Thursday, February 21, 2013

It's Not That Simple

Today is SJ's 3 month hearing birthday. This is a bittersweet day for me. On one hand she is doing better than ever. She's enrolled in a phenomenal school and has both surgeries behind her positioning her for a world of success and opportunity ahead.

 One milestone we've had came last month when I called SJ's name while she was quietly playing alone. I repeated it louder and she still didn't respond. That's when I shouted "SJ Are you wearing your processor?!" I wasn't upset, but I immediately realized something was up because these days, as long as the conditions are right, she will always acknowledge me when I say her name. Sure enough she was not wearing her processor. I got excited over the fact that we are to the point where I can tell whether she is wearing it or not. You can see a difference. Unfortunately, just a few days later when I came to pick her up from her therapy session I knocked loudly on the open door. Her back was turned to me and she didn't hear me so I called her name. Still no response. I said "SJ it's mommy. Mommy's here. SJ are you listening?". Eventually she saw me and then jumped into my arms with all her might. I was discouraging that she didn't HEAR me. I believe she thought my voice was coming from the therapist and so she didn't care. I can guarantee that if she had recognized my voice she would have responded.

Fast forward to this past Tuesday when I had a meeting with one of the advisors at her school and she basically said SJ is not where they would like her to be at 3 months. No parent wants to hear that their child is behind or struggling developmentally. Her team feels like the reason is probably that her volume isn't loud enough which is an issue that needs to be addressed by her audiologist. Her ENT and the school have contacted her audiologist directly so we'll see how the next appointment goes.

I shouldn't be panicking about this news, but it's hard not to. I already struggle with worry in this area. I know she is doing well, but there are some days that I just do not see results. Lets say you wanted to loose 100 pounds and you know you had a lot of work ahead of you. You're motivated and ready to do whatever it takes. Then you went a couple weeks without seeing any change on the scale. Then your physical trainer pointed out your problem areas. You would be a little discouraged right?
There are so many wonderful things happening, I don't want to focus on the things that aren't happening, but so often people ask about SJ's Cochlear Implant and I hear things like "Wow, it must be have been exciting to watch her experience all the sounds around her for the first time" and it's really not like that. I was at our typical hangout (Chic Fil A play land) talking to another parent about her CI and he said "so that fixes it?" I wish I could impart the past 6 months of knowledge I've acquired about this device and her hearing loss and just have strangers instantly understand how complicated it all is. Back to the weight loss analogy, some people use gastric bypass surgery as a way to loose weight, but it's not like POOF you come out of surgery instantly permanently skinny. From what I understand there is still a lot of work involved. It's not like "that fixes it".

Oh, and just a warning, I have a few more blog posts planned about the Cochlear Implant process. This isn't going to become the hearing loss blog, this is just where I am at right now. And because I think it's important to remember where we came from let me end with some of SJ's progress and goals

In the past 3 months SJ has started to...

Turn when I say her name (not every time, but that's typical for anyone in my family)
Mimic the word "bubble"
Mimic the word "up"
Attempt the word "Open"
Dance to music without any visual queue
Respond to some sounds some of the time such as a baby cry, printer, white noise, crinkling paper.

I look forward to the day SJ...

 can recognize my voice
flinches or is startled by loud noises
gets annoyed by certain sounds
cares if the volume is on or off when she plays a game or watches TV
knows that her favorite TV show is on by hearing it's theme song.
will be able to identify basic body parts when she hears their names

1 comment:

{amy} said...

I'm sorry that you have experienced these discouraging moments. Do you sometimes get tired of baby steps & want a GIANT LEAP to happen?! I'm praying for strength, patience, continued healing & progress!