Exciting News from Vanderbilt

I promised my facebook people that I would write tonight about all the good news we got with A's doctors. That was before I drove three hours home with a fussy toddler. Now, I'm yearning for a hot bath and my bed. Ever faithful, I'll tell you all the good news without rambling too much...

The first bit of surprising news is that his hearing aids are actually aiding him. That was unexpected with his level of deafness. He is severe to profound in both ears without the amplification, but with the hearing aids on he is hearing at the level of moderate to severe. This means that if we are yelling in his good ear, he probably hears it as a whisper and only parts of the word. For example, if we yelled "ice cream" in his good ear, he would hear "Iii eee". Obviously this is not enough for speech development, but it is getting him used to experiencing sound. I was amazed at the difference at his testing with his hearing aids on! The audiologist was, too.

Little man was sedated again for an MRI/CT scan. He did so well. What a trooper I have! After the sedation, we carted him around to all appointments with little in his tummy and no nap. I expected it to be absolutely awful (and it was at moments) but for the most part, he soldiered on. I was nervous about the MRI/CT for obvious reasons, but today calmed my fears-

Dad to the rescue during a particular fussy appointment

We met with the surgeon who will perform the implantation. He told us:

1. Baby A is a candidate for bilateral (meaning both ears/sides) cochlear implants.
2. He also believes it unnecessary to seek genetic testing for a cause. He told us that from the information he has from birth history, infancy, and the recent tests that there's no reason to suspect any other underlying problems. In other words, some people are just deaf and there's no other reason for it. That made my mama heart happy. In the back of my mind, I was worried about a syndrome or something that we just hadn't discovered yet so it set my mind at ease a little. In addition, I was worried about Baby M.
3. The surgeon also wants to do the surgery ASAP. We do not have a surgery date yet, but they are working with our insurance for approval. He said the earliest he could get us in is likely August, but definitely before Christmas. It will depend on how fast we can hear back from the insurance company.
4. Lastly, he told us it was up to us if we wanted to implant both at the same time. I always thought, "Why wouldn't anyone want to do it all at once?" I assumed it was an infection worry or longer times under anesthesia. I was way off base, there. The doc said that there was a 10% chance that he could lose his balance and never regain it if both ears are done at the same time (If only one is done and balance is lost, the other side compensates and often balance is restored). That number seemed so high to us. It scared us enough to ask to have the surgeries done separately. It's not completely ideal, but he will have his left ear (bad ear) done first and then the right ear will follow within six months. It makes me a nervous wreck to know that he'll be having surgery twice, but that's what we've decided is best for him. For those of you who do not know, he will get his implant but won't be activated until 3-4 weeks later.

It's going to be a long road for him. We're excited for him, though. The speech therapist and audiologist are confident that he will excel with the implants. We were in the appointment for speech analysis and I was amazed at his ability to repeat and mimic. He does attend to sound when he hears it with the hearing aids and he is doing so well with sign language, too.

Picking out his processor colors

I'm proud of my boy and am so incredibly grateful for all your prayers for him over the last five months. Please don't stop. God is working a miracle in this sweet kid and I'm happy to be his mama and witness it first hand.

Audism?

It took me so long to write to all of you about my son's hearing loss, but now that I've opened that gate, this space has become an outlet for me. I can organize my thoughts here and write through my concerns. And those are plenty, let me tell you. Most of you reading this right now are hearing adults, like myself. It's likely that the extent of your knowledge of hearing loss is confined to old age or your cousin's best friend's sister's daughter who wears hearing aids. My point is that I just didn't know much about the deaf, Deaf, or oral deaf communities until now. Did I lose you? I meant to a little. There's so much I didn't know and so much I'm still learning, but I thought I'd bring you along in what I'm learning, too. I'm in the middle of writing a new normal into our lives and I'm trying to figure out exactly what that is.

Before Baby A's diagnosis, I knew nothing of the controversy that exists in the deaf and hard-of-hearing community. I had heard of cochlear implants, but I really wasn't sure what they did in comparison to a hearing aid. It's quite different (google it). What I'm finding now is that there are passionate, opposing opinions on how to deal with children who cannot hear. With the technological miracle of the cochlear implant (CI), came much praise for the devices that could make deaf individuals hear! At the same time, a whole community of non-hearing folks were cringing. What would happen to their culture? Would sign language be a dying art? Honestly, it was something I had never thought of. The only reason it came to my attention was because I was searching online for information for my Baby A and I came across a picture that confused me. It read "Stop Audism" in a poster board like quality. Immediately, I searched my brain for a definition of audism. Couldn't find it. I used google instead ;) Audism is the notion that one is superior based on one's ability to hear. Whoa. It felt like I was wading into a swift current of waters I knew nothing about. I was about to be carried off to who knows where. I thought about it for a few minutes and then shut down the computer because I felt overwhelmed. I tried not to think about it and I was successful for awhile until his next appointment with a new audiologist who asked me point blank- "What are your goals for him? Have you thought about if you want him to hear?"

