Well today was the hearing appointment for both kids. I really had no idea what to expect or how long it would take.
We went to Children's in DC, which is a hospital... But hence the name, I knew it would be good and have heard sooooo much about this hospital!
Our first appointment was at 9:40, but actually didn't get into room until 10:30 and doc came in around 10:40... But good to know they take their time with each patient, right? I took snacks for kids incase they started acting up thinking ok I'll give them a snack... Well... There are signs everywhere with
No food or drink... Oy... If they didn't hurry up I'd be busting out those
Dr. Reilly is a very nice down to earth speak your language kinda guy. He didn't tell us anything we didn't understand! Let's just say I didn't have any questions after he explained everything! Neither did Curt! :)
He came in and bc Keegan was in bathroom he looked at Ella first. We were supposed to tell him what we knew about her which wasn't much... But did tell him about her mouthing words to copy us but never fully speaking out loud... Also about hearing certain sounds/things... Sometimes hearing Curt sneeze (for those of you who never heard him sneeze, it's loud...)
So he checked her ears and said other than some wax they were clean and healthy...
Same thing with Keegan.
He wanted to do a hearing test bc it was very important on how to follow up from there. He first cleaned out their ears...
He used a little suction thingy, like the dentist does but with way less power and much smaller! ;) He said to hold their hands bc sometimes kids get scared esp dealing with ears they can't fully see what's going on and since they can't hear... But they didn't budge! They even had a smile on their face! :)
At this point I'm wondering what they are thinking... We kept smiling and signing good job, I love you... They did really good!!!
Across the hallway for their hearing test...
Went into this really cool majorally sound proof room... I would LOVE one of these rooms... ;)
I went in with Keegan and Ella bc they were smaller rooms... Had to tell them pretty much everything we already told doc. Just so they know what they were dealing with. They asked me if one of them would be comfortable being alone with one of them and I said Keegan would...
I went with Ella in the next room.
The lady put on some headphones and showed Ella what she wanted her to do. She pointed to her ear and then her eyes lit up and then put a block in the bucket... So Ella did it, but failed bc there was no sound when she did it! Im
thinking, is this going to work? But she turned the sound up again and her eyes lit up and she put the block in
the bucket! The lady said after a few
times wow she's a smart cookie! She was very pleased with how well Ella did and did say that she got more out of Ella then she does any other 3 yr old! ;) Then she put a headband on her and one part was behind ear and the other was more on side of forehead... More sounds but it was more like it was vibrations to the brain... Can't fully explain it bc I don't fully remember! She did pretty good with that test as well.
We finished and went back to where Keegan was and they wanted to talk before talking with us. Then they said would you like your husband back here as well? I said yes please. :)
So they said that Keegan did not respond to the tests at all, but they want to do another test. He would need to be asleep so they can watch his brain waves to make sure he really doesn't have ANY hearing. If there is even the slightest bit of hearing we would try hearing aide before going to for the cochlear implant. They will give him something to help him sleep but it would be non-ebrasive. Completely safe...
I just called to make that appointment but got put on hold and then had to leave message, so I do not know when that appointment is yet...
Ella is considered slight/severe/moderate hard of hearing... English terms, she can hear, but can't fully hear everything or make out what you are saying. But it would explain when I called her name every now and then, I know she could hear me. And of course most of Curts sneezes!!! ;)
We will try hearing aide first and if that doesn't seem to work, next route would be the implant.
The lady that did Ella's test said she talked to the cochlear implant team already about Ella and they are super excited to work with her and try the hearing aides! :)
We will be dealing with Children's in DC from here on out. Each child will see the same person so they will be familiar with that person and it won't be changing...
They may not get the same person due
to their ages and how severe each one is.
Also found out our doctor is one of THE surgeons who puts the implants in. So not only is he our doc but he would be the surgeon as well, which I think is awesome! He told us he wrote a 4-5 page article on implants and told us where to find it to read it. Also a good website on the implants to get more info.
They both need a CT scan to measure how big their "snail" cochlear is. If you don't know how an implant is put in.. Basically they drill right into that snail shaped piece in their head. It's about the size of a dime.
Once they get an implant, if they have
any hearing at all, they won't have any. So if I was to go in hearing and all and get that implant, if I don't have that implant on, I could NOT hear you. Make sense? :)
Doc is very hopeful that if hearing aide doesn't work for Ella, that they BOTH would be able to benefit from the implant! He didn't seem at all that it wasn't an option.
Yes, even though Keegan shows no signs of hearing he could benefit from implant, but need to do one more test to make sure he's completely hard of hearing.
I'm waiting to hear back from the radiology to have the CT scan scheduled, then in a month the doc wants to see us again. He said he won't get results or see or read them
until we go in and we all find out together how big their "snail" is. Why am I calling it a snail? Because it looks just like a snail! ;)
He did say that Keegan would most likely still need to use sign to communicate. Once you are between the ages of 6-7 it's very hard to put all those sounds together and then into words to spit it out.
Ya know Kit from Night Rider? Well that's what we will sound like to them with that implant. ;)
He normally does implants by the age of 6 months. Still young enough for the child to figure out sounds and speak
them. Once you get older it gets harder for them to figure out that grid pattern... How he put it..
Ella still would have that chance to figure it all out. Not 100% sure but a little bit better chance than Keegan bc of his age.
So basically the only thing we know right now is that it is hopeful for them both! Will try hearing aides on Ella and then do the BAER test on Keegan to make sure he has no hearing and if he does, will try hearing aides first. If neither works, we will talk cochlear implant.
May know more after Christmas or the first of the year...
Whether the hearing aides or implants work or not, I know Gods got an amazing plan for these kids. And the other 4! ;) it doesn't matter to me if they can't hear me or anyone else, I just want to be able to help the best I can! God has been so good and I know He will be with me on this journey bc it has just started! Many more appointments are yet to come... I mean we have 2 more for both each and then another doctor appointment, so that's 5 more appointments for them!
That's it for now I think... ;)