70% of the time! Yes, we are making progress each time.
He has a BIG day coming up on the 19th when he will have a sedated MRI and catscan and genetic testing and eye check and ABS to test for his hearing and Renal ultrsound ALL IN THE SAME MORNING! I am really excited to see just what he has in there for an ear canal and cochlea and all that...and I learned about a little device they can put on the outside of the 'bad' ear to restore hearing, called a baha, I think. Even if he doesn't have the proper 'inner workings' if I understood it right. So that's exciting :)
He was SO happy to get home and get back to his pool! He's also getting better about letting me comfort him somewhat, and not putting his arms out to anyone and everyone! Baby steps. :)
I am learning with him that he needs to LEARN what love is and not only HOW to love but how to RECIEVE love. Its completely new to him. He has never had anyone there to love him. To comfort him. From the day he was born he was 'alone'... left to fend for himself, with no nurturing.
I'm surprised he's as sweet and gentle as he is. (although I did see him 'head butt' Michael the other day :)
But hey, we ALL feel like doing THAT sometimes!
(just kidding of course, Michael is my big sweetie) ;) ;)
some days you want pecans, some days you want walnuts...and some days you just get stuck with peanuts.
My cousin's daughter, who has no canals in her ears, has the baha, and it works just fine. She has the inner ear though. I hope it could work for Artiom too! My cousin's daughter wears her baha in a headband, but I think she could get a magnet under her skin to attach it to when she is more grown (she's an infant now)
ReplyDelete70% is better than 100%. You're the perfect Mom for him because you see the progress where others may just see the 70% crying issue!
ReplyDeleteAbigail just had a sedaded ABR test as well to check her hearing. She will get fitted for a BAHA in the next few months. When they are younger (5 and under) the BAHA (bone anchored hearing aid) is attached to a headband and just rests against the bone behind the ear. It vibrates softly and transmits the sound into the inner ear. Abby's inner ear on her microtia side is perfect and her hearing in the normal ear is perfect. So the BAHA will bypass her outer deformed ear and put the sound right into the inner ear, thus stimulating brain development and nerves. When they are older 5+ a surgical procedure can be done to put a snap like piece in the bone behind the ear, it heals for 4-6 months and then the BAHA can go back on and just snap on, thus eliminating the headband.
ReplyDeletefor us we might wait until 7-9 years to go forward with surgery because that'll be around the age that she can have ear reconstruction. If we go for the reconstruction route it might be able to restore her hearing and then she wouldn't need he baha anymore.
I'm so excited to hear that he did better at the doctors and all these tests will give the doctors a clearer plan of action.
How's his nutrition going, we're you able to try any samples of the products I mentioned?
Love to hear he's doing so well!
KRistin
Oh what a sweet baby :) hey 30 % happy is good! he is so cute :) hugs!
ReplyDelete