I'm soooo BEHIND in posting!! Its like catch up day! ;) taking the time to post a few... ;) So sorry with the bomb shell of 4 blogs here in a row... ;)
So Monday, Dec 31, 2012 we left just after 11 to head to DC to get their hearing aides.
Curt and I were talking on the way up how each other were feeling... I can't speak for him, but me, I had NO clue! This was THE day we had been praying for and had NO clue what to expect! Read all kinds of things of how they could respond and talked to others as well... So it really was up in the air! I was just gonna go with the flow. ;)
We got there a little early, but we got right in. We were at the Scottish Rite Center in DC. The place is awesome, quiet and have gotten in and out right away, no waiting! :)
We got to the room upstairs and she said she wanted to test their hearing again, esp Ella since it had been since Oct. She has something called an Enlarged Vestibular Aqueducts. In English that means she did have hearing and it's gotten worse. Infact it will get worse, so much so that the hearing aides won't work. So we take into consideration if the hearing aides work for now, do we do the surgery, does the "team" (team= Dr Reilly, and audiologists) think it will benefit, and how much will insurance cover, etc, etc, etc... So really that's not an option for now b/c we are trying the hearing aides.
Keegan was tested again as well, and basically his hearing aide is as loud as it will go. There is no more room for it to get louder, she programed it that way. Most hearing aides have a volume control on them, but with kids, they don't do that. They program it to where it needs to be and go from there.
Typically they do a "trial" period of 6 months with the aides, but as she said we need to move quicker b/c of their age. Esp Keegan who is 6. He will most likely need to use sign language to communicate. Again, we will sit down with the team and discuss whether the cochlear implant would be an option and good option for him.
The audiologist said we live in a hearing world, and being deaf is hard. Not impossible, but we want to do want we can to help them. (her words)
We go back Feb 6th to Childrens. We see the speech pathologist, and then will see what's next. She told me they want to move faster than the normal 6 months, but not too fast for us. She wants us to be comfortable in all the decisions.
So back to the appointment....
She did Ella first. She did the hearing test, we talked about this and this and how this and that works, etc... I sat in a chair and had her in my lap and she hooked the aides up the computer. Then put them in her ear, and then after a while she said ok Ella, can you hear me? And then she said where's momma? So I said Hello Ella, I love you.
She just turned her head and smiled! she heard me! She heard me speak the full sentence, and not just a word or part of word! I was about in tears! ;) (we have video of both Ella and Keegan, it's on youtube and my face book page...)
So she tested a bit more and talked some more and she was just looking around trying to figure out whos voice belonged to who! ;)
Then she went to Curt and then it was Keegans turn! He was SOOOO hyper and giddy that day! Its like he knew something was up, and he was jsut very energic! More than normal! ;)
He wouldn't sit still.. then finally it was his turn and she hooked the aides up to the computer and then put them in his ear. She said we will prob hear feed back from his b/c of the volume and now loud they are. Which is true.
He prob wouldn't be able to have an implant in his left ear due to some "abnormality"... She didn't have the specific term b/c she couldn't read the medical term. She didn't make it sound like it was anything to worry about either. So I don't know.
He got his turned on and since it's been 6 years for him to hear anything, his brain doesn't know how to react. He just now turns his head at noises, but they have to be loud enough. I don't know how much he really is hearing and understanding. But it isn't going to happen over night!
Just praying that God guides in the right direction and what to do next. I don't know if will do the implants on either one of the kids. But I do know that we are praying for what God wants us to do. We will do what we think is best for the kids, and if implants is the way to go, then we will. But it is NOT a decision we will be taking lightly.
We left the office and headed home. We made it 5 minutes out and Ella was shutting her eyes, I was like, wow, she's going to go to sleep with them in and hearing all the noises! I put a movie in for kids just to keep them a little more quiet on the way home. ;) I don't normally put a movie in unless we are going someplace far! So it was a special treat! ;) We were hearing alot of feedback with Ella's aides b/c of where her headrest is on her car seat. So I turned around when we were in a tunnel and took them out... Then she was awake and bright eyed. It didn't dawn on me right away that she was trying to shut out the noise by closing her eyes... Didn't quite work.
Then we made it to right before Brandywine and Keegan was starting to cry. He was "sleeping" for the last 20 minutes, which is NOT Keegan. he does NOT sleep in the car, doesn't matter how tired he is, he just doesn't! So the fact that his eyes were closed and he wasn't moving, I was like wow....
Then when he started crying we knew it was the aides. it was enough for now. So Curt pulled into the Aldis parking lot and popped them out. As soon as they were out, he was smiling and ok and wide awake! Then it dawned on me that both of them heard things they weren't used to so, closed their eyes to shut it all out!
We got home, ate the supper i had ready, thankfully! I was soo exhausted that cooking dinner was NOT on my mind! So thankful I had time to put it in the crock pot AND turned it on! BONUS points there! ;)
After supper we decided to try them again for a bit and they saw me grab them and smiled and was ready for them to be put in! So that's good right? ;)
It's been just over a week with the aides and they are ok with having them in. They haven't fussed or asked to have them out. There are times I forget to put them back in after naps... But trying!
Like I said, Keegan's brain doesn't fully understand he needs to respond to the noises. His brain is on overload. It will take him a little longer to fully realize what's going on. Also with his age b/c he is older. But I know that God has a plan and I trust Him fully with whatever needs to happen!
Ella has tried to say FOX. I had Kotah's language box sitting on my lap and there was a picture of a fox and she looked at me like what's the sign? Me, I don't know the sign, but it's a FOX. So she said FO, I said yes, good job, FOX, so she said FO again! And smiled! She heard me and tried to repeat me! She hasn't really tried to repeat us on any other words just yet... But not pushing. Just trying to sign and talk at the same time and get them to understand a bit more!
So that's it for the hearing aides for now... just basically taking a day at a time, which is what I've been doing! ;)