Finally!

Earlier this month we went to Utah to have a consultation with a new ENT Specialist. I was so apprehensive about the visit, and I think Rob was too. We were hoping above all that he could give us an honest, direct, final answer about Calvin's hearing loss and long term prognosis. Frustratingly, that's not what we got. I have learned the hard way that it takes an enormous amount of patience and perseverance to be the mother of a child with special needs. 

    We genuinely liked Dr. Shelton and feel like he was being completely honest and leading us in a good direction. He was kind and intelligent and was very respectful of the challenges we've faced and the time that it took us to come to his office. I was very impressed with his presence and how respected he was by his staff.

The Nurses really fell for him and spoiled
him with Cheetos

Waiting to see Dr. Shelton

     He and his Resident, Dr. Mann, reviewed his MRI and CT scans for some time, consulted with their radiologist  and then very tenderly shared his opinion, which was that he did not feel that there is an auditory nerve in Calvin's right ear. He feels that the Dr. and Radiologist who reviewed his scans here in Boise were mistaken and that what they interpreted as a nerve wasn't really one at all. He requested that we go back to Utah on the 26th to repeat the MRI, on a higher resolution machine. IF a nerve was in fact observed there, he suggested that he might send us to Michigan to a very specialized hearing center. They would be able to test his nerve with electrical impulses to see if it can be stimulated that way. If it can be, then he would agree to do an implant. With the information that he had, he couldn't really tell us how much hearing, if any at all, Calvin would receive from an implant. This is what we were told before, but at least now we understood where the confusion was coming from. 

One of the benefits of going to Utah so much is
that I get to spend more time with this sweet lady,
my Grandma Bringhurst. I am so happy that she has
been able to meet Calvin and get to know him. 

     On the way home from Utah, Rob and I had a lot to talk about. We felt like we were finally coming to the end of all the guessing and second guessing and that we were really ready to accept that this was it. Had we been told a year ago that this is what we would be facing, I don't know that I could have made it through the last year. I am glad that I was shielded from knowing this to allow me time to get my feet under me, and give me something to hope for. Honestly, I was sad, but doing ok. Rob is trying. I think he's at the point where he is having to finally grieve and come to terms with his own hearing loss as well as Calvin's. Grieving is very different than feeling sorry for yourself, and I am doing the best I can to support him and allow him that process. He's honestly going through a lot right now. He's STILL on crutches after breaking his leg and having major surgery on it in December. He will be completely non weight bearing until the middle of March at least. Breaking his leg was one of the hardest things he's been through. The pain is constant, he's missed so much work that he's worried about his job, and the medical bills are staggering.

    During the weeks between our initial consultation and Calvin's repeat MRI, we had a pretty decent month. Calvin turned 1, and had a great birthday party. ( I'll post more about that later. ) We have gotten even more involved with the deaf community and tried really hard to ramp up my efforts to not only learn ASL but to get Calvin to use it more. He's doing really well. His personality is so funny, and stubborn. He doesn't like to be held, or sit still. He is so inquisitive and always exploring, touching and feeling everything in his environment. 

     Monday of this week, we headed back to Utah to repeat the MRI and maybe finally, finally know where we were headed. I honestly didn't know what to think or feel about it this time. I was nervous, but not hoping for or expecting a different answer. Truth be told, I was getting really, really burned out on the up and down. Hearing no, we can't do an implant, then yeah, we can, but it might not help him hear, to no we probably can't.... it was a lot of emotional up and down and I think I had just learned to put it in neutral and coast along. Not feeling anything is better than disappointment. 

    We stayed in a hotel in Salt Lake City the night before his appointment. We were going to stay with my cousin, but her whole family was stricken with the nasty flu! We are hoping and praying that they are all feeling better now! Just before heading out the door to his appointment, I went into the bathroom and this is what I saw: Little man being a naughty, normal little boy. I laughed so hard I cried. I had forgotten how fun and BUSY this age is. It doesn't matter where we are or what we're doing, he's getting into something. He reminds me so much of my son Zack at this age. 

  The MRI went really well and was over with pretty quickly. It took Calvin about 2 hours to sleep off most of the anesthesia, but he was still a very drunk and floppy baby when he woke up. He couldn't focus his eyes or hold his head up, and was getting very angry about it. Poor little dude! While he was sleeping, I had time to study his face and marvel at what a beautiful child he is, and how blessed we have been to have him in our lives. He has changed me for the better, and I am forever grateful for his sweet, sweet spirit. 

    The rest of the day was pretty uneventful. We tried to visit some of my family, but Calvin was not really in the visiting mood. He was still groggy and drunk and couldn't even crawl. So we loaded up the van with some vintage treasures my mom saved from my grandma's house for me and headed home. 

    Again on the drive home, we had a lot to talk about. What did we want to come of this, what did we hope to have happen. I asked Rob, "what do you want for Calvin?" His eyes filled with tears and he said, " With all my heart I want my son to hear." I didn't have anything to say after that, so I just held his hand. He was hurting, and I needed to give him space and honor that. 

     We didn't expect to hear any results from the MRI until the next morning, so we were surprised and disappointed when we got to the Idaho State line and realized that we had missed a call from Dr. Shelton. Ahhhh! Talk about frustrating! He left us a voice mail and said that he had good news and would call us the next day. 

     All day yesterday I was anxious to get a call from him. I tried to decide ahead of time how I would react in case I had misheard and it was more bad news. Finally at about 4:30 Rob called from work with Dr. Shelton on the line. He didn't waste any time letting us know the good news. Not only does Calvin have an auditory nerve in his right ear, but he also has one in his left ear and Dr. Shelton sees no reason why we can't go ahead and implant based on the new images he had. Rob asked the one question that had been weighing heavily on both our minds, "How much hearing will he receive?" And Dr. Shelton replied with,"A very normal range of hearing. At least for normal speech and language. He should be able to mainstream school as well." And Rob said," So at least human voice range?" And I heard his voice break at this point and could completely share his joy at knowing that soon his son can hear him. 

     It has taken us almost a year to get to this point and it really didn't even seem real! Dr. Shelton got off the line and Rob and I continued to talk for a minute about what this really means for us, for Calvin and our family. We both agreed that no matter how much hearing Calvin's implant will give him, he is still deaf. He will still need to sign. There will be times when he can't wear his implant and will need language still. 

      Before we even knew for certain what the good news was, we had decided we still wanted to talk to as many people who have gone through the process of a cochlear implant as we could.I think the most important thing that I have learned from talking to them and just through our experience in general, is that we all have an identity that we can choose for ourselves. This has been what I have struggled with the most; it is a very big deal to take a course of action that could change your child's identity. 

       However, I have come to accept and appreciate that Calvin was born deaf. As deaf as you can get. He hears nothing. At first I was sick and panicked and felt like I needed to fix it, or change it. That was the most tragic thing I could imagine and didn't know how to navigate my way through it. Fortunately though, I had been prepared LONG ago to understand, accept and love the deaf community. I am proud of my son no matter what his hearing status is. A cochlear implant or even hearing aid, doesn't change who he is. He's a smart strong, happy baby. Right now he doesn't hear. In a month he will. Either way, he's still Calvin. He's still deaf. The implant doesn't change that he is a child of God, who loved him enough to let him face these challenges and come into my family. It doesn't change that he is bright and beautiful and funny, and I am grateful that I realize that now. 

     I hope beyond anything, that later in life he will look back and be OK with the choices we made for him. I hope that he will be strong and happy and will reach his full potential, no matter what tools or devices he uses to get there.