Brand New Kicks!

Today I took Calvin to get his braces fitted for his feet. This has been a little bit of a work in progress so I'm glad that they're here and that we can take some big steps in the right direction!
        It wasn't until we moved to Texas that we were told he had low muscle tone, but I had suspected that something was wrong for a long time. He wasn't sitting up on his own until he was almost 11 months, and he wasn't walking independently until almost 20 months. When he did start walking, it was very hard for him and he could only manage several very fast, clumsy steps at a time, and then he would fall down. His gait was awkward and he honestly looked like he was drunk. This is kind of normal for new walkers, but after a while it should go away and it never did. When we lived in Boise I had mentioned several times to our physical therapist that I was concerned about his lack of balance, and how delayed he was with sitting and walking, but she brushed it off and said his lack of balance and coordination was probably due to his ears. It still didn't sounds right to me, but what did I know? His inner ears are completely deformed, so I didn't doubt it.
      After we moved to Texas and things finally calmed down, Calvin wasn't walking any better. I was a little frustrated but we had so many other things to worry about that it didn't take a priority for me. Then I got him enrolled in the Early Childhood Intervention Program here in Texas. It's very similar to the Infant and Toddler Program for the state of Idaho. They both service children with developmental delays due to Blindness, Deafness, and other disabilities.
       On the first day of our assessment, the intake coordinator came with a physical therapist. I was really annoyed by this. His need for the program wasn't because of a physical delay or deformity, but because of his hearing loss. I didn't think that a physical therapist would be able to accurately assess his hearing and need for intervention.
       It turned out that George is a good man and competent ECI Team member. Calvin really likes him and especially his backpack, where he always hides a sucker for him to find. On the first visit, George noticed Calvin's drunken sailor gait within 5 minutes and went to work on him. He told me that Calvin has very low muscle tone and that it's actually affecting his bone development. His feet and ankles were turned in so far he was walking on the outside edge of his big toes and that's about it. I told him he had poor balance because of his ears, and he very gently told me that no, that's not why he had poor balance. He laid Calvin on his back and lifted his legs up and let them fall. His legs fell apart in a perfect split with his ankles to the floor and it didn't even phase Calvin. He said he has poor balance and walking skills because his muscles aren't able to communicate that he's falling, or not supported.
      He also lifted up Calvin's shirt and asked if I had ever noticed that his rib cage flared out. I said YES! I had pointed that out several times to anyone who would listen and everyone said, "it's probably fine. It will change as he grows." What's happening is that his abdominal muscles aren't strong enough to hold his rib cage in a nice contour, so they're flaring out. The treatment for this is that we have to tape those muscles in position to support his rib cage until they are strong enough to do the job on their own. He does NOT like the tape, not even if I let him scribble on it (that usually works for band aids).
         So, we went and got fitted for braces, we tape him up and we work hard! We do physical therapy every day, in addition to signing and speech therapy. It makes for a busy day and a tired baby. It's a challenge to continue to find ways to make it fun and seem like play, but Calvin is usually a good sport about it. I was so excited that we were able to get his braces in CUBS gear!! Maybe his next set will be the Saints? Either way, watch out! He's already busy enough. When those braces come off he's going to be running faster than I can catch him!

Speechless

Today was Calvin's first Speech Therapy session since his processor was replaced. Calvin has previously had therapy, but due to moving, my work schedule and implant issues, it has been spotty at best. Now that everything has calmed down, we are hitting it hard. Twice a week we are in clinic at The Speech Emporium in Cypress ( I hate the name of that place, it sounds so cheap and does not at all reflect the level of professionalism that we are given).

Because of the inconsistency that we've had before, I didn't expect a big response from Calvin today. However, what we got left me speechless.

The first amazing thing that happened is that when we were all quiet for a moment, Calvin turned and looked at the clock and then pointed to it. I hadn't even noticed it ticking, but he did. I was so surprised that he could hear something so quiet. It was such a good affirmation that his implant really is working and that he can hear again.

As we worked with the speech therapist, we started with his ling sounds. Those are simple sounds like 'oo' 'aahh' 'buh buh buh' 'eeee' and 'mmmmm'. Usually Miss Jennifer will hold a toy to Calvin's ear and motion that he needs to listen. She covers her mouth with a hand, and then when she has made the sound,  and he hears it, he can drop the toy in the bucket. He hasn't really alerted to any sounds made by human voice yet, so I wasn't expecting a response. But when she made the 'ooo' sound, not only did Calvin's face light up, but he dropped the toy in the bucket and said, "ooo". That is the FIRST TIME he has ever made a sound other than "mum mum mum mum" (That's an instictive sound. He didn't make it because it had any meaning to it, it was because he can feel the vibrations on his lips). I was so taken aback and surprised that I started crying. I didn't expect a response at all. Usually I take pictures or video tape his important sessions, but I didn't expect him to start articulating sound today- especially after having such a long break getting his implant working again.

