So a lot has happened since my last post…this will be a very informative update on Asher and all of us.
Asher is now 7.5 months and doing wonderfully, he is growing healthy and lights up the room. He has been very sick through the winter with countless viruses but fought them off like a warrior. He just started sleeping through the night (thank God almighty!) but still refuses naps longer than 20 minutes.
We were told early on that Asher would stop jabbering and cooing by 6 months old, but we are proud to say he is anything but quiet! He has high volume and we don’t plan on making him quiet down (even though we have had few complaints from others) you count every blessing when you realize that’s what it is.
He is wearing his hearing aides almost all waking hours, as we have been told of the many benefits of doing this. Though Asher is deaf, his hearing aids give him sound. He is not able to hear words but he hears fluctuations well, the more sounds and fluctuation he hears the easier learning to hear will be for him after surgery. Each day I practice early intervention voice therapy with him. This is usually during breakfast and lunch, as I feed him I make noises such as “Uh Oh” or “AHHOHHHAHHH” and he tries to repeat me! This is how we know he hears fluctuations, by his response and his trying to mimic what he hears. Every other week we have in-home therapy sessions with our deaf and hard of hearing teacher (she also services Jax). During those times she works with Asher and me on sound intake and response.
We have recently made a big decision to change hospitals. We are now receiving care through Johns Hopkins. We feel this was the best decision for our family. Since we made this decision the ball has been moving fast to implantation day. Asher has had 2 booth hearing testings, which brought back a higher reading in hearing then the original ABR testings did which is why we quickly started with early intervention and constant hearing aid wearing.
We have met with the surgeon and he gave us the clear for bilateral implanting. This was great news for us, it means only one surgery!
He has his CT scan on April 27th, where they look for skull structure to see if he is a candidate structure-wise in the cochlea. We are certain he will be as we know the cause is genetic (next blog post will go into detail about that) and Jaxson’s CT scan came back good 2 years ago. As soon as that’s cleared we will be able to lock in our surgery date, we are currently penciled in for the 2nd week of July.
After surgery, if all goes well, Asher will recover very quickly. The doctors say that the pain will be very minimal. We then wait 30 days while he heals fully and the cochlea rests, these 30 days are called “30 days of silence” for a cochlear implant patient (don’t worry we are actively signing which I will go into more). After the 30 days of silence, we have activation day! This will be Asher’s hearing birthday, lucky guy gets an extra birthday out of this deal! On this day we get his external processors and, at the hospital, he is turned on to sound via CI’s for the first time ever. Now here is what I want to make clear to everyone, this does not mean Asher will immediately begin to hear like you and I do on activation day. This means we start the process of introducing his brain to sound. Asher will learn to hear with his brain, not his ears (I just think that is the coolest thing ever). This takes time and lots of mapping (adjusting of the device and sound input) appointments. He will hear sound but it will have no meaning to him…yet!
We now move into therapies, starting from activation day Asher will start therapy sessions at Johns Hopkins as well. This is the biggest reason we chose Johns Hopkins, they offer a specialized therapy called Audio Visual therapy (AVT) that other local hospitals did not offer. AVT has been proven to be very helpful in proper, speedy speech and language development in a CI child. The AVT therapist will work with myself and Asher a minimum of once a week at Johns Hopkins Hospital for at least a year. During these sessions, we will be teaching Asher the English language. Remember Asher has not heard a word yet, only sounds…he does not know English as he has not heard it. Hearing infants hear the English language even while in utero. The way he is taught English is through pictures and then sounds, and words to go with the picture. I have not yet been in a session I don’t have much more information than that!
We have been actively learning sign language, and using it with Asher. We plan to continue to teach sign language and have it be a language for our kids. If all goes well with his Cochlear Implants, Asher will be fully talking and caught up by age 3. However, whenever he removes his devices he will be deaf, this is why we as a family would like to accommodate him with sign language as well! Though Asher will hear and communicate well, we encourage anyone to learn even just a few signs if they would like that would bless as all very much.
The rest of us
Jaxson and Colby are doing well too. We recently thought Jaxson’s hearing dropped, we took him for a hearing test and turns out he had an ear infection. We were grateful his hearing is stable. He just started t-ball for our local t-ball rec, and he loves it! Colby had a recent question, “Are all babies deaf?” Bless his sweet heart. He loves his gymnastics class and to ride his bike. They both love learning sign language and using it with their baby brother!
Bryan and I learning daily how to operate in an overly busy lifestyle. Bryan recently started a side business and still works 40 hours a week with his day job. I am managing the 3 boys and all their different schedules which is a lot when you add in the weekly hospital appointments. Also pursuing my masters. We are getting more sleep now that Asher in sleeping through the night (and by more sleep I mean more than 3 consecutive hours a night). Neither of us has ever been more overtired and overwhelmed then this season, God has proven to be our rock; He has given us hope and endurance that can only come from Him!
We thank you all for your continued love and support. Each text, email, phone call, smile or hug goes further then you would think. I never knew that someone simply asking “how are you” would be enough to bring tears to my eyes. It does and it means the world to know we are loved. As we always say, we are open to questions and invite them. We are not so open to opinions on our choices for Asher and his CI’s and his care in general, but we are learning to ignore them and not be offended.
- Please pray for Asher’s CT scan in the 27th. We are hoping he sleeps through it so no sedation is needed. If he does need sedation, prayers for that.
- For his upcoming surgery
- For Jax and Colby as they learn in grow in life
- For Bryan and I as we carry stress and overwhelmed feelings, for God’s strength and touch.
- Most importantly for a continued joy!
Much love to all, thank you for reading!