Monday, August 27, 2012

Auditory Nueropathy

Kelson had his second appointment with the audiologist today and had another ABR (Auditory Brainstem Response) test.  They want him to sleep through the test so we are to bring him hungry and awake.  He wasn't real interested in falling asleep at first, but gave in eventually.

They put electrode type things on his forehead and behind his ears.  Then they put a tool in his ear that makes different noises.  I'm not sure what exactly is happening but I can hear a difference. 

We got pretty much the same results as we did at our last visit.  It appears that Kelson's ear is working but his brain is not responding in a synchronized way.  I asked the audiologist what exactly that meant and she compared it to a radio that wasn't quite set on the right station.  You can understand part of what is being said, but there is a lot of static. 

Apparently Auditory Nueropathy is not a real common thing (much like the other issues that Kelson has already proven he was too tough for, like they hydrops and they chylathorax).  We visited with a lady at ECHO today that has worked with other patients with this diagnosis and she said she had worked with 8.  All of them had different challenges associated with the auditory nueropathy and different things helped them to cope with it.  Some have hearing aids, some have had cochlear implants, some use American Sign Language some use cued speech.  Each child is different, and as much as I hate the idea of waiting, that's all we can do right now.  Hopefully Kelson will mature out of some of these issues, and if not, we'll just have to figure out what works for him.

We also got a call from Early Intervention today (FINALLY).  The coordinator will be coming Friday morning to meet with Trever and me.  After that we will meet with a therapist to determine what types of therapy Kelson needs.  We have been recommended for speech and hearing help as well as developmental help.  They will work with Kelson on these things, but they will also help our family and friends to get the resources that we need to work with Kelson.  If we need to learn sign language, they will help us get the resources we need.  They will work with Claire for ways to play with Kelson to develop his communication. 

This is just another hiccup that we'll overcome together.






Sunday, August 26, 2012

4 months



Surprise!  I finally updated the blog.  I'll do my best to keep you up to date from here on out and I hope to go back and add some pictures to the blog as time allows.  Needless to say, things have been a little crazy around our house for the past couple of months.  Both of us are back to work full-time (minus doctors appointments) and both kids are going to the sitters (Kelson's first day picture below)!


Since your update at 3 months, our little man has been a growing, smiling, bright eyed delight.  He keeps his eyes on his big sister, likes to cuddle with his mama, and upside down in daddy's arm is where he likes to be when the witching hour comes.  (Although he seems to be outgrowing his fussy times....thank you God!)

We've had a couple of different doctors appointments since our last update.  Last week he was up to 9 pounds 13.5 ounces and got 2 more shots and an oral vaccine.  He's still a little guy but he's growing and that is what is important.  We met with an ear nose and throat doctor at Carle to check on his hearing but really didn't learn much.  We go back to to ECHO tomorrow for another appointment with the audiologist.  Hopefully I'll update after that. 

Claire spent a week at Vacation Bible School and really enjoyed herself. She was a little timid at the Friday night program, but rocked it on Sunday!

Trever made a couple of trips to Springfield for the State Fair.  I figured I had missed enough work I didn't need to take another day for "fun". 

Trever and I took a trip to chicagoland for the wedding of my good high school friend Livi.  There four girls from our group there...they forgot to tell me to wear black! :)
I got a girls night out with couple of college friends and can't wait to do it again...soon!

Trever preached two sermons.

Claire went to practice school...or as normal people would call it...pre-school open house. 

And finally, this weekend consisted of fun at the Fall Festival, dinner with our new neighbors, checking out a new church, the Builta reunion, and school shopping with Claire. 
And finally, the picture some of you were waiting for! :)