Mikayla's Blueberry

Quick recap - Shiloh was born with bilateral sensorineural hearing loss. Originally Severe to Profound in Left ear and Profound in Right ear, recently after getting tubes in his ears we found out he lost all hearing in both ears. He was and is deaf. A week ago he had an MRI and Cat Scan of his head - normal procedure pre-cochlear implant to ensure there is no structural damage and that he is still a cochlear implant candidate.

What is a cochlear implant?

Simply, this device (and an enormous amount of work) could possibly give Shiloh the ability to learn to have normal speech and will possibly allow him to hear as you and I do. Michael and I have no problem raising our child deaf, we have no discrimination against that nor reservations to learning a new language (ASL is a second language). However, this is a hearing world and we want to give our child every opporutnity to thrive in this world as you and I do. We want him to hear us and we want him to be able to speak. Not discounting a person who does not have cochlear implants and lives a life without sound - they are just as capable as anyone else in this world. If my son's eyesight was less than 20/20 I would get him glasses. Granted, glasses are not as demanding as a cochlear implant - but think about it - what you see is what it is, hearing is more complicated - people's voices are different tones, frequencies, decibals. If Shiloh does not have success with his cochlear implants we will teach him sign language and we will learn it, our daughter will learn it, our future children will learn it - and we will gladly teach anyone who wants to communciate with him sign language. We will push him to be every bit of a person without hearing as we would a person with hearing. But for our family and our decision we are going forward with a cochlear implant. The surgery will be around his first birthday (september).

But before we can get to the cochlear implant...the results of the MRI and Cat Scans. Shiloh's ENT, Dr. Bauer, called to speak with us about the results. He spoke with us for nearly an hour and answered every question we could come up with in such an overwhelming moment. He informed us Shiloh has Mondini Dysplasia, or his cochlea's are malformed. The cochlea is a snail like structure that typically has 2.5 turns. Shiloh's cochlea's only have 1.5 turns. This makes a cochlear implant difficult as the amount of hearing depends on getting the implant all the way in. The success of a cochlear implant does not solely depend on the structure of the cochlea - there is so much therapy and rehabilitation involved.

There are other complications with the Mondini malformation - his vestibular aqueducts are enlarged as well (the balance system). This will delay his walking and crawling, but will not prohibit it. He is also more susceptible to Menigitis. READ: don't come near us without washing yo hands!

Michael and I are committed to the succes of Shiloh - in whatever form it comes in. That was our purpose for having children - to contribute something greater than ourselves to society. To not stop at just adding DNA to the world - but to give the world something that will make a difference. Our children will make an impact in this world and we're going to put forth every effort to ensure they do. Both Shiloh and Mikayla are our world and our loves. Every day we love eachother deeper because of our children (not to mention we already kind of liked eachother).

We have a roller coaster journey in front of us. And as I've said before 'man, the highs are high.' But as I learned last week, the lows are beyond lows I've felt before. Any pain or grief I have felt in my life compares nothing to the pain I feel over my child. When you become a mother and are handed your child for the first time you also receive a bottomless sack of guilt for every decision you've made or may make. I have days where I wake up running ready and confident "Lets do this!". And then there are days where I lay in bed a few moments longer to hold back the tears and hopefully start my day in a different mind set. Some days I pull out of that despair, and some days I get out of bed with a cloud looming over my head. Michael is a rock, my rock and the only person that could ever get me through those clouds. Mikayla is following in her father's footsteps and easily reminds me that everything is okay. Shiloh just smiles non-stop - like 'mom, come on, I'm cool'. You never want your child to feel any pain, grief, dissapointment, loss or sadness. And the thought of him feeling any of those things weighs down on my heart so heavy. But then I sneak in to his room at night and selfishly wake him up. He snuggles into my neck and coos to me softly, we sway slowly together and there is nothing else in the world but he and I.



And then I am reminded of how perfect and beautiful he is. He is so special and I wouldn't trade anything for him - not a thing.

Please keep good thoughts flowing to this little man.