Wednesday, February 13, 2013

CMV and UTAH

There are big things happening in Utah right now. . . HB-81 has been brought to Utah's attention. It is a bill that will educate pregnant mothers about the dangers of contracting CMV and how to prevent this nasty virus. For those of you who may not have read, CMV (Cytomegalovirus) is what caused my daughter's deafness. I contracted it while I was approximately 7 months pregnant with Savanah. To learn more about please visit www.stopcmv.com and read the side description of this blog. This bill is the first of it's kind. Utah is the first state to hear it openly before the House of Representatives. Yesterday it passed unanimously, 71-0. Now we're onto the Senate tomorrow. This is BIG stuff. This is what the STOP CMV family has been waiting for! Please continue to stay tuned. . . GO UTAH!

Friday, February 8, 2013

Haters

For those of you that read this blog and so freely feel the need to share disrespectful and hateful comments regarding Savanah and our decision as her parents to give her every opportunity to hear and live in the hearing world Please keep your comments to yourself. This blog is an opportunity for myself and Savanah to record and share our experiences living and learning in a CI world. We have trials and tribulations like everyone else and for those of you that believe that we chose this for her, Savanah wanted another implant. This was 100% her decision.

Tuesday, February 5, 2013

Activated

Savanah got her second implant activated on January 29th in Logan! It was another one of the experiences that Desmond and I are able to sit and look at and think WOW! This is for real. This amazing medical technology that we have chosen for our deaf child is working. It's working and she can hear us and communicate with this world. She doesn't have to rely on ASL, or reading lips. She doesn't have to be another statisic. She can live like the majority of people in this world. Although we know that CI's are not a cure for deafness, they are one of the most incredible gifts we could give her and they are a tool in helping her live a productive and successful life. If she so chooses, she may take them off whenever she likes. She is still getting use to that second implant but she is beyond thrilled to have brand new processors. We upgraded from the Freedom to the N5 with Cochlear. We've all been very impressed with these. They are lighter, sleeker and much more attractive, and come with a remote and killer rechargeable batteries! Yes!

Bilaterals!

January 9th was a momentous day. Our little sweetie received her second cochlear implant. Her surgery took place at the University of Utah. Dr Shelton performed it once again. My mom and dad were in attendance along with Gracen this time around. It has been almost 6 years since her first implant. It was such a wonderful day, although emotions were tough too work through, we were so excited/nervous/ecstatic for this big day. The decision to get another implant wasn't an easy one for us to make. Hence the 6 year gap. Savanah was such a brave little girl, for being 8 years old, this little girl of ours never once shed a tear, stated she was nervous, nothing. She was one brave chick. She sure is something else!
The surgery process began at 9 AM that morning. We arrived at the hospital and began the registration process. We were shown to the surgical center and shortly after arriving there, we were all taken back to have Savanah begin to prep for surgery. The anethesiologist came into the room and spent a lot of time with her. She explained everything that was going to happen and put in an IV. She was absolutely wonderful, she definitely put everyone's minds at ease. Savanah was taken back to surgery shortly after, she was all grins and giggles. . . The surgery was about 2 1/2 hours. Dr. Shelton called the front desk and told us everything went exceptionally well. The implant was placed perfectly and there were no complications with placing the electrodes. We were relieved. We were taken back to see her in recovery about 10 minutes later. She was very groggy and started having a little unexpected time breathing. After a few breathing treatments, she started coming around. We spend the remaining of the afternoon and some part of the evening in the surgical recovery room. She was able to eat and drink, keep things down and get her pain under control. All the while, still with a smile.
We arrived home from SLC that night around 8 PM. It had been a long, very eventful day! Savanah was exhausted as all of us were. It was crash time. She spent the next 4 days recovering well. We removed the bandage the next day and were pleasantly surprised to find a smaller incision and not quite so much hair shaved this time. Her pain was under control the whole time and Savanah only complained of a few headaches. She returned to school 5 days later. She had many friends looking out for her, bringing her several little surprises and treats. Looking back on this decision, it was definitely the second best one to the first one!

Sunday, December 23, 2012

A little rant. . .

It's getting down to countdown time, Savanah will be receiving her 2nd implant in about two weeks. I am both scared and excited for her. I keep thinking, will it be just like the last time? Will her surgery run as smoothly? Will she recover quicker? Will she instantly hear better? Will that new implanted ear know exactly what to do? I'm not sure the magnitude of this surgery has set it quite yet. We've talked about it, but mostly the last little while the focus has been on Christmas. I'm sure after the holiday, we'll be switching gears quite a bit. I've prepared to take a week off from work to nurse my baby back to health. Hopefully she will not need that full week, but her anxiety driven mother might. I keep asking myself. . . Am I making the right decision? Did we all make the right decision? Is Savanah feel pressured? Does she even want this? How could an almost 9 year old really know if she wants this? We've seen amazing things with other bilateral implanted kids. I'm praying that this experience that we've seen will be the same with our little Savanah. Awhile ago, Savanah was complaining of severe headaches. They would usually occur at the end of the day. They would almost blindside her. She would want to take her implant off and go in her room. She would sleep them off. They were happening frequently, they were also happening at school. I took her to her neurologist where he questioned the idea of "straining to hear" - this is something that commonly happens to people who cannot hear very well. It's hard to try to listen, especially with one ear. Especially when you're not use to it. So not only did we come to the conclusion that having bilateral implants should help the headaches, it will allow her to hear a little easier in a school environment. She shouldn't have to "strain" to hear. I am still so inspired by her everyday. We just recently had her IEP at her mainstream school. She receives services from a wonderful guy a few hours a week. He checks up on all the mainstream kiddos who transferred from USDB. We sat down with him, the principal and her mainstream teacher. And from all the testing and remarks, they all were in agreeance that she is right on level with her mainstreaming peers. She is reading on level, doing math on level, spelling on level. Doing everything on grade level And there is no bullying going on! Yeah!

Thursday, December 6, 2012

January 9th!

So Savanah's surgery date is scheduled for January 9th. There are all sorts of emotions flying around about this. Excited, a little nervous. You know the jist. I mean, it's major surgery, who wouldn't be a little intimidated by that? And being a medical professional and knowing everything single thing that can happen has never been good for my soul but I have complete faith that everything will go according to plan! We've been asked by a few different people why we are choosing to implant her other ear when she has done so well and is hearing just fine. Well I'm here to clear this up. . . "just fine" is mediocre. We are born with two ears, most of the time. We are designed in life to hear with two ears. Savanah has done exceptionally well with just the one implant but I want to give her the opportunity to advance. To not tire out so quickly in school after listening all day, I want her to have the advantage of localizing (finding the sound) better, I want her to have the option of implants. She can choose later to wear them or not to wear them. She is amazing! Technology is amazing! Every single person that has ever been involved with her education, therapy, training is amazing! I hope only the best for her, that is all we can ever do for our children. Be able to give them endless possibilities. And that my friends, is what we are trying to do for Savanah.

Thursday, October 11, 2012

BIG news!

I would like to make an announcement! 2013 will be another BIG year for Savanah. At the beginning of the year. . . Sometime in January. Savanah will be receiving. . . Drum roll!!!!
ANOTHER cochlear implant! Wahoo! She has been approved. We are just waiting for a surgery date, which we were promised will be in January. :) We are so excited for her! She has wanted this for some time! So glad we can make it happen.