#magicearsrock

As you know- McKenna was implanted in Dec 23rd, and has been " hearing" since Jan 7th. What an amazing 2 months! She now babbles, stops " talking" when others are talking to her, and repeats noises that we make. She even claps when we say "Yay!" Which means she hears us, and knows how to respond! It's so amazing to see her make these strides! 

Introspection

Today I realized something that while I knew intellectually, didn't quite sink in. My daughter will always be deaf. She will be a deaf woman, a deaf mother, a deaf professional. While I pray it won't define her, it will certainly impact her in ways I can not even imagine.

How will she hear her child when he/she cries? What will I do when she is bullied? How will I be sure that I both get her the help she needs, yet not allow her to use her impairment as a crutch/ excuse?

And while most of my posts so far have been about Mckenna's hearing loss, I worry too about my oldest. How do I ensure that she knows that just because her sister takes more time, doesn't mean she has more love? How do I be certain she knows that her life does not revolve around her sister's hearing loss, while still being sure she watches out for and protects her sister? Will she come to resent her sister for the extra time she took?

The last 8 months I guess I have been so focused on the sprint to implantation, I did not REALLY recognize the long distance run that is having a child with hearing loss/ cochlear implants. 

Today is the day

Today was it. The big day! No return from here. Today McKenna was implanted.

Many of you know that McKenna received bilateral cochlear implants today.

Our day started off at 4 am, getting washed in her special antibacterial wash and heading to the hospital. We arrived at 5:15am, registered, and headed towards the surgery area. After some more waiting, the anesthesiologist and surgeon came by. They chatted with us, gave us a run down of what was to happen. The nurse talked to McKenna, and of course she reached out her arms. Suddenly, she was gone from us. The nurse said " we better go with it- say goodbye" and suddenly it was all too real. 

As they took her away I began to cry of course. After all, what if I never see her again? What if something goes terribly wrong? The anesthesiologist was kind enough to offer to text me throughout the surgery, and I pounced on that. I stared at my phone- willing him to text me. I don't know what I would have done without those intermittent texts telling me she was sailing through.

Finally, the text I was waiting for. " all done- headed to recovery". Suddenly- a huge weight was lifted from my shoulders. Our surgeon came out to give the report..... All good!!!! No hiccups or concerns. In fact, it was nearly his personal best as far as time. Then he showed us some pictures that were taken ( he teaches other surgeons how to do this) and I wasn't prepared for that. Her intubated, eyes taped shut. And her little face so swollen and bruised after surgery.

We were called back, and as soon as the doors opened I could hear her crying... This aweful terrible cry she has never done before. Despite all our best efforts she couldnt get comfortable, and the nurse got her some more pain meds. More crying from me feeling so helpless to make it better, and more pacing and stoic silence from the hubby( he won't admit it but he was trying not to cry).

So here we are, trying to sleep

Off the anesthesia, dreading the car ride home. I know we made the right choice for her, and I am so glad that this part of the journey is over!!

The emotions are intense... Fear, anxiety, excitement, relief, helplessness, and joy, all rolled into 1 giant ball. Here begins our new family journey!!!

The scary stuff

Today I received a scary phone call. McKenna's ANC, or a measure of her immune system , is dangerously low. This is due to the medication. While I know the medication is doing her good, this SUCKS! I now have become worried for every tiny minute bug out there. Terrified

Here is the issue. What I want to do is keep my entire family inside forever. What I know I must do is allow my family to live normal human lives. 

So, we will be on a modified quarantine. I spent a little time in " damn it we can't catch a break" land, but now I've jumped on " kick this ones butt too".

We are all different ...... And in that, we are all the same. 

Our first movie

Today we went to our first movie as a family..... Planes. It was a very cute movie and both girls did well. Interestingly enough, I believe McKenna heard some portion, although we had removed her hearing aids as we did not want to overwhelm her little brain. Visually, she was mesmerized. 

Reagan was very good as well. She ate popcorn and candy, and sat in her seat for over an hour. Very proud momma. 

Reagan is so concerned about her sister, I see her frequently looking over at her to be sure she is ok. Often she informs me that her pacifier or magic ears are askew. She often laments that her car seat doesn't allow her to hold her baby sisters hand. I just love that. 

This is our first time at the movies. Daddy was getting popcorn

Diva Reagan

Most excellent news

Received some news yesterday which was... Well......... Life changing, again. But in a good way.
Here is the back story.

     Due to McKenna's deafness, we are considering cochlear implants. This choice isn't right for all children in all situations, but RJ and I feel it's right for our family and the way we want to raise our children. Part of that process is to determine her " candidacy". This includes 1. Does she have the right " kind" and " amount" of hearing loss ( check)? 2. Does  the family have the support ( emotional and financial) to make sure the child receives therapy to make the surgery worthwhile?( check) 3. Does the family seem motivated to attend the multitude of speech classes ? Will they work with the child at home? ( oh, double double check). 4. Lastly, the anatomy of the inner ears, which I have no control over ( you all know how much I hate that).


So McKenna underwent MRI last Friday. This was originally to discover the structure of her inner ears. Due to recent  developments we also had some concerns for possible brain abnormalities. To say this was scary would be the understatement of the decade. Now, I was no longer worried about whether my child would be able to hear to speak, but rather could she even cognitively understand speech? Would she ever be able to communicate in any way?

She underwent the anesthesia required for the MRI and RJ and I waited patiently for it to be over, the pager they give you planted firmly between us. She did well. Now we wait.

Yesterday, we received a phone call, and the result we had been hoping to hear came forward. " NORMAL". Brain is normal, ears are normal...... Normal normal normal.  The relief is overwhelming. Our baby is our baby, no matter what. This will allow her more chances in life, which is our goal. So, last candidacy point checked! Now, nothing stands between us and the implants but time! McKenna will never not be deaf, and implants don't " fix it". She will never hear as we do, as her sister hears, but she has a fantastic chance to learn to speak, learn to hear music, learn to interact with her peers. She has, as never before, the chance to partially gain back some of that lost sense. She has the chance of hearing her mommy and daddy tell her we love her.

The day we discovered....the big " D Word"

 The first day of McKenna's life, she was perfect. 10 fingers and 10 toes. We could not have been more happy. That evening she underwent hearing screen and failed. At that time, we were informed it was probably just fluid and she would come back. She did, and again McKenna failed. I was terrified.... How could this happen? It's my perfect baby!

Two weeks later she was screened again ( another fail) but by then I knew there was something off. She was not responding as her sister had.....as I knew she should. On May 7th, we received official diagnosis.McKenna had profound hearing loss on the left, and severe loss on the right. She was deaf. She was deaf and I couldn't fix it. She was deaf and I didn't know why.

After the crying( not going to lie, several days of that) we got to work. Research, calls, you name it. The right ENT, the right audiologist. Appointment after appointment.

So now, here we are.McKenna's deafness is likely caused by CMV, a virus I contracted during pregnancy. There are so many unknowns for her in regards to long term hearing and educational abilities.

There are so many more questions still to be answered. What will we do about the hearing loss? Has she had any brain involvement? Sign or no sign? Mainstream school? Deaf school? Who to see? We are lucky that my job offers me the opportunity to have access to the best in the field. Still, the choices are overwhelming.

What I do know is that our baby is not broken. She is not lesser. While we will do everything in our power to be sure she gets the help and care she needs, I don't ever want her to consider herself in any way inferior to her hearing peers.

So stay tuned. With her sister at her back, and those bright baby blue eyes, I can tell it is going to be a wild ride.