It sounds like such a little thing to hear a kiddo say "ooo" but to me it's priceless. Calvin's deaf voice is becoming pretty pronounced. While his implant wasn't working, he started making more instinctive, gutteral sounds. Some of them were more gurgling, and some are just hard to describe. Usually I laugh at them with him because they sound cute, and they're fun for him to make. They're sounds that feel good on his lips and tickle his throat. Then there are his sounds of frustration and anger. Usually it's just a VERY loud "uh uh uh uh uh" sound over and over again. When he can't find the sign language to tell me what he wants, or no matter what I sign back to him or show him or try to help him, and none of it satisfies him- this is the sound he makes. I've accepted that this is a part of him, and for the most part I can handle it. But there are times when it really does break my heart. It makes me sad when I hear other kiddos his age who are starting to voice. It makes me sad when were in public and he's mad and makes that sound and every parent within ear shot gives me a horrible look. It makes me sad when I am tired, and get frustrated with him for it. It's not his fault and it makes me feel terrible for being frustrated, but it's our reality.

I am grateful for the efforts that we've made to learn ASL. Even though we are working so hard to help Calvin use hearing and speech, I never want him to be in an environment where he doesn't have a voice, weather its spoken or visual language. I read a study once that stated the statistics of Deaf children who were sexually abused. It was staggering. I never want Calvin to feel like he can't tell someone if he's being hurt, no matter what environment he is in. I will do whatever it takes to give him a voice, and the ability to advocate for himself. I prefer to be the one who is left speechless at what a wonder this little man is.

Two steps forward, two steps back...

It's been a while since I've posted anything here.. And with good reason. We've been BUSY! We finished remodeling our house, sold it, packed it up and moved to Houston Texas. In some ways, I'm very glad that we're here. In others, it's very, very hard. Not all of my kids have made the transition well and it's been a struggle for some. I'll talk more about that later though when I find a way to articulate what we've gone through. 

    Yesterday Calvin had a pretty important Dr. appointment. His Cochlear implant has malfunctioned and we're not sure why. It started working sporadically at the end of August and by the end of September, not at all. I started with our audiologist and she tested the external part to make sure that it was ok, which it was. I was hoping that the problem could easily be fixed, but no. 

     It took some time and some effort and some tears but we finally got in to see a new Neurotologist here at Texas Children's hospital. This is the area where I start to miss Idaho so much. We had such an amazing team working with Calvin. True, Dr. Shelton was in Utah, but everyone that had already treated Calvin had a special place in their heart for him and really never made us feel inconvenienced by caring for him. That's not the case down here. His name on the schedule does not register any sense of excitement or joy for any practitioner down here. I feel very much as though he's just another patient. I miss the people who loved and tenderly cared for my baby when we were at our most vulnerable. They cried with us, and empathized with us, and I miss that sense of support and compassion. 

    I guess now the only thing to do is grow some pretty damn thick skin because everything I've seen about being here has led me to believe that I'm going to need it. 

     At our appointment yesterday I did warm up to our Surgeon, a little. When all this came down the pipes I put in a call to Dr. Shelton's office and was very touched by the fact that he took time out of his day to call us from home on a Saturday. He recommended our new Dr. and said that he knew him well. He didn't disappoint that recommendation. Dr. Williamson was warm and friendly, and concerned about the lack of attention his staff had given Calvin's issue. The crux of the situation is that it only takes 24 hours of silence for a kiddo to start to forget sound. With the amount if time that has already passed, Calvin has likely forgotten everything he learned and by the time his implant has been repaired, we will be starting at square one. He knew that, and I knew that, but I doubt his staff really gave a darn. 

   At any rate, we have some more investigating to do before we decide the next steps. Calvin will have another CT scan next week, and will have testing on his implant done by a rep from the Cochlear manufacturer to ensure that it isn't a hardware malfunction. This would require replacing the implant and would be a big deal. Let's pray that this isn't the case. In the mean time I am gathering as much of his medical history as I can from everyone who has ever treated him.

     I started this blog with the hopes of educating and helping other parents. If I have any advice to give at all, it is make frequent request for your children's medical records from everyone who has treated them. They're typically available 2-3 weeks after your kiddo was last seen. Put them in a binder and take it with you to every appointment. Also,  take notes at EVERY appointment. Sometimes little things turn into a big deal and being clear with your understanding is essential to helping the physician's determine the best treatment, and it saves time and possible repeat appointments. Ask for the business card of every Dr. and nurse who takes care of your kiddo. If you have a complaint, you'll have their information handy. More importantly, if you want to thank them or let them know they're appreciated, it's easy to remember who they are. 

    I'm not excited about repeating his surgery, and I'm disappointed that this has happened. It definitely feels like one step forward, one step backward. Just when we make progress in one area, we lose so much ground in another.  I understand that it's a mechanical device and that for every 100 units made, a certain percentage are going to fail. I would never wish it to happen to another kiddo, but I definitely wish it wasn't Calvin. I miss seeing him smile when turn on his implant and say  ,"Good Morning Calvin!"  

       I don't feel like his interruption to sound has interrupted our love or our bond though. My signing has improved a lot from relying on it solely to communicate with him, and he will finally watch and pay attention when I'm trying to sign more than a few words to him. His signing has skyrocketed and he is still the same profoundly happy baby he's always been, hearing or not. For that I'm grateful. 

