Update on Freedom processors and upgrading

I finally got a chance to call SunMed and I found out a few things. They are no longer handling the upgrades for Cochlear, unless you have Aetna insurance. Cochlear is now handling upgrades and working with insurance companies. I then asked about Aetna and was told that Aetna will NOT cover upgrades. They will only cover processors if they are NOT working. I am SO glad that I got the N6 upgrade for Elijah the summer before we changed to Aetna (my insurance runs from Sept. 1st to Aug. 31st, not the traditional year) from Blue Cross Blue Shield. I just hate that he has FOUR Freedom processors sitting in a box and not being used for a trade in for an upgrade. I'll just have to be sure to keep Elijah's N6 processors under warranty. The current warranty is good through the beginning of June 2017.

Freedom Obsolescence Process

The Freedom Processor by Cochlear Corp. is in the obsolescence process. I received an email from them explaining the process.

Jan 30, 2016 Dear Cochlear Family Member, Our promise of “Hear now. And always” means we strive to bring you improved sound processor technologies and services designed to help you hear moments that matter most to you.  Did you know the Cochlear™ Nucleus® Freedom® Sound Processor has been in the market for nearly eleven years?  This means that the sound processor is reaching its end of life; hence, we begin the obsolescence process. Our records indicate that you may currently use a Freedom Sound Processor. Please make note of the following milestones:  End of Sale – Effective immediately, the sound processor and associated service plans (extended warranties) are no longer available for purchase.  Aftermarket components and accessories such as coil/cables will remain available for purchase contingent upon supply levels until December 31, 2016. Warranties for new products purchased will end on December 31, 2016. Trade-In – Through June 30, 2016, Cochlear will give a $2,000 trade-in allowance for the Freedom Sound Processor when upgrading to the Nucleus 6 Sound Processor and using the self-pay option. Repair Services – Cochlear will continue to repair the sound processor through December 31, 2016. All repair warranties will end on December 31, 2016. End of Life – The sound processor is no longer supported after December 31, 2016. This means that if your Freedom Sound Processor stops working, Cochlear cannot repair it. Or if you lose a part or accessory, Cochlear cannot replace it.   Elijah currently has two Nucleus 6 Processors that are about 18 months old. He also has four Freedom processors that are not being used. I am going to call SunMed tomorrow and see if he can get two new Nucleus 6 processors since the Freedom processors are going obsolete. I figure it is worth a shot. He upgraded to the Freedom processors back in 2006 and then his body worn processors went obsolete about 2 years later and we were able to trade those in for two new Freedom processors. We shall see what happens.

Life is Funny

Body Worn Processor

I met a friend of mine at a Mexican restaurant to celebrate our graduation from college and earning our Master's Degrees in Special Education. Elijah went along with me because I didn't want to leave him at home alone. My friend and I talked and we all ate a great meal. Elijah was busy playing games on his iPhone and really didn't pay us much attention!

My friend and I were talking about the certification test she still needs to take and our future plans in education. One of the managers of the restaurant came over and asked us how our meal was. My friend spoke to him about another manager that works there. She said he husband went to college with the other manager and they spoke for a few minutes. This manager then said, "The reason I came over is my son is deaf and he just got his cochlear implants." I asked him how old his son was and his son is 12 months old. I told him a bit about Elijah and how he was turned on with his first implant at 18 months of age and how he got his second one at the age of 4 1/2 years. He asked me how Elijah was doing and I proceeded to ask Elijah some questions. Elijah answered them all without even looking up from his iPhone. The manager then showed my friend and me a video of his son being activated. It was exciting to see how the boy reacted to hearing for the first time. The gentleman stayed and talked to us for several more minutes and I encouraged him to make sure he took his son to auditory verbal therapy and to TALK all the time to him. His son has the Nucleus 6 processor like Elijah wears now. I told him about Elijah's first processor which was a body worn processor. He was surprised to hear they used to be so big!

Nucleus 6 Processor

I also told him that I had continued to sign with Elijah when he was first turned on, and that sign slowly faded as Elijah learned to talk!

It was a very interesting conversation. The man was very encouraged and thanked me for my time I have not had this happen in a very long time. When Elijah was younger I was approached by parents of deaf children and adults with hearing loss all the time it seemed. I am not sure if it is becoming more common to see CI processors on people or if I just don't have Elijah with me as much as I did when he was younger. It was nice to hear this man's story and see how excited he was about his son's journey with hearing. I am happy that Elijah and I could be a part of that.

Results!

The doctor called with the results of Elijah's genetic testing. It seems that he does metabolize some of his meds differently than others. This means he needs a high dosage of these medicines, which he is already on. The doctor said that it explains why he needs these larger doses that other people don't need. She doesn't want to change any of his medications at this point, but we had already changed one of his ADHD medications by increasing it. We go back on Feb. 2nd to discuss how he is doing. I am not sure if she will want to make changes then or not. Overall, I am glad we did the testing. It helps explain why he needs these larger dosages of medicines. Hopefully we can continue to use this information to assist with future decisions.

