Friday, December 01, 2006

So many doctors, so little time...

Ethan's got a few things in the works that I thought I'd mention. So far I have only used the blog to discuss his implant, but he has several doctors and many issues that I guess some of you may not be aware of.

December - We see the ENT surgeon who did his implant surgery, presumably for a check-up, but Rich and I want to discuss getting Ethan's other ear implanted. We also see the developmental pediatrician, she's outstanding and we always look forward to those appointments. She is the one who said he might have mild cerebral palsy, so I'm interested to see what she thinks about him now that he's improved his gross motor skills.

January - We'll see the pediatric opthamologist to discuss his eye issues. He has a "lazy eye" that turns out frequently. In August she said to come back when I'm seeing it happen at least 50% of the time and that time has come. Recently I've even noticed his other eye turning out and that really freaks me out. She mentioned the possibility of surgery to correct it. We also see the pediatric G.I. specialist whom I'm very interested to speak with. He ordered tests that were done in August and we haven't seen him since, even though we know the results of the tests. Ethan has severe acid reflux and it has caused him to stop breathing and turn blue at least a dozen times. Fortunately we haven't seen an episode since May (they put him on a more aggressive medication), so now I'm just wondering when we need to increase the dose because I don't ever want to witness another apnea event as long as I live.

Before I close, let me just say that his physical therapist (who we see every week) has placed an order for a product called Benik's. They are neoprene supports that basically look like a wet suit. He'll wear them under his clothing (all the time) and they'll provide compression, support, and stability for his low muscle tone as well as provide proprioceptive input for his sensory processing disorder. She took 15 measurements of Ethan for this new "get-up" and it will arrive in 2 weeks. Ought to be fun changing diapers with that on!!

Thanks for reading,
Heather

3 comments:

momtotoes said...

Heather, you certainly have your hands full!

I am so inspired by your strength and calmness with everything!

Nicole said...

Hi - Aiden's Mom here :>
You sent us a comment on Aiden's Blog just a couple of minutes ago. Thanks for doing that - I had just put that posting live and was surprised to see a comment already. I am enjoying reading your Blog. Our experiences are so similar that it is really kind of strange! We even have the same brand of implant - and colour - from the looks of your pictures. Was Ethan born prematurely? Some of the other issues that you describe him having are very similar to ones that Aiden has had as well (we weighed just 1 pound at birth). Just to let you know, if your Opthamologist does recommend Ethan for surgery to turn his eye in, this surgery was one of the easier ones that Aiden has had. Really, by nightime on the day of that surgery he was running around like nothing had happened!
Are you having any frustrations with keeping the BTE mic on Ethan? Our Audiologist gave us some wig tape today to try - and that has certainly helped but it's still not perfect. There is a little girl in Norway (www.http://lotte-sofie.blogspot.com) who wears her BTE in a pouch pinned to her sholder. We might look into that option ourselves!
Anyway - good luck with your journey :> Perhaps we can keep in touch!

Anonymous said...

Mrs. Snedeker how in the heck can you type so much dont you think it gets boring