Implants and Golden Nets

I can't believe that it has already been more than a month since Calvin's surgery! I have wanted to write about it but we've been so busy since we got home from Utah. I was crazy enough to start a new job the week after his surgery. I have no idea what I was thinking! I am back into commercial design at Babcock Design Group. I love my job, and the people I work with but holy smokes! I tried to hit the ground running and I think it hit me back twice as hard. I keep telling myself to just keep running and that someday I will get caught up, be on time, look like I know what I'm doing, have a clean house, get all the bills paid, be patient, be strong, have all the answers that my family thinks I should know, and finally feel like everything I do is enough for someone somewhere. Until then, I try cherish every minute of the madness I create.

On to Calvin's surgery. I honestly didn't know what to expect so I was surprised by some things, but overall relieved that it went so well.

Reading his favorite book, Brown Bear.

We left for Utah on Thursday, April 4th. Calvin was in a good mood and so happy the entire drive there. He's not usually a fussy baby, but he does have his frustration threshold ( like all kids) and confining him will certainly get him there a lot faster. Car seats, high chairs, strollers, they're all his enemies. But not then! He was happy and easygoing.  Aaron and Carli were a little anxious to see us leave, and Carli cried more than once as we were getting ready to go. It really is touching to see how much they love their baby brother. It does a lot to ease my fears that I have failed as a mom. At least they're capable of love, so I've done something right, right?

On the drive down I wasn't much of a travelling companion for Rob. I had my nose stuck on my phone. I couldn't help it for all of the sweet and touching messages, e-mails, texts and facebook posts we were getting. I would finally get all of them responded to, and 10 more would pop up. I wish I had better words for how this made me feel, but it really was very humbling. I don't think that Rob and I are extraordinary people. We try to do the best that we can with what we have, but on that Thursday, we received such an amazing outpouring of love and respect that it truly made a difference in the way we approached the surgery. I wasn't scared. I wasn't even nervous. I was excited.

Poor Rob had been so sick for a week before the surgery. I was afraid he wasn't going to be able to go. Although he got well enough to drive down with me, he was still so sick, and that lasted until he was able to hold Calvin after the operation. Sometimes I don't pay enough attention to his feelings and give him credit for what he's going through. I forget that I've had a bunch of kids before Calvin, and that I have experienced parental anxiety enough to have built up some tolerance for it. If not a tolerance, at least a familiarity with it. This is Rob's first child, and everything is new. Add to that a child with special needs, and it's bound to wreak havoc on any decent father's nerves.

We got into Salt Lake about an hour and a half before Calvin's Pre- Op appointment so I finally dragged Rob around Temple Square. I think the idea of the Temple is still a little overwhelming to him, but he seemed to appreciate the beauty of the space. It was such a gorgeous, sunny and warm day. The flowers and trees had started to bloom and I'm grateful that we were able to steal away a moment of peace and respite before we went on with the rest of our little journey.


Our pre- op appointment went really well. Calvin is kind of like a rock star everywhere we go. He's such a happy baby and he has this little vibe about him that people seem so drawn to.  He's kind of the remarkable patient for most of his physicians. His diagnosis is rare, and at one point an implant didn't even seem possible. I am grateful for the insight that one Audiologist shared with us that led us to Dr. Shelton and his team. Knowing what I know now, I understand why the process to get to this point was such a difficult one with so many ups and downs. Having the right Doctor who was willing to educate us and encourage us when things seemed difficult has made such a big difference.

Calvin and his first crush.. He even
signed "Flirt" and "you" to her! No joke! 

After the post op appointment we met my cousin at her house for dinner and let Calvin play with her adorable little boy Henry. I think they completely wore each other out and I am so glad he had such a fun time. I wish I had taken a picture of it! My cousin Amberlie and I were very close friends growing up, and I am so glad that we've been able to reconnect as adults. I had my first three kids a little early in life and I never imagined we would have little ones close to the same age. She's a wonderful mother though and I am glad to have her as a friend during my round 2 of parenting little ones.

Surgery Day! Check in at Primary Children's 

A little nervous now... 

 The next morning we drove to the hospital in pouring rain. We checked in at Primary Children's Hospital on time and were kind of rushed through the check in and pre- op part. I wasn't very happy about that. I was about to turn my baby over to have a major operation and I was being rushed through it like it was no big deal. Things slowed down though when we got to our meeting with the anesthesiologist. I have a genetic disorder that's pretty rare and dangerous for anesthesia. We had no idea if Calvin has it too, and didn't want to find out the hard way. So, while the anesthesiologist was on the phone trying to determine what blood work to do to find out if he too has the same deficiency, I got to watch him play. He was completely oblivious as to what was going on, and not even uneasy at that point. He was happy and laughing and for a few minutes I started to doubt what we were doing. He is communicating just fine with us. He signs like crazy and he's happy. He could care less that he hears or not. There wasn't anyone pressuring us into going through with the surgery. I really had to take a step back mentally and remind myself of why we had chosen this path. It wasn't to "fix" anything that was fundamentally wrong with Calvin. It wasn't because I saw him as less than whole, or unintelligent. It wasn't even because I was so vain or desperate that my life wouldn't be complete if he didn't hear my voice. Frankly, he has an advantage that no one else in my family does. I'm not always nice. I'm not always a good mom. I make mistakes and say things I regret. Calvin doesn't have to hear me at my worst and I am forever grateful that there is one person in this world who is immune- in at least some way - to how much I can fail those around me sometimes. Deafness isn't always a curse. There are a million and one beautiful sounds that I am sad that he can't hear. But there are just as many awful sounds that I am glad he has never had to process.

