Tuesday, January 23, 2018

Your Child's Development Isn't Due to a Genetic Issue...

"Your Child's Development Isn't Due to a Genetic Issue..." the Genetic Counselor said aloud to my Wife and me yesterday. Our immediate response was confusion. And honestly, I'm still confused. For me, everything has a "what and why", ask anyone I've worked for or anyone who's worked for me - cause and effect. For Mary, her outlook is much easier to comprehend than mine, her question becomes - "Is he this way just because he is this way?"

I'll allow myself to backtrack some. To catch up if you don't know our story. Or to fill in blanks if you only know part of the story..

Rhett Solomon was born in May of 2015 at a whopping 8 pounds 15 ounces. He was (and still is) the most beautiful child I've ever seen. Blue eyes, blonde hair, curious and alert. His "new baby" smell still lingers if I close my eyes and think hard enough. Noah and Levi both were excited and in awe of their brother. Rhett was absolutely perfect. His delivery and first weeks at home were amazing. His being alive made a difference in everyones lives. As he grew he didn't do the things our older children had done. When he was placed in his car seat he would scream, yelp, and cry. His hands, feet and head would pour sweat to the extent of washing his carseat so frequently we could put it all back together in the dark - because life continues to move forward, we can't stop what we're doing because he hates the car right?

But, Rhett didn't hate the car. And Rhett never rolled over. A month went by and Rhett again, didn't roll over and while other children his age were sitting up, Rhett wouldn't and he couldn't. The car seat continued to be a problem, we began staying at home and missing out on life. The doctors said children do things in their own time, don't compare him to your others. So we didn't. We waited, not much longer but just a bit. Then one day, while crying in the doctors office we were offered help.

Fast forward a bit.. Rhett completes a series of MRI's, MRA's, extensive blood testing, testing sent to the Mayo Clinic, travel to and from destinations close and far meeting Neurologists, specialists, different hospitals, more nurses all the while he continued to scream in the car. And one day we had an answer..

Rhett is missing part of Chromosome 17. Chromosome Deletion. Much being unknown about his particular strand missing. "Therapy is key." "We need time to see how he will respond."

This "diagnosis" allowed us to get Penny. Our lifesaver. Penny is Rhett's Occupational Therapist. She has been in our lives as his Therapist for two years now. She has done everything from feed Rhett, change diapers, introduce him to grass (I know it seems silly but really), and so much more. He walks, and talks, and crawls, and the list goes on and on because of Penny. She is our constant. She wears many hats and until recently she would do the job of all the therapists we should've had working with us from the beginning. Without her, Rhett would be another statistic.

Because of Penny, we eventually learned where to go next. Rhett was given a chance to meet a doctor many miles away who, through her sphere of influence, helped us get two additional therapists assigned to help Rhett - Brooke (Rhett's Physical Therapist) and Amber (Rhett's Speech Therapist). Now we're busy, three therapies a week! And life begins to change very fast for Rhett. This all has happened within the last six months, and Rhett no longer can cling to Daddy and Mommy - he begins to build rapport with others. His trust in strangers, acquaintances and friends begins to build. He no longer fears being away from us. Rhett has also made a friend in Miss Christie, his gym partner. She watches out for Rhett each day, Monday through Friday for an hour to two hours. She has instilled organization and "cleanup" in Rhett. He loves each of these women in the most adorable way.

And although I've shortened the sequences and left out more than enough important data we get to our trip to Jackson yesterday. Deflated is the emotion I feel. For two years I've accepted that Rhett is delayed due to a Chromosome Deletion that should've never been reported to us - the agency that completed Rhett's initial genetic evaluation didn't have enough information available and the amount of his deletion is so insignificant that we now have lost time in determining the true cause of our son's condition. And although we have made significant progress through therapy, part of me still worries that we haven't done enough. Had we not gotten the wrong information in the beginning perhaps we would have a more definitive answer. Confusion has taken over.

The one thing we all agree on at this moment is that Rhett is Delayed with muscle development, motor functions, and things of that nature. Another thing we can agree upon is Rhett is brilliant. His mind is sharp. He isn't impaired mentally. If anything, he has mastered manipulation - he has everyone wrapped around his fingers.

I think frustrated is a simple word for how I feel today. And I could go on and on but we now must refocus our energy on finding an answer. So I'll ask each of you who read my letter today to please send good vibes and prayers to my children, my wife, and our family as we begin our next adventure. Our life is blessed. We work hard, our children are loved, and Mary and I rely on each other to make the best of each day even in the unknown that lies ahead. Maybe he is the way he is just because he is the way he is, that's hopeful thinking right?

- Jacob

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