Genetic Testing

I took Elijah into his doctor today for genetic testing. The nurse swabbed both of his cheeks and will send the samples off to the company to have it tested. The testing will show which medications Elijah's body metabolizes better so that the doctor can decide which medications to try with him. It will cost around $300 and I think it is worth a try. Right now he is maxed on some of his medications and the doctor wanted to try a new ADHD medication for his impulsivity, but what to try? It is a guessing game. She did up his intuniv medication by 1 MG and we will see if that helps. We should have the results next week and they will call me to discuss them. Another parent had mentioned genetic testing at the Tourette Syndrome Support Group meeting back on December 12th and said that the results had really helped with medication decisions. I am hoping this helps the doctor to made future decisions about Elijah's medication.  Elijah takes medication for OCD, ADHD and for his tics, and it is always hard to know what is helping him and what isn't. I'll keep you all posted!

Rechargeable vs. Disposable Batteries

Disposable batteries

Elijah has been using rechargeable batteries since he was upgraded to his Nucleus 6 processors. He had rechargeable batteries with his Freedoms, but his FM system had a separate battery rack so we didn't use the rechargeable batteries much until he started using the MyLink FM system. He has had the Nucleus 6 processors for 18 months now and one of his rechargeable batteries is starting to not hold a battery all day. I started doing some research on disposable batteries and found that I can get a box of 60 batteries for $18.25. After doing the math, I would need about 600 batteries, or 10 boxes for one year. That is $182.50. The cost of one rechargeable battery is $199. The only reason to go with the rechargeable battery is for swimming with the Aqua+ kit.

rechargeable battery

I still have some disposable batteries that we can use until I decide what I want to do. One advantage of the rechargeable batteries is they do last all day and we just switch them out at night (he has four batteries for two processors, so one set charges while he wears the other two). The disposable batteries will last for 2-3 days, but can die at any time and then you have to stop and change them. Elijah doesn't like it when his batteries die, so I would have to have a chat with his case manager so she understands that he may not react well if they die at school. He knows how to change the batteries, so that is good. The disadvantage of the rechargeable batteries is they only last about a year, so if we switch them out every other day then they should last 2 years, but you never know. For me to buy four new rechargeable batteries would cost $800 for 2 years. The disposable batteries would cost about $360 for 2 years. I could try to get insurance to cover the batteries, but that is a hassle that I am not sure I want to deal with right now.

I am curious to find out what others prefer! Please leave a comment.

Nucleus 6 with disposable batteries

Our Christmas Break

Elijah and I are off for two weeks for Christmas break and Jacob will be home for a whole month. My hone still has to work, but has the next three days off! We have actually gotten to sleep in a few mornings and we are enjoying the nice weather.

I completed my Master's Degree in Special Education from Texas Tech University this month. I am not a certified Educational Diagnostician. I am still waiting for my diploma to arrive in the mail! I can't wait to get it. I was able to print my certification out on the TEA website, and that definitely made it feel more real. I can't believe I have my master's degree! Jacob has only one more semester left in school and he will graduate with his associate's degree in May of next year!

Elijah is doing well. We went to see his doctor for his Tourette Syndrome, OCD and ADHD. She got to see a lot of his impulsivity at this visit. He was persistent at trying to get his way when she tried to talk to him. We are changing his medication a bit, and will go back in about six weeks. She mentioned a genetic test that might help pinpoint which medications would work best for him. The interesting thing, is this was mentioned at the Tourette Support Group meeting we attended back on Dec. 12th. I called the genetic company, and our insurance is not on their list yet, but I was assured the out of cost for me would not exceed an amount that I am willing to pay. I am going to take him next week for a cheek swab and then see what we can find out. The family at the support group meeting said that when they had the testing done, they learned a lot about the medications that would help their son and it has been very helpful. The doctor wants to possibly change his ADHD medication, but it is hard to know what to change him too, but hopefully this testing will help. I am excited about it, but don't want to get too excited

We are very excited about Christmas. Elijah got a new bed, which my hone, Jacob and I put together yesterday. Elijah helped some, but it was a small room and we needed all the room we could get to put the bed together. He did run some things back and forth for us and keep an eye on our progress. He was so excited to get his bed. Jacob's big gift is the car he is now driving. I have a few surprises for both boys. All of my other shopping is pretty much done. I have a few more things to pack. My honey and I want to go shopping and look at some jewelry. We just aren't sure if we want to fight the crowds tomorrow.

We have also been busy baking. I have been making snow ball cookies and will be making pralines later this week. We have also been making truffles! Jacob and Elijah love to help make truffles.

TRUFFLES

 My honey and I roll out the truffles and then put them in the sprinkles. The boys are in charge of making sure the truffles are covered in sprinkles.  They then put them in the mini muffin cups. Every 10th truffles requires a taste test for quality control and we each take our turn testing the truffles. We let them know what time we will be making truffles and the boys make sure they are there, or they know they miss out. We have fun as we make the truffles and it is a nice time to talk! We have made several batches of truffles.



Jacob and Elijah making truffles.

Today my nephew and niece came over and we made Christmas cookies. This is something else I enjoy doing this time of year. We had a lot of fun and the kids got to cut out cookies, bake them, and then decorate them. We use sprinkles on the cookies as well! My honey also has some Christmas favorites she likes to bake. We have been baking for several months. Elijah takes treats to all of his teachers and I hand treats out to my staff.


I am looking forward to 2016. I can't believe how much has happened this past year!! I hope you all have a very Merry Christmas!