So content to try to figure it out. 

             I didn't want to upset Calvin though so I tried my hardest to internalize all that I was feeling. I was so confused and frustrated that I felt that way. We had spent almost a year making this decision and now I was unsure, and second guessing myself. I looked down at him playing and started to cry. Not because I was scared but because of how much I love my son. I don't know how or why it came to be that four of the most beautiful souls on earth were trusted to someone like me. It is something I will never understand. I remembered then that we made the choices we made for Calvin out of love. That's not anything I have to regret or feel sorry for.







All things considered we held it together pretty well until we handed him to the anesthesiologist. As soon as he took Calvin around the corner, Rob and I held onto each other. It was a rough moment. I don't mean to be overly dramatic, but that was a pivotal moment. I was handing my baby over to someone and asking them to very carefully and skillfully change something completely fundamental about him. Going through this last year and the surgery wasn't just a big event that happened in our lives that we can glaze over and skip the details. It was made up of hundreds of gut wrenching snippets of time. Some moved so slow it seemed like the earth stopped turning, some flew by so fast we didn't even have time  catch our breath before the warning they brought blew up in our faces. One moment to the next things are so completely different and never able to go back to the way they were. I know we aren't the only family who has endured this. I am all too aware of how small our problems are in the grand scheme of things. But when you're suddenly faced with a situation that reveals all your weaknesses and fears all at once, it leaves you feeling so vulnerable and alone.
        The surgery lasted two and a half hours. It was hard to let my mind settle, and I could tell that Rob was exhausted. Being sick for over a week had really taken a toll on him. We sat down in the surgical waiting room and he quickly fell asleep. He's been so strong for us this whole time. He has been my rock when I needed one. He's Calvin's best friend and an amazing Dad. My kids love him like he's been with them always and my heart hurt when I saw the lines on his face.
       Before I knew it, Dr. Shelton was suddenly sitting in front of us.He snuck in so quickly and quietly that it startled me when I realized he was looking at Rob and I with a very sympathetic, bemused look on his face. We must have looked pretty haggard by that point.  I woke Rob up and he turned on his hearing aids. I signaled Dr. Shelton to wait until I heard the familiar little chime that let me know his "ears" were working and he could hear now.
     We sat forward in our chairs and listened very intently to Him describe the surgery. It went fairly well for the most part. There were a few small complications but they were able to be compensated for. Before surgery, we had known that they anatomy of Calvin's cochlea was abnormal. As it happens, when Dr. Shelton opened an entry into his cochlea, spinal fluid gushed from the opening. A part of Calvin's ear that goes from his Cochlea to his brain had been enlarged. We knew this from the scans that had been done. What we didn't know is that it was filled with fluid. Dr. Shelton was able to close this off with some muscle and Calvin should do well. He has a slightly higher risk of contracting meningitis now, so we'll have to monitor fevers closely. Then Dr. Shelton explained to us that because of the deformity of his inner ear, he was only able to get 20 out of the 22 electrodes into his cochlea. This will still give him an adequate level of sound, and we were cautioned not to worry too much.
    In the final part of Dr. Shelton's conversation with us, he let us know that he had tested the implant in the operating room and that there was a good response from the nerve, indicating that he should be able to hear fairly well with it. I was so relieved. It was such a feeling of mixed emotions! This finally meant we were on the downhill side of our little journey and I felt like I had climbed Mount Everest. Then I remembered Calvin was still in the OR and that he was having his ear literally sewn back onto his head and I was instantly unsettled again.
     Thirty minutes later the recovery nurse called to let us know he was starting to wake up. I couldn't sprint down that hallway fast enough! I heard my poor little guy crying before I even went through the heavy double doors into the recovery suite. It was a little bit of a labyrinth to try to find which crib was his. There were a lot of little ones in that surgery suite that day though, and my heart went out to every one of them that I passed. I finally found his corner of the suite and had to brace myself when I saw him. He was in a lot of pain and completely out of it. He was frantic and screaming and it took a lot just to try to find a way to hold him.

 I have never intended to use this blog to bad mouth or criticize anyone, but I was a little frustrated with the recovery room nurse. As a parent, I expect all medical personnel who work in a very specialized part of health care to have at least a functional knowledge of what they are doing for their patients. However, when I was struggling to comfort him she looked at me and said, "well, he's probably hearing things he's never heard before and it's scaring him." I just stared at her like her head had fallen off. It completely dumbfounded me how she who was here to treat children that are recipients of cochlear implants was completely oblivious to how they even work. I took a deep breath and did my best to educate her. I informed her that it's not possible for him to hear with the implant alone, and that he will have to have the receiver and processor attached, programmed and turned on before he can have access to sound. It was an eye opening moment when I realized that the misconceptions society has about cochlear implants are so pervasive that not even a registered nurse is immune to them.

At any rate, the rest of the evening was somewhat rough on my little guy. It took a lot from both Rob and I to get him comfortable. He cried a lot and didn't want to be held, but didn't want to be left alone either. My parents who were in town for a reunion came in to see him, and he was ok with Grandma holding him, briefly. After that he went right back to me and tried to settle in again.

