Sedated BAER

After 6 months and countless visits to Seattle Children's for behavioral hearing tests we decided to get some solid results by conducting another BAER test on Elin. Now that she is older she needed to be sedated for the procedure since kids her age don't simply sleep through them anymore. As with any anesthetic procedure we run a risk of causing Elin to seize. So we were attempting to gather as many results from behavioral testing leaving the sedated BAER as our last option.

Unfortunately, Elin didn't like being compliant in the sound booth and playing the 'conditioning game" in order to get reliable results. On some occasions she would be conditioned and we could gather some information but she didn't last long so we would have to quit and come back again. It was hit and miss with her- sometimes she would cooperate and sometimes not. After her last failed attempt we threw in the towel and decided to schedule her for a sedated BAER.

At this point we were getting antsy to find out whether or not Elin would indeed fit the category for a cochlear implant. We have been to all the preliminary appointments and she has had all the speech/language testing done. All we were waiting for was the results of her behavioral hearing test.

This past Friday Elin underwent her third BAER test and we have the results.  The sedation went very smoothly and she didn't have any scary side effects. She was under for a little over 2 hours and the audiologist conducting the BAER got a full set of results so we now have a clear picture into how her brain is registering sound. It would be nice to have the behavioral piece as well to round out what Elin actually hears using her aids and with out them, but for now this will have to do.

 Her hearing loss has progressed (meaning it has gotten worse). Her hearing loss in her right ear is now considered severe to profound and her left is severe. So basically the hearing aid on her right side isn't doing much good now. It is amplifying the sounds but Elin's cochlea is not able to detect specific speech sounds so it isn't really benefiting her in any way. Ironically, Elin has been removing her right hearing aid every chance she gets. I can't have it on her in the car or she ends up yanking it out and chewing on it. Obviously this is a safety hazard not to mention an incredibly expensive teething toy. I have been using her FM system religiously. This is device that helps Elin hear my voice from a distance. I attach little "shoes" to the bottom of her hearing aid that act as receivers. I then wear a microphone and no matter where I am in the house she can hear my voice as if I am 6 inches from her ears. It is a very cool tool to have and is used in classroom settings for kids with hearing loss all the time. The self directed hearing aid removal corresponded to my increased use of the FM. Perhaps she takes it out because it isn't doing much
good, or perhaps she is tired of hearing my voice inside her head 24/7. Who knows?

So where do we go from here? The results will be sent to the CI  (cochlear implant) team and they will meet and decide if Elin is indeed a cochlear implant candidate. From the looks of it she most definitely will be. Then we have to make a few crucial decisions:
1. Do we want her to undergo the surgery and have a cochlear implant. ( YES )
2. Which manufacturer do we choose? We have three different choices of implants and all have advantages and disadvantages.
3. When do we have it done and do we have the emotional wherewithal to endure another risky and invasive procedure?

I'll keep you posted.

BUT in brighter news- Elin is belly crawling!

She is now 20 months old and can make it several feet across the floor (without rolling) to get into stuff. Basically the only things so far that are motivating enough are her binkies and her sister's stuff. There are some advantages to having a child with motor delay- one is, selfishly, I don't have to worry about her getting into trouble or chase her around the house. I fear those days are about to end but I am so very glad she is on the move.

She has also started feeding herself almost exclusively She loves to shove as much as possible into her mouth and seems to be quite proud of herself. It's much easier to just stick a few pieces of banana on her tray instead having to mash it up and feed it to her all the time. She and I were ready for the self-feeding phase.

Lastly- we attended the Kindering Auction about a month ago. It was a wonderful night and we had many friends and family members join us. They raised a record breaking $575,000! The video they created that Elin and I were featured in turned out fantastic and I didn't end up sounding like a blubbering, rambling idiot as I feared. I'm not allowed to upload or share the video however. They show it again at the fall luncheon and want to keep it a surprise for that event. So if you really want to see it before October, you have to come to my house and I can show it to you.