Initially, I told doctors and whoever else asked that my goal for him was to function normally among his peers. I know people shy away from that word "normal"but what I mean is that I want him to communicate as we do because that's what I know. That probably is a selfish view, but at the same time it is the hearing culture that I'm used to. To extend that, though, I see the value in learning to use sign. I've always thought it was something we should be teaching all along. It certainly helped my first born before he was able to talk. I knew that I wanted my second born to expand himself and learn ASL, too. As I say that, it's my hope that he won't ever need it because I want CI for him so badly, but rather that he will use it to, in some way, identify with this culture that I might never be a part of or help others who started off much like he has. Who knows what God has in store?

I'm so anxious to move forward in all of this. I know you all know that. It has been my desire from the beginning to make these doctors work faster, to fight for my son. I know he's young and has the ability to overcome this obstacle, but time is so precious in language development and learning. Viewing research on the matter is sobering. As we wait on this and that, I can't help but look toward the future and think about what approach to therapy we will take. Should we stop using sign and try to teach him to rely on the sound he does hear? Is that even an option with his level of hearing loss? What happens if he isn't a CI candidate? Am I capable of quickly learning and teaching sign language? What if? What if? What if?

It can be overwhelming, but there are so many stories out there that are making me smile, too. Someone shared this on my facebook page today and it gave me so much hope:

"Today I attended my brother-in-law's high school graduation and was moved to tears by the valedictorian's speech. This made me think of you: he was born deaf and his condition wasn't detected until he was 4 years old. Against all odds and many negative opinions of "experts" who said he would never be successful in school and may never learn to even speak, he graduated with a 4.69 GPA and delivered one of the best valedictorian addresses I have ever heard. God is so good and I know He has great things in store for Abel too!"

I am confident that God is working for the good of us because we love him. I'm happy and anxious to help my boy in any way I can. Thank you for your prayers during all of this. I feel them.

Currently

Excited About: Being cleared to workout again postpartum. I'm tired of my achy back, soft body, and getting kicked all day long. I can't wait to hold little baby M in my arms and be able to put him down every so often so I can work out! I want to run again. I want to be fast. I want those endorphins.

Reading:

(Just Finished) 

(It was good)

Feeling: Oh, pretty good. The stress level is down a bit, I'd say. I am working ahead in the class I'm taking right now so that I won't have a ton of stuff to do as baby's due date gets closer.

Crafting: I'm going to give this a whirl. I bought all the stuff earlier this week-

(not my photo)

Also, I'm working on a display board for my sweet middle child. It is a work in progress, but it will hopefully help him to communicate by pointing to it when he needs something and is frustrated. It has basic tasks and items we use on a regular basis.

Working On: Counseling 603, Catching up on laundry so I can wash and organize tiny baby clothes, and creating new designs for my shop

Grateful For: I got a call early this week that they found some loaner hearing aids for Baby A! I was thrilled and so thankful. They won't cost us anything and he can use them as long as he needs them. He has to wear them at least three months in preparation for the cochlear implant process.

Thank you (a hearing update)

I found out today that our insurance won't cover any of the expense of A's hearing aids. We are signed up with a program specific to TN that will eventually pay for the hearing aids, but we will have to wait. No one seems to know how long. I've been frustrated at this process because my hands are always tied. The doctors/audiologists agree that he shouldn't wait to start using the hearing aids. While they won't likely help him to hear, they will keep the nerve active so that when he eventually (hopefully) is implanted with the cochlear device, it will be beneficial for him. Some people say this particular program will get organized within a month or so. I've also heard stories of folks who ended up waiting 6-9 months to get them to pay. That is not an option.

I've been calling them all day today to find out more information, but it has been to no avail. I can't get them to call me back. We are likely just going to bite the bullet and pay, but in the back of my mind I'm thinking, "How many more expenses like this will pop up?" Between all the medical bills and the new babe on the way and the new house, I feel so stretched financially. Not a day goes by that I don't think about finding a job. I don't know anyone who would hire a pregnant gal who is due in just a few months, but it's a thought I entertain.

In addition to that news, I also talked with an audiologist who said that his hearing loss was likely genetic. We will go for testing next month, but she said due to the history of his child birth (normal, natural) and babyhood (normal), she could see no explanation for it. The degree of hearing loss he has is not something that infections could cause. Which means, we should definitely do genetic testing to see how at risk baby #3 is for the same issues. Of course, that makes me quite sad. 

I was feeling so overwhelmed by it all today and then I got to the mailbox and found a card addressed to my sweet boy. Inside were names of all the people in Philadelphia, TN who had been praying for him and that brightened me up. Thank you all so much for your prayers.

God is writing his story and mine and I wouldn't change a thing. I just need to be reminded occasionally that He's in charge. We have nothing to fear.

"Cast your cares on the Lord and he will sustain you..." - Psalm 55:22