A little later that evening he was feeling well enough to play around a little and sign to Rob that he was hungry and " I love you." 

I LOVE this picture of them signing to each other. The little foot on his Daddy's Tummy is something he does almost every morning when he's laying in bed with us.

Hugs from Dad make it all better

Grandma tucking her little man into bed and checking on him

This is such a sad little picture. He looks so sad and angry at me. 

He forgave me though and we snuggled from 9 pm until 6 am

After we were finally able to get Calvin's pain and nausea managed a little better, he crashed, and so did I. It had been a long, long day and I was grateful for the sleep. He was able to sleep through the night and didn't wake up even one time. 

The next morning I would have thought it a miracle if I didn't see it myself, but aside from the incision, and swelling, you would never have known he had surgery the day before. I have been told from the beginning of this process that the recovery time was nothing at all, but I was very skeptical. I just didn't believe that it would be that easy for him to feel well so soon. To me, it's a testament to how strong this little man is. He has hit some pretty big bumps in his short little life, and at every turn he has handled it so much better than I have.

After we left the hospital we headed to my Aunt's house for a little R'N'R, and then further south to meet up with my Mom and Dad at my Aunt and Uncle's house in Mapleton. Before we met up with them though, I had to introduce Rob to one of my favorite childhood memories... Glade's Drive-In in Spanish Fork Utah. The food now isn't as good as I remember it being when I was a kid, but the building is still exactly the same as it was then, and not much different than when my mom worked there in High School... way back in 1969.

 While we were at my Aunt's house I was still in total disbelief that Calvin had gone through that kind of surgery just the day before. He played with Grandma and Grandpa, Aunt Glenda's Dogs, my cousin and her girls... we even went to feed her Sheep and Horses. He was maybe slightly more irritable towards the end of the day than usual, but that's it. I am amazed at how resilient he is and how happy of a little boy he is growing to be. Despite everything he has been through, he is still just genuinely happy. I wonder if someday he will ever know how much he inspired, uplifted and kept me moving

The next day we drove back to Idaho with a very tired, sweet baby boy.  It wasn't without worry and stress though. When the Doctor took the bandages off  the morning after Calvin's surgery his ear wasn't in the same place as it was before. Inspite of my surprise, I had hoped that after some swelling went down it would have looked better. I wanted to believe I was overreacting  so we hit the road and watched him closely. As the trip went on though, I wasn't noticing any improvement. I messaged a few of my friends who have children with implants and they said they did not have that experience. I finally made Rob pull over and I called the Surgeon's office. I got in contact with the resident on call and he said that it was actually very normal and that over time as the swelling reduced his ear would move back to it's normal location. Even though I was mentally reassured by our conversation, I was still sick to my stomach. We had handed over a physically perfect child and had caused this to be done to him. I cried so hard out of  fear that he would never look normal again. Worse yet, we still had 30 days to go until we would know how much he would be able to hear with his implant or know if what we had just done was worth what we were now going through.

 We had not been warned at all that something like this could happen. It was a question I had never even thought to ask. I know quite a few people with implants now, and had never noticed that their ears were misplaced so it wasn't something that even occurred to me. I have tried to stay on an even keel and positive note throughout everything Calvin has gone through, but I can honestly say I felt bitter, angry and more than anything... guilty and ashamed. I thought of all the deaf individuals who have fought against cochlear implants and I finally understood why. I felt like I had harmed my baby by trying to give him the best opportunity possible,  at the moment, he was worse off now than he was before. I was so angry with myself my stomach was sour and I was sick. I could hardly even think straight.

It's times like this that I am incredibly grateful for Rob. I don't know how he did it, but even though he had many of the same feelings, he very calmly talked me through this. Eventually I was able to relax enough for him to drive and we were on the road again. Through talking with him, I realized that we had already passed the point of no return. Whether his ear ever went back to the right place or not, we could not undo what had been done, so we had better learn to settle our hearts with the decision that we made. I have always said that I hope that at some point, later in life, Calvin will be ok with the decisions we made for him when he was too young to make them. I want what's best for my son and although what I feel in my heart is best for him might be totally contradictory to what someone else would say is best for him. However, I know my baby and I know myself. I know what we as a family are capable of accomplishing and enduring. And just like earlier in the OR waiting room, I had to remind myself that what we did, we did out of love.

 I do believe that Calvin could have a completely wonderful, rich and full life without ever hearing a sound. I do believe that I could "get over myself and rise to the occasion" and effectively parent and advocate for Calvin. But, I am not the only parent he has. He has a wonderful Father, who is also deaf. It may only have been recently that he has finally come to terms with his hearing loss, but he is still deaf. This wasn't the case of two hearing parents who were afraid of raising a deaf baby. This was a careful decision with so many ups and downs that I can't even count them anymore. Rob knows better than I what it is like to be excluded from conversations, or to be ignored, made fun of, or thought of as stupid only because he couldn't hear. He knows what it is like to work for years just to be able to say the word "deaf" instead of "death".  He had the right to want and to provide something better for his son, and I support him because I love them both more than I can ever express.

