on his head from McDonald's and it was fitting small because of his two BTE implants. He asked me to help him put it back on and his "old" ear fell off as I was trying to tighten it. I think because he was only thinking about the rag and not his implant I started talking to him about pirates and the rag and if he needed help, ect. You know what he really is starting to understand.....Yeah!!! I asked him if he wanted help and he said yes with his "new" ear on and then I asked him if the rag was ok and he said ok. It's coming....yeah!!!!

We sure have a head-strong little pirate on our hands! LOL.....

New Family Pictures

Bi-lateral is working

Jack is now starting to understand with his bi-lateral. It has really been quite a fight to get him to even work with his new implant alone. I have been taking Jack's lead and letting him slowly work alone with his "new" ear. Today I got about 5 min with his "old" ear off and he understood and repeated the sounds I said. I used cards with an airplane, boat, and mouse. I put the cards on the table and did ahh (for airplane), puh, puh, puh (for boat), and eee (for mouse). He not only picked up the right card for the sound he repeated the sounds without hesitation! Finally were getting somewhere.....yeah!

We have only had one adjustment since his turn on date of May 23rd. He did not cooperate at his adjustment because he did not want to do any work with his "old" ear off. He is a very stubborn boy and he does not settle down easily when he was upset so his audiologist just turned everything up generally without any real information from Jack. Hopefully next adjustment things will be better and we will get more information. Otherwise, Jack is now starting to work with me and understand. Yeah!!!

Third day with two ears

Today is Jack's third day with his new ear. He has been consistently wearing both of his implants all day, but he does not like to just wear the new one alone yet. He still has some swelling and the magnet seems to fall off easier, even after I added another magnet. Good news is when the new implant falls off he does put it back on most of the time.

Yesterday we had our first AVT apt. he fell asleep in the car which didn't help his mood and then when we got there we had him work alone with just his new ear. Well he cried half of the time...he was not a happy camper. We worked on ling sounds, listening tasks, and animals, things that are very familiar. He did listen to Lynn (avt) do ling sounds and put the bingo chips in the bucket to show that he was in fact hearing all of the sounds, but he was not able to repeat them. He still seems to be confused by what he is hearing and that he is not yet able to make out words. It is a little frustrating, I was hoping for him to at least respond to his name after the first day. After Jack's first CI surgery he was able to turn to his name that same evening. His hearing loss is symmetrical, his anatomy is perfect, and he has full insertion in both ears. I know Jack is going to do well with the new one, but I was hoping for a little more than we have gotten.
Last night before bed I did go over ling sounds with him and he did repeat "e" and "a", but for the rest of them he just moaned, he seems so confused by what he is hearing, but that he repeated any ling sounds is a good sign.

This week our homework is for Jack to spend 15 to 30 min a day wearing just the new implant alone. We are going to be reading books that are familiar, play with puzzles, playdough and activities that Jack really enjoys. I hope I don't get too much of a fight I know I will get some. He sure does love his first ear and does not understand yet the importance of "training" his new ear. Hopefully by next post I will have some improvements to report.

Jack hears with two ears!

Well today was the day, Jack is officially hearing with two ears.....yeah! Jack did so well today, he was very go with the flow and took it all in stride. I was very nervous that he was not going to tolerate being without his old ear on and having them program the new one. Well he was not only programmed and it went well, but he walked out of his audiologist wearing both. He has not taken it off all day and he even has put it back on when it has fallen off. I know he is not understanding much out of that ear yet when his old ear was off at his appointment I was talking to him about a picture he was coloring and he was not responding to me. Normally he will talk with me about his picture and I was getting nothing back. Then when we put his old ear on he was talking to me again. I was told that this is normal and in a few day I will notice a difference. I think he is really going to catch up quickly his AVT is going to be pretty aggressive with his therapy and she thinks his new ear will catch up fast. I will keep you all informed of his progress as we go.

Today when we were getting ready to leave the audiologist Jack was sitting on my lap and I was talking to him and normally I have to adjust him so I am talking on his "good" side. Anyway, I realized that I didn't have to do this anymore and Jack can now hear on both sides.....it was a great feeling and it gave me a tingling feeling. I can't wait to see what tomorrow will bring!!!!

Jack is doing well in school

As I have mentioned before Jack is attending a mainstream montessori preschool in our town. Today he got his first progress report and he is doing really well, better than I thought. I was surprised by all the new things Jack is learning at school and new concepts his teacher has been working on with Jack. I'm very impressed with this school and know that this is the place Jack belongs. I will be excited to see how his bilateral will help him in school next year, I'm sure it will help a lot. Two ears are better than one! Tomorrow Jack is getting turned on I'm a excited, but a little nervous. I hope Jack tolerates it well. We will see.......
The picture of Jack I copied off Jacks schools website I thought it was pretty cute. If you would like to know more about montessori schools and what they are about you can visit www.peacefulpathwaysmontessori.com There are several pictures of Jack on the site. He's a cutie and a smarty too.

