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!


Decorating the Christmas Tree!

Jacob, Elijah and I spent the day decorating for Christmas! Jacob helped me get all of the boxes and the Christmas tree out of the attic. He then got the box of ornaments that we keep in his room. Grandma Linda made him this box back when he was a baby to keep all of his ornaments in. After Elijah was born, we started keeping his ornaments in there also! These are the ornaments that either my mom or another relative has given them. Some of them are the ornaments they have made over the years. Both boys like hanging their ornaments, along with the other ornaments we have collected over the years. Whenever we travel, I look for ornaments. We now have a "Blue Bell" ice cream ornament from Brenham and an ornament from the birthplace of Texas; Washington on the Brazos!

One of my favorite ornaments is one I made when I was in the Girl Scouts in 1976. It is a ceramic gingerbread woman! I painted it and it was put in a kiln (I think that is what it is called) and finished, so it has held up nicely over the years. I also have some ornaments that my mom actually made when she first got married. I have ornaments from Fredricksburg, Texas and Gulf Shores, Alabama. I have ornaments that friends have sent me. I have a group of 10 women I have corresponded with for about 18 years and we do an ornament exchange each year. I love finding these ornaments.

The three of us had a really nice time decorating the tree. It was nice to see that both boys enjoyed it and didn't consider it a burden. They enjoyed finding the ornaments they had made in school. I told both of them that when they are married and have their own families, they will get to have some of these ornaments, and that they will begin their own new memories!

Thirty Million Words

Thirty Million Words is a book I just bought about a month ago. I read a Facebook post about it and it looked interesting. It is written by cochlear implant surgeon. It is an amazing book! I have only ready the first few chapters and can't wait to read more. It is not about cochlear implants, but more about how very young children learn language. It does discuss cochlear implants and I am telling many parents about this book. These are parents of not just deaf children, but also hearing children.

I look back at all of the hard work that went in to making sure that Elijah would speak and have language. His articulation is still iffy on a few sounds, but overall he is an oral communicator with a huge vocabulary. Just yesterday, while helping his brother take out the trash he used the word PHOBIA. He freaked out when he saw a dead bug in the garage. His brother told him to get over it and just bring out the trash bag. I then hear Elijah yell, "I have a PHOBIA!!!" I later asked him what a phobia was and he said it was when a person is scared of something. He got most of the definition correct. He then told me he has a phobia of bugs. He then told me that arachnophobia is when you are scared of spiders. WOW! You would think I would stop being amazed by him, but he still amazes me on a daily basis. All of the hard work that we put in at the beginning of this journey has paid off. It has not been an easy journey, and it still isn't over yet, but we are definitely on the right path.

Thirty Million Words is being sold on Amazon and it is less than $20. Parents should be giving their children the gift of language....hearing or deaf, please talk to your kids. I learned to narrate my life when Elijah was in auditory-verbal therapy and I still do it to this day. It doesn't cost anything to talk to your kids!

Memories

Elijah

Elijah and I attended a Cochlear event today in the Dallas area. He wears the Cochlear brand cochlear implant and they sometimes have events in our area. We have not been to an even in several years as it always seemed to fall on a day when we had other plans. We were both very excited to go and it was fun.

We walked in and the first table we went to had all of the Nucleus 6 items, so we walked to it first. I heard the Cochlear employee talking and I thought, "I know that voice." We stood at the table and the woman looked over at me and said, "I know you." I said, "I know you too, Jennifer. Do you remember me and Elijah?" Her jaw dropped as she looked at us and said, "THIS IS ELIJAH". I grinned and said "YES!". She then said, "He is so tall. The last time I saw him he was such a little guy." Jennifer was the audiologist who turned Elijah's first cochlear implant on. She was also there when he got his second implant. She had not seen us in nine years! Seeing her brought back so many memories of his activation and all of the things we did to make sure that Elijah would hear!

We spoke for about 10 minutes and then more people came up and she needed to speak to them. Elijah and I visited several more tables and we got to see the wireless accessories that he can use with this cochlear implant processor. I got to ask lots of questions about which accessory might work best for him. He got his face painted and he also got some balloon animals! They served us lunch and we ate with some very nice people who also had cochlear implants. Of course, everyone thought Elijah was too cute as he ate his chocolate chip cookies and then asked for more!

I got a picture of Elijah with Jennifer later and she and I spoke again for a bit. She showed me how the scan technology works on his implant processor and how to use the remote control with it. It was pretty interesting to hear about the different settings that his processor can use to SCAN the room and change his settings for him to have optimal hearing. He got to meet other adults with implants. There were a few kids there, but most of them were younger than him.

Overall, it made for a very fun day! I got to pick up some "freebies"--Cochlear bag, microphone protectors for his processors, some magnets and some pamphlets! I hope we can go to another one if they have it near us!

Elijah and Jennifer

 

Back To School

I returned to work on August 17th for the inservice and prep for the new school year. Elijah started high school this past Monday on August 24th and I started my last semester of grad school. Elijah had a very good first week of school. There were no major issues, except for him getting on the wrong bus the first morning, but he managed to get to the right school. I managed not to panic when Jacob told me he got on the wrong bus....I am still not sure what happened, but lets just say it ended well and that is all that matter. The bus route did change after the second day, because he was being picked up late and dropped at home around 5:20. Now he is picked up at 8:05 and dropped off at 4:30! This is much better. He is in ROTC and seems to like it. He is also taking a digital media class and that is going well!

This is my last semester of grad school. I am taking two class, which both involved intelligence and achievement testing. I have to get 160 hours of internship hours through my school. I am going to be practice the testing on my honey and Jacob on the weekend. I have a MAJOR project that is to be completed in place of a Master's thesis or Master's exam. I am still trying to figure it all out. I have a LOT of videos to take....giving assessments, mock consultations with a parent (my sister in law has agreed to help me), interventions (with my niece, but this one is not videos), mock ARD meetings and a few others. Lets just say I'll be BUSY...between family, work and grad school!

Jacob was home this past week for a few days. His semester starts on Monday at TSTC. He will graduate in May of 2016. He is no taking classes that are all focused on his major, computer maintenance.

I'll try to post and keep y'all updated, but it may be DECEMBER before you see me again, or at least get more than just a few sentences in a post!