We both know that an implant isn't a golden net that's going to catch Calvin and keep him safe from anyone's ignorance or cruelty. As a mother, I wish more than anything I could weave such a thing that would keep all my children safe and innocent forever. Every time their heart breaks, so does mine. But keeping them safe forever isn't a realistic plan.  We all have to endure pain to grow and as far as growing pains go, this was  the most  we had ever endured.  I looked back at my sleeping little boy and as I stopped crying, a beautiful thought occurred to me. Calvin has a net that has already been woven for him. It's not made of gold, and it certainly isn't impenetrable, but it is still strong. It's made of love, and hope and courage, and maybe that's enough. Maybe that's enough to catch him when I'm not strong enough to. Maybe it's the foundation that we've made for him to stand on later. Maybe I've given him enough courage that he'll be able to be strong even when I'm afraid. And maybe, for right now, I can fold up that love, and hope and courage and lay my head on it like a pillow when my heart has hurt too much for too long and I just need a rest.

Hearing, but not as you know it.

Tonight as I was getting ready to head to Utah tomorrow for Calvin's surgery, I wanted to make sure that I gave the kids every opportunity to ask any questions they had and understand what is going to happen to their brother. As I was trying to give them as much information as I could- for Aaron it's never enough by the way- I searched a few web sources that I had and came across this video:

I think it's a beautiful illustration of the kind of success I hope for Calvin. I
think it helps me put some of my fears to rest, but it also guides me to more realistic expectations.

I saw this posted on a Facebook page a few weeks ago, and it made my heart sink.Before I had Calvin, I had been exposed to Deaf Culture as a child, but never really knew or understood the complexity of their culture, their lives or their struggle. I want to say, I get the struggle now. I know how hard the deaf community has worked to find acceptance, to be advocates for themselves, to gain education, accommodations and rights. It has not been an easy battle for them. Sometimes, those of us who hear do not recognize how ignorant we are to the lives of those who cannot hear. So knowing that now, I understand why this post was made. In light of all that they have fought for, of course it seems like a cop out to just stick an implant in your kids ear, give them artificial hearing and spare them the fight, the frustration, isolation and loneliness that can come with hearing loss.

That being said, it doesn't mean that I was OK with the message. When I first saw this I was LIVID! I thought, "Just as it's wrong for hearing individuals to assume that every deaf person can and should get a cochlear implant or that their lives would be better if their deafness could be fixed, it's so wrong for every deaf person to assume that hearing parents are lazy, and that we don't care about how much our children can communicate and interact with their environment". Then I remembered a study I had been told about, and understood this even better. I was told by my audiologist that 75% of deaf children have parents who do not sign to them. I won't judge these parents, and neither should anyone else. I don't know what their circumstances are, how much hearing their kids have with other assistive devices, or how much access they have to intervention and education; but this video so beautifully demonstrated why it is IMPERATIVE that children continue to learn sign language after a cochlear implant.

Sound that is processed from an implant is artificial sound. It is not natural sound amplified like it is through a hearing aid. It is a beautiful invention, but it is not perfect. 22 electrodes cannot possibly recreate the clarity or range that 30,000 tiny hairs can produce. After seeing how much sound this beautiful girl was still missing out on, I know that Calvin will still need another form of communication.  I still feel like we are making the right choice for Calvin. But now I see it with even more clarity. It's not one choice, it's choices. An implant with spoken language vs.American Sign Language is not mutually exclusive. It doesn't have to be one or the other, and more importantly... it shouldn't be!

Pins and Needles and Implants

If anyone had told me what a roller coaster ride this last year would have been, I would have politely declined my turn and gotten some cotton candy instead. I think I've done a pretty good job of whining about how hard it's been, so I'll skip that part, but OH MY! We are down to 4 days to go until Calvin's implant surgery. I remember thinking, oh wow! He's 6 months old, we only have 6 months to prepare ourselves. Oh wow! He's 8 months, we only have 4 months to prepare ourselves. And now, here we are. And for everything we've done, I still don't feel ready.

I can't even process how I'm feeling right now. If I just think about things in a very superficial, matter of fact way, I can manage my day and do what needs to be done. But as we get closer and closer to Friday, this is getting much harder to do. If I start thinking about things like: what will it be like to see him with his head shaved? or...how will he feel when it's done and he wakes up? or... how long is it really going to take? and...what will the Dr. say to us before the surgery? And WORST of all..... what if something goes wrong? What if what we're doing is wrong?? ..... I start to cry. I apologize now for the little melt down I had in Jo-Ann Fabrics tonight. It was humiliating, and I'm sorry to anyone who saw it.

I wish I could fast forward this part and skip ahead to when he's a happy, naughty, precocious 18 moth old little boy and his hair has gown back and the scars have healed and his implant works and he still signs like a mad man. I wish I didn't have to see him in pain. I wish I didn't have to remind myself every day of why we're asking him to go through this. I wish I could have more faith in myself that it's the right thing to do. I don't want to miss him growing up, so I wouldn't wish to skip that part.... but I wish I could look into the future and see a bright, happy young man who is pleased with his life and has no regrets for the choices we made for him. I wish I could see me, satisfied with the work that I've done, and know that I did all I could do for my baby.

