Thursday, April 7, 2011

the sounds of my son, again

I first posted this in March 2008 on my other blog. I think I wrote maybe 5 posts before giving it up and this one was the last one.
It explains up until that point what was going on with DJ's hearing. He did have a total of 3 surgeries and his hearing is perfectly fine now, but he does have a couple of prosthetic bones in there and so we made the decision that he will not play football even though it is something that he really wants to do.
I thought about it when I mentioned DJ not playing football in my post growth charts. Looking it over made me realize how stressed I was about what was happening to him.
Even though I know next to nothing about football, it still makes me sad that he can't play. He hardly ever talks about it anymore, but there was a time that he talked about it constantly -- couldn't wait until he was old enough to play...

the sounds of my son
At around age three, my mother-in-law questioned my son's hearing... his speech was a bit off -- and well, he didn't seem to hear us. He was well behaved -- but didn't listen.

Had his hearing tested, he was fine.

By age 4 it seemed to us that he had issues with speech development. Had him tested. He did have a bit of a delay, but he didn't "qualify" for help. We lived in a very small community at the time and options were limited.

Had him tested again in preschool for speech. Didn't qualify.

Kindergarten rolls around ~ he gets his sister's teacher from the year before, who already knows his situation ~ she has him tested immediately.


He now qualifies for speech!

At the same time, the school nurse notices a bit of a hearing loss in his left ear. The new speech therapist (who was the same one who tested him before...) recommended him to an ENT because she believed that his speech problems were caused by having never developed a proper tongue thrust. (he did have this problem) She thought he would benefit by having his tonsils removed. He sees the ENT. She agrees that he should have his tonsils removed, but says the hearing loss is from an ear infection.

He has his tonsils out right after his 6th birthday. (My youngest daughter was born a month later!)
We move home to SF.

On the way to his 7 year old well child visit he tells us in the car, "Maybe Dr. Lee can fix my ear while we are there."

No Joke.

Of course, we question him ~ and he hasn't been able to hear for at least a year! (since the ENT said it was an ear infection)

So! -- Hearing test, otolaryngologist. ~ then a CAT scan... he has a "growth" next to the bones in his ear.

They think they know what it is... but it’s in the wrong spot... they had to "consult" with other doctors. (my mother-in-law just passed away from cancer two months before all of this) They have to remove it, but it's not an area that you go into lightly. (nerve damage, balance, etc)

First surgery, all of it is removed. It's a congenital cholesteatoma. (not cancer) It was something he was born with, and when he grew, it grew. (it can also be caused by numerous ear infections, but not in his case) She also had to remove two of the bones in his ear. Recovery time is 6 weeks. No showers (ugh!) No "strenuous activities". He is a 7 year old boy -- its summer... !

I have him telling everyone his scar came from a sword fight with a pirate!

We let him get a mohawk between surgeries...

Second surgery, August 7th, they replace the bones that were removed with prosthetic ones. Bionic Ears! No idea if it'll even work... may have to have a hearing aide even after all of it. (that was one of the scary things -- they were not worried about fixing his hearing, they needed to get the growth out!) Another 6 weeks of DJ bouncing off the walls, but not being able to do much....

Post-op and hearing test. His ear is perfectly healthy AND his hearing is (almost) completely normal! The little bit that is not in the range they want may even improve over time.

Right before his 3 month check up, my husband thinks his hearing has worsened. We wait until his next hearing test, but they confirmed it. Again, moderate to severe hearing loss. Talk to the otolaryngologist, she has no idea why it stopped working. "Let's wait and see and check him in three months."


Just had his hearing test last week and nothing has changed.
The audiologist recommends a hearing aid. Go to see the otolaryngologist she says that a hearing aid would be fine, or she can try to "tweak" the prosthetic.
We are going for the surgery.
We have scheduled for the middle of June, as soon as school is out.

Today we received a FM System for his classroom. It transmits the sound of the teacher's voice directly to him. I have seen others where the teacher talks into a big handheld microphone, but his is brand new so it just clips on. His side just fits into his (good) ear and sort of looks like a Bluetooth.

I hate all of this.

I'll say though ~ nobody could ask for a better kid! He has such an easy going personality. He was never scared (except the morning of the first one) and was so pleasant to all the nurses... everyone was surprised how well he did.
But this time he seems a little nervous. He wants my husband to stay with him overnight instead of me!

No comments:

Related Posts Plugin for WordPress, Blogger...