Thank You!

To all of those who have commented on this site, thank you. It is nice to get some feedback and to hear that others are getting some useful information from it, as that is what I intended. I will be posting in regards to Jack turn-on (of bi-lateral) next week. Stay tuned........

Again, thanks.

Julie

Jack's Picture on Advanced Bionics Website

Check it out, Jack's cute mug is on the Advanced Bionics Website this month (May). I'm so proud of him. He's such a cool kid and so handsome (just like his dad)!

He has healed well since is bi-lateral surgery and doing great. He had very little pain after surgery and only needed pain medication for the day after. His incision looks great and the swelling has gone down. Now we are all anxiously awaiting turn on.....April 23rd.

I will keep you all posted.

Surgeries over and Jack is doing great!!!

Hi!! Jack had surgery yesterday and is doing so well today, it's amazing. Jack was so brave the whole day, we are so proud of him. The day went really smooth from start to finish, Jack had a bit of a hard time in the recovery room (wanted his IV out), but other than that things were good. Dr. Young said that Jacks anatomy was perfect and the surgery was text book. She got full insertion of the electrodes and now we are anxiously awaiting his turn on. Dr. Young prescribed tylonol w/codeine and I have only given him one dose today and I really didn't need to then, but I thought he might sleep........yeah right! He has kept himself busy playing with his video games today and is really back to his old self. We have our follow-up appointment with Dr. Young on May 12th and his turn on date is May 23rd, we can't wait!

Getting Ready for Surgery Day

Surgery Day, it is almost here. I'm not sure if we are ready....at all. For the first surgery it was a easy decision, but it seems different to me this time. Probably because Jack is hearing now and we can communicate with him and he can understand. Going bilateral is not going to be a BIG noticeable change, it will be very subtle ( I think). It is going to be great for Jack in noise and for location of where sound is coming from and I think he will notice an improvement for sure in these areas. It is just not the same decision as going from the first to the second. Anyway, enough of my mumbling. I am looking forward to the surgery being done.

Jack's was not so good when he had his first surgery, he woke up cranky and he was trying to rip his IV out and taking his head dressing off, kicking and screaming. If it was like that at 23 months what will it be like at 4!!!!! He is a lot stronger now and his will is just as strong if not stronger. The day after his first surgery he was a little groggy, but really back to normal. One thing that will help now is Jack can hear, so I will be able to talk to him after surgery, after the first surgery he was still not able to hear me so I could not comfort him with words. Can you imagine what that must have been like for him....Scary?! I guess I'm assuming that everything will be the same as it was before......I'll let you know. Another thing is he is in school now, so I'm really debating if I should send him to school the week after surgery? I'll have to wait and see.

So as the days get closer and closer I am getting more and more nervous. Understandably. I will keep you everyone posted. Please say a little prayer for our little guy. Thank you.

JACK WAS APPROVED FOR BI-LATERAL!!!

YEAH!!! We got the letter yesterday confirming that Jack indeed is approved for his bi-lateral surgery. We have a date already set up, it will be May 2nd. We are so excited and could not come at a better time. Jack will get it right before summer and have all summer to acclimate to it before school starts in the fall.

Now that we have approval I'm dreading surgery. It has been something that I have been able to put off until now. Now that it is official it has brought everything to reality. I know Jack will do well, but I don't know if I will. Jack sailed throughout the first surgery with flying colors and we have no reason to believe this won't be the same.

Anyway, thank you to all of you with your kinds words and prayers for Jack. They worked!!!!

I thought I'd add this picture. Jack is wearing his spiderman mask with web spray, it was one of his birthday presents. He sure is a cutie pie.

Jack's CI involved in the AB Recall

I was just informed yesterday, that in fact, Jack's CI was involved in the Advanced Bionics recall.

Advanced Bionics announced two weeks ago that they were recalling all unimplanted devices that were manufactured for them by Company B. They have two companies that manufacture for them, Company A and Company B. I guess they stopped having Company B manufacture for them anymore due to moisture problems in the internal 90K device. Jack was implanted with the 90k device two years ago and Jack's implant was also manufactured by Company B for AB.

Jack Audiologist mentioned that over 100 children were implanted with the 90k device at Children's Memorial and a little over 50 were implanted with the 90k devices made by Company B for AB. Jack was one of those unlucky ones. She said his device only has a 3.5% chance that it will fail and that they have had no failures due to moisture issues from any children that have been implanted with the "B" devices. She also said that AB said that if the device had been implanted over 200 days your chance of having a moisture related failure goes down. So that means hopefully Jack will be in the clear. As of today we have not had any issues and it has been over 200 days.