On the flip side of all my nerves, I get almost giddy when I think of the possibilities that are going to open up for him now. On May 3rd, when his implant is actually turned on... my baby will hear my voice say I love you for the first time. . He'll hear his Daddy's dumb jokes and baseball stats and that he loves his little boy more than his own life. He's going to be able to hear all the sounds that his obnoxious toys make. He'll hear music, and the sound of life as it happens in a family. He'll hear his big sister sing along to every song she hears, even if she doesn't know the words. He'll hear his brothers beg her to stop and tease her unmercifully. He'll hear the stories, poems, essays and songs that she's written for him, about him and because of him.  He'll hear himself cry, and laugh. I hope so much that he will recognize what a beautiful sound that laugh is... and just keep laughing.

And I guess if I can't see into the future, I can look to the past and be grateful for how far we've come and how much we've learned.  I can see the support and wealth of knowledge that has been available to us. Best of all, I can see how much love we have been blessed with.

 I can also look around and be more aware of and grateful for what is happening right now. While I don't know how many friends Calvin will have in the future, I am grateful for the ones he does have now. More importantly, I'm grateful for our friends who haven't shied away from introducing their kids to him, and have started teaching their kids a few basic signs so that he can communicate with them.

I may not know what Calvin's health will be like in the future, but I can be grateful that it seems to be stable for now. There are a few hiccups that have come along lately, but we are figuring them out and dealing with them better than anything that has been thrown at us before.

I don't know what technology will be available in the future, but I'm grateful for what we do have access to now. It might not be 100% perfect, there are risks, it's not a cure all, and it doesn't mean that we won't have to work hard; but at least there is something that can offer more than 'hearing aids can't help and he will live without sound forever'. I don't know if my older kids will feel like they were left out and didn't get enough attention, but for right now I am exceptionally pleased with how much they love their little brother and would give anything to make him happy.

Maybe my fear and anxiety is unwarranted.Maybe I'm just a neurotic mom. Maybe not. Probably. I don't know. I've never gone through this before. I think its normal to be apprehensive and afraid and excited and thrilled and nervous all at the same time. It's probably not normal to fall apart in a fabric store though, so perhaps I should take my Dr.'s advice; which was to "Get a grip and rise to the occasion". Yes, he really did say that to me once. And it was exactly what I needed to hear then , and every time I've remembered it.... like tonight.

Cutest Baby Ever !

Earlier this month  my mom Diane, nominated our little man for the Post Registers cutest baby of 2012 contest. I thought it was so incredibly sweet of her. I didn't realize how fast last month went, but the voting time is almost over. I don't know what the prize is, nor do I care. I was so deeply touched that my mom would do this for my little guy.

 I would be a liar if I said that things have always been super smooth between my mom and I, especially when it comes to my kids. There have been some pretty rough times between us in the past. But, when Calvin was born, and I'm not sure how or why, he softened both of our hearts. I can count my mom as a friend now, and I am grateful for how much she loves this baby. When I was pregnant with Calvin my friend Sue told me, "This baby is going to change lives." I had no idea how true that statement would be and I am so, so grateful for the many ways that he has. 

So, if you have time, take a minute and vote for our little guy. It would mean the world to one very special and proud Grandma. 

p=V&c=82227&s=31643145&i=1http://postregister.upickem.net/engine/Details.aspx?p=V&c=82227&s=31643145&i=1

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. 

    

We're off to see the Wizard...

Tonight I am kicking myself for not having kept the blog very current last year. Now that I actually have some exciting and wonderful things happening, I find I'm having to pretty much write a novel to get caught up! So, I've decided to do a very quick timeline style of events just to get to where we need to be and for current events to make sense. For the rest of you who might need some drama before you go to bed, I can e-mail you the longer, more gut wrenching version at your request. I am certain I will not get many requests for those.

So, here we go:
May 2012
We FINALLY get a return phone call from Calvin's Ear Nose and Throat specialists office regarding the CT scan and MRI and the news isn't good. We found out that Calvin has THREE types of hearing loss. 1) His vestibular aqueducts are enlarged. 2) His Cochleas are deformed 3) His auditory nerve in his left ear is not present and the nerve in his right ear is deformed. Any one of these alone would be enough to make it very hard for someone to hear. But because he has all three, Calvin hears NOTHING. World wide, there are only a handful of people born every year with a complete absence of sound. Calvin is one of them.

In light of hearing this, I wanted to make sure that I understood where we were and what our options were. Because Calvin's audiologist (AuD) was out on maternity leave, I scheduled an appointment with his ENT so that she could clarify.

August 2012
We FINALLY got in to see his ENT (apparently it takes a lot of patience to be the parent of a deaf child).We went to the appointment expecting the Doctor to confirm what the nurse had told us on the phone; that due to the condition of Calvin's cochleas, auditory nerves and vestibular aqueducts,  he was not a candidate for a cochlear implant. Instead, the Doctor seemed very confident that she could place an implant in Calvin's right cochlea, the one ear that does have an auditory nerve, albeit damaged. When I asked how successful the implant would be, she stated, "Oh very. I have no idea if it will give him any hearing though." Those were her exact words. Seriously? How can that be called a success??

