Monday, September 8, 2008

Wish Us Luck.

Okay, just a warning.  This might be a really boring post.  with that said: 
M.K. gets most of her therapy (physical, occupational, speech) through preschool.  But all that went away with summer vacation.  She seemed to be gaining momentum with her speech and I didn't want her to lose that.  She still sees a physical therapist at Primary Children's, so we asked about getting speech therapy there just for the summer.  Of course we had to have her evaluated, and get approval from insurance.  Don't you love all the red tape?  Well, part of the evaluation was to have her hearing checked to rule out any speech problems that may be caused by that.  No worries, she has always responded to sounds and seems to hear just fine.  Just another hoop to jump through.  well, yeah- But we had to go back three different times.  She couldn't respond well enough to all the little beeps to be able to tell anything.  They tried a machine that didn't require any feedback from her.  They stick a probe in her ear.  It sends out a sound.  The sound goes through the cochlea where it is amplified and sent to the brain.  The brain then sends it back into the ear where the probe measures the sound that her ears are hearing.  On our third visit, this test said that in both ears there was no response on the 4th level of sound.  That might indicate mild to moderate hearing loss.  The only way to tell for sure would be in the booth test, which she couldn't respond to.  So, this Thursday, September 11, we take her in to Primary Children's for a sedated ABR.  Another hearing test that should be able to tell us for sure what's going on. 
Can I just say that I hate sedated tests? In our previous experience with that, they have me hold her in my arms while they give her a shot of something in her IV.  Within seconds, she goes absolutely limp in my arms.  That's when they take her away from me (!!!) and strap her down to send her through some giant machine.  Even though I know it's just a test, and I know she's okay, every motherly instinct inside me just goes nuts!!!  Maybe it's just me.  Maybe it's because I've experienced one of my children dying before.  But there's just something about it that throws me over the edge.  Has anyone else had this experience?  I hate it. 

If the test shows that there is hearing loss, she may need hearing aides.  At first, I thought "Great.  One more thing that's 'wrong' with her (I hate that word wrong, but you know what I mean) One more thing to have to worry about and deal with."  I called my husband, and he was discouraged too.  His thoughts were:  "One more thing to make her different to other kids, and to keep them away from her."  That didn't help me to feel any better. But I kept thinking about it.  If there is a problem, hearing aids can fix it.  Isn't it a blessing to have a fix?  There are so many other things that can't be fixed.  And if that problem is fixed, isn't there a possibility that it would help her speech too?  Then, I thought some more.  I've heard of people who lose their sense of balance when they take their hearing aids out - balance comes from your inner ear- wouldn't it also be possible then, to imagine that hearing aids might help her walking and movement a little bit too?  
I'm probably getting carried away here. Of course I'd prefer that there is no problem in the first place, but if there is--I'd rather be hopeful than hopeless. 

So in the end, I'm not looking forward to the actual test.  But I'm prepared to be okay with whatever outcome there is.  I think.  Just wish us good luck.
And by the way --we never did get speech therapy over the summer! lol! Don't you just love red tape? 


Happy in Holland said...

I'm sorry to hear about your newest "stress". It seems that there is always something new to stress over. I have never had to have either of my kids sedated, but that is partly because, if at all possible, I refuse to do it. I am terrified of that. Unless it is absolutely necessary, it doesn't happen. I'm proud of you that you are looking to the positive in the situation. I agree with you about how if there is a hearing problem and it does get fixed, I think it will tremendously impact her speech and even her balance. So that will be good for her. I'll be thinking about you guys as her test comes up this week. Good luck!

Aprilyn said...

I found your blog from my friend's Parenting Partner blog. I hope your test goes well and you get some answers. I hate not knowing.

My special needs child is a 3 yr old boy. He has been "different" from the day we brought him home from the NICU at 3 weeks old. We didn't know what part of his differences were just that he was preemie and had such a TRAUMATIC birth. So, here we are at age 3. I know something is not right. He is currently on Risperdal to help control his severe anger problems. We still STRUGGLE with eating (he as maybe 5 things he will eat and he's getting sick of those). I think the hardest thing is that people look at him and say "He's just fine." Yeah, but they don't see the meltdowns over not being able to wash his hands soon enough. They aren't the ones getting up with him countless times at night or worrying about what the heck I'm going to ATTEMPT to give him for dinner. His teachers at pre-school say he's great and he knows the rules. He is NON STOP at home and HYPER with a BANG but at school, he "zones". My 9 yr old saw him at school one day. The 9 yr old was at Gym, the 3 yr old at Recess. My older son told me that the 3 yr old was just sitting there on the ground doing nothing. My older son said hi to him 3 times before he responded. Yeah, he's JUST fine. Totally normal...yeah, right. Just because you can't see the disability doesn't mean it's not there!
Sorry this was so long.