On another note, we are still awaiting approval for Jack bi-lateral. Hopefully it will be soon. It sounds like it may be a month before we get a decision.

If you have any more questions regarding the Advance Bionics recall visit there website. You can find a link to it in this blog listed under "links". Have a great day!!!

Jack's 4th Birthday!

Here are some shots of Jack's 4th Birthday. Cool Cake, huh. Jack is cute dressed in his pirate patch and earring.....it was pirate themed.

Jack Hearing Tested Today

Jack had his hearing tested today. He tested within "normal" hearing limits. Normal limits of hearing is anywhere from 0 to 20db. His SAT (speech awareness threshold, when he first starts to hear) was 15db today. He has tested in the past at turning to his name at 10db, but they didn't say his name today and just used "narrow band noise". I think he is more tuned into speech then into "narrow band noise" and I'm sure he would test at 10db if they would have used speech instead. Anyway, we are very happy with the testing and he is doing well and he needed no adjustments to his program. Infact, I could barely hear some of the sounds, my daughter moving around in her chair was louder then some of the sound out of the speaker. It is truly amazing how soft 15 db is and my son can hear at that soft of a level!!!

It was pretty cute today Kerry his audiologist kept trying to trick him with the testing and would pause a long time to see if he was giving false positives. Anyway, he would just sit and look at her and shrug his shoulders and say "nothing". It was very cute!!!

We are still in the process of getting insurance approval for a second implant. We are on our third appeal with Blue Cross Blue Shield of Illinois. We are working with an attorney at the Let them Hear Foundation and they have not lost one appeal yet. I just got word yesterday they they submitted the appeal last week. Keep your fingers crossed for us, we don't want Jack's case to be their first appeal they loose. We will keep you posted on the outcome. For more infomation on appealing for yourself www.letthemhear.org

Jacks School Update

Sorry, I have not updated in a while. We have been so busy with Jack in school 4 days a week and AVT the other day and my daughter, Maddie has ballet/jazz on Saturday. We also took a well needed vacation to Colorado, it was wonderful. We got a way without the kids, it was nice, but we did miss the little buggers.

Jack is doing GREAT in school. His AVT went in this past month and observed and was very impressed with the teacher and the school. I think Montessori school is great for all kids, I wish I would have known more about it when my daughter started school. I would have sent her there for sure. She is in first grade and doing really well and feel no need to change anything now.

Anyway, Jack has made many friends and is interacting and participating in class. He is getting more and more vocal in class (I'm sure one of the main reasons is he is getting more comfortable there). The teacher has started using his FM system during circle time and has noticed a big difference in his attention. After the first day that she used it I asked her how it went and she said he was so tuned in and participating that it gave her "goose bumps". His teacher is incredible and so tuned in to him and all the kids. The class size is small, about 7 kids, and she gets a lot of one-on-one and really gets to know each child well. She is so sweet and kind and truly loves children. We lucked out!!!

Also, on February 27th Jack turned 4 years old. I can't believe how quickly he is growing, it just seems like it was just his first birthday. He had a great party.....a pirate themed party!! He is into "playmoblie" now and loves the pirate set. Anyway it was great and he got spoiled!! I will be downloading pictures from his party soon.

Gotta go....Jack got a X-Box for his birthday and is totally addicted. I think its time to pull him off.

Jack Started School

Jack started school!!! He is attending a mainstream Montessori school 4 days a week. The teacher said that he did really well for his first day. They have a Gecko and he loved watching it and he kept hearing the crickets from across the room. He played with puzzles and made homemade bubbles. The teacher is so warm, I know Jack is really going to do well with her as his teacher.

When I picked Jack up from his second day of school we got another great report. He made a couple of new friends and played the "knock-knock" game. He went behind the children and said "knock-knock" to them. He was all smiles when he got out of school. He really loves it there!!!!

I will keep you all updated on his progress.

Cat With Cochlear Implant

Wow! What will they come up with next? Check this out........
http://www.bme.jhu.edu/labs/ryugo/pdfs/kretzmer/etal/2004.pdf

Going to the Movies

Hello All,

Thought I would tell you this cute story. We took the kids to see Narnia this past week. Actually, I took the kids once and they loved it so much we went again and took Daddy. Well Jack sat glued the whole time (both times). I just happended to look over at Jack at the part where the lion comes back to life and the kids get on his back. The lion says to the kids "cover your ears this is going to be loud" and then he roars. I looked at Jack as the lion said this and Jack was covering his ears and got a pinched look on his face like he thought it was going to be loud. How cute is that!!

This really impressed me because he is obviously really hearing well at the movies. I know this is a concern for some children with implants, but I think Jack really does hear well watching TV and movies. He repeats a lot of what he hears when he watches TV too.