Many sleepless and frustrating nights were had at that point. What would you do as a parent? put your kid through a very challenging and expensive surgery on a "Maybe he'll hear, I don't know"? By September I was thinking, no. Let's not do a cochlear implant. Rob didn't feel the same though, and it was a struggle between the two of us. For every measure that I wanted my son to hear though, I didn't want it to come at the expense of so much else.

 I know that to some of you, that may seem unfathomable. To pass up the opportunity to help your child hear sounds downright neglectful. However, the more I have been exposed to the deaf culture, the more comfortable I am with Calvin's deafness. It is so much a part of him now, that I can't imagine him any other way. His personality is strong, and smart and funny. He's quick witted and very bright. Just tonight I caught him playing in his crib instead of sleeping. When I signed, "What are you doing?" to him, he signed back, "Playing" then, "Dancing" and he started to dance.  I would miss all of that if it went away. If he suddenly didn't need to sign, we would lose the level of interaction we have with him. I know there are still some who will judge me for saying I am fine without a cochlear implant for my son. But let me ask you this, is there any difference between him HEARING me say "I love you" and him SEEING me say I love you? In our family now, there is not any difference at all. I know that the ability to hear would serve Calvin well later in life. More job opportunities, better communication skills, better relationships etc. But what if all of that can be accomplished even if he never hears a word?

Moving on to October 2012:
We ran another 5k with the Olive Osmond Hearing Fund (I use the term ran very loosely here. Rob and I took a leisurely stroll and chatted while everyone else scooted around us.) and I was fortunate to be able to meet another AuD. She had a suggestion of who we could take Calvin to for a second opinion. He's a Neurotologist at the University of  Utah, and difficult to get into, but  worth the trip. As she was talking, very suddenly this weight lifted and I felt immediately better about the idea of an Implant. I realized that maybe it's not the idea of an implant that is giving me so much confusion and fear, but the circumstances surrounding it here. Rob felt the same way, so we started the process of getting a referral to go see Dr. Shelton.

And that leads me to tonight. I can't sleep, I have so many questions.. and I really do kind of feel like Dorothy going off to see the Wizard in Oz. I have so much that I am looking for from him. I am hoping above all, that he can give us piece of mind one way or another.

I started this blog to be as educational as I could, and I have not done well by that at all. Please keep in mind that I am not an ENT, Neurotologist, or Audiologist. I am just a mom who has tried my best to understand where we are headed. just like many other moments in my life, I was prepared to have to understand the cochlear implant process long before I needed it. From the first moment we were told of Calvin's hearing loss, I remembered an episode of Scientific American Frontiers that I had watched several years ago, before I ever even met Rob. I found it again and have watched it several times. This is perhaps one of the clearest explanations of the process that I could find, it even shows the actual surgery. Please, if you have the time, watch it. It's about 20 minutes long.

I wish more than anything that every child who gets a cochlear implant could have the kind of success that this little girl has, or like this little guy: 

However, that's not always the case. After making the appointment to see Dr. Shelton, we've been able to meet with our original audiologist. Calvin has been re-tested to confirm that he has no benefit of hearing from his hearing aids 

This test is called the ABR 

This is us in a soundproof booth, I have earplugs in because it would be loud enough to damage my hearing otherwise. 

Just as she has been in the past our Audiologist, Kerry, was very supportive and sensitive to what we are going through, but firm in her dedication to helping us do the best that we can for Calvin. After we chatted for a bit, she very gently said, I want to prepare you for hearing the worst when you go to Utah. I have always been concerned about the anatomy of his cochleas, and I want you to understand that it might not be possible for Calvin to receive an implant. 

A year ago, I would have been even more devastated than I already was to have heard this. However, this time, it didn't even phase me. I listened to her explain what she meant and I understood the complexity of his case so clearly. I know now that even with an implant, it's likely that I will always have to sign with Calvin. Maybe this is what his first Doctor was trying to tell me, and either I failed to understand or she failed to explain. Or maybe it's what I needed to push me to be proud of Calvin's deafness. 

While they are a miraculous medical advancement, cochlear implants aren't a cure all. Not everyone who is deaf can have one, and not everyone receives benefit from them. So while I am hopeful for our appointment, I am going with my heart and my eyes open. I am asking for nothing more than a final say in what is right for Calvin... but even as I write these words I realize that no one can give us that. That is something that Rob and I have to prayerfully decide together. I can ask for clarity, but the courage, heart and intellect to move forward can only come from us.  

Please, if you have a moment, say a little prayer that Rob and I will be guided to do what's right for Calvin. 

Let's Mambo!

The more involved in the deaf culture we become, the more I LOVE IT! I love the Deaf and Hard of Hearing people we have gotten to know. I have never known a more sincere, honest and unpretentious group before. I can only hope that Calvin grows to be as dynamic, successful, happy and talented as the people we've had the pleasure to meet. Who knows what he or any of my kids will do with their beautiful lives..... maybe music? Yep.

This is Sean Forbes, he's a deaf performer, lyricist, and MUSICIAN. That's right, a deaf guy that writes music. He can't hear treble clef notes, but can hear base notes. I love this song- and video. It features the beautiful and talented deaf actress Marlee Matlin. I turn it up as loud as I can and let Calvin lay on the speakers so he can feel the beat, It's adorable!  I'll have to post a video of his "dancing" soon. 

Enjoy!