Hey Everyone! We are now post activation and everything's going pretty good! I have a ton of updates for many different things from follow up specialist appointments.
First things first! Cochlear activation!! The morning started off stressful!!! We left at 6:30 am for St Paul for her appointment was at 8. So for a usual 50 min drive, there should be plenty of time to get there, figuring in traffic right? WRONG! We were a half an hour late and picked the wrong parking ramp to park in. we had to run through the hallways of 3 connected hospitals to get to where we needed to be. We were literally RUNNING! at one point we got lost in the maze and I just sat down and cried. a loud ugly cry lol. (I'm completely embarrassed now thinking about it) I thought for sure they would no longer take us being we were so late. Luckily, they still did! So to start off they hooked Celinas receiver device to the computer, and explained they were going to start sending beeps and tones through at to see what paths (from ear to brain) were firing and which weren't. They started with high pitch sounds and would then do some lower pitched sounds. For Celina it was excruciating. She screamed the entire time. We kept taking breaks but every time we started again she would instantly start crying. I just wanted to stop. I was sweating, She was sweating, we were trying everything to get her comfortable. We had to keep going because it was the only way to get a map of her brain, to know what areas to turn on at what decibels in order to even get the device activated in the correct program. So for celina hey found what areas were working and what areas were not. The areas where it was not working for celina, they were able to go through different pathways to get the entire range of sound to understand speech. These are called speech sounds and are the sss, eee, ooo, aaah, and shh sounds. without being able to hear these sounds, understanding spoken language is extremely difficult.
So after we completed the mapping with the computer (during the mapping, they had the microphone on her device turned off so she could only hear what was coming from the computer, she couldn't hear us or anything else in the room), she turned her cochlear mic on at what we would consider normal volume where she could hear us talk to her. The first voice she heard was Ryan saying her name. She looked up at the ceiling and then started crying all over again. So her Audiologist turned it all the way down and slowly turned it up as we were talking to celina. When celina started crying we knew the volume was too high and went back to the previous volume right before, and set that as her first program. We got a remote with her cochlear where you can have different programs you can set. Once people have finished their mapping, this is used for different situations. Like if you're listening to a lecture in class or something, there's a different setting that will eliminate background noise and that sort of thing. But for right now, when we start, we use it for mapping. So what the audiologist does is set all 4 programs with Celina's map, but each one a little louder. So we started at 1 and over the weeks have been turning it up a program as she tolerates it. Celina has done very well with this. In just a few days she was at 4 with no signs of her being uncomfortable or flinching. Later this week we go get 4 new programs to keep turning up! They do it slowly like this so its not such a shock to their systems, and they don't grow to hate sound.
We've definitely noticed her hearing some sounds. She looks up at the ceiling because she doesn't understand where the sound is coming from. The first day, after we got home she heard my brother in law talking with his deep voice and just kept looking up and around and just giggling! It was the most heartwarming thing! She seems to hear deep low sounds best, tho the other day I jingled some bells and she seemed to hear them. Hearing is also completely exhausting if you've never done it before. The first and second day Celina took 5 hr naps! She didn't nap much before this, but now she naps everyday!
So Celina got the Kanso device as her main device and the N6, a typical behind the ear as a backup device. The Kanso is an all in one device where the microphone and everything are all in one magneted to the side of her head. Awesome! for adults or older kids maybe? For celina its just not the right fit right now. maybe when she's older and walking, but right now its just a pain. Celina is a sensory seeker. She sensory seeks through her head and head bangs everything from my face to the floor. Her favorite position is laying on her back, also knocks it off, and she rubbs her head on the floor as she crawls. This thing Is CONSTANTLY falling off! So at the next appointment they are going to turn on her back up processor and will probably use that until shes older. The N6 doesn't have as much weight on the magnet and is ore flat whereas the Kanso it thick and bulky. Also the behind the ear part of the N6 can be easily held up with a headband, or can even be clipped to her shirt. So hopefully next week will be a bit easier and I won't be reconnecting her CI every 2 minutes.
https://youtu.be/OGixcMph5FU - During her mapping
https://youtu.be/rkvcRy76NbQ - First time hearing dad
https://youtu.be/BRn3FtCRGAw - hearing us talk to her!
Celina also had her follow up swallow study last week. I was really hoping we could be done with thick it at some point in the near future. Celina is on Honey thick liquids. Right below that is nectar thick, and below that is regular liquids. So at the study they said they were going to only test nectar given they know she already does fine on honey. Well she failed nectar so bad they wanted to test honey all over again. Thankfully she still passed honey but I thought after over a year on this there would be some improvement. Unfortunately there's not a whole lot they can do but keep her on the thick it until shes able to not aspirate on thinner liquids. I'm unable to even give her fruit that has a lot of juices, like watermelon, mandarin oranges etc. due to her aspirating the juices. So unfortunately we just wait.
Celina had her followup ophthalmology appointment as well, And next week she will be getting glasses! Nothing detrimental. But glasses nonetheless. Dr. told me hes always so shocked when he looks in her eyes and sees how much her colobomas touch, yet she does sooo well with her existing vision. This made me feel so much better! They are also putting transition lenses on her glasses where the lenses will get darker when she goes in the sun. This is because of her colobomas. The sun really hurts her eyes, so hopefully this will help! The thing I worried about is how Im supposed to keep all this gear on her head! One cochlear, One hearing aid (they want her to wear her left just in case they find a nerve) And glasses. Eii yi yiii! Wish me luck guys!
Scoliosis! Celina had a follow up with them as well, and you guys!! I amazed!!! Her spine is looking sooo much better! Almost straight!! Turned out it was her muscles not the spine itself. Her muscles on her left side of her body were so weak she couldn't hold that side of her body up. They showed me the X-rays next to each other and i'm just amazed!! I give huge credit to her therapists who have been working so hard to get her strength up. And of course to miss Celina who works so hard in therapy. Needless to say I'm happy!!! Couldn't ask for better news!!! Things are starting to look up! I think were done finding out new, hard to take, diagnosis'. And the things that can hit during adolescence Im prepared for. Not saying they will be easy, I just at least know what can possibly be coming vs. being in the dark and having it come out of nowhere. I just hope things stay looking up! Its a good feeling after being terrified not knowing what could be next for almost 2 years strait. We've come so far!
