My Family

My Family

Monday, March 25, 2019

KMT2E and other alphabet soup


It's so much easier to write about medical conditions than mental health for me.  I don't know why, but it just is.  Maybe because it seems like such a taboo thing to talk about.  When I tell people I'm taking Cary Lynn to a doctor or specialist it's another day at the ranch.  It's accepted and understood. 

When I tell people I took Marvin to the Virginia Treatment Center for Children or his psychologist I get "the look".  And questions.  "Why does he need that, he's fine?"   "Marvin doesn't have problems, why are you taking him there?"  Or my favorite one tossed out by someone close last weekend, "If you take him to enough doctors of course they are going to find something wrong with him."

Let me set the record straight.  Marvin asked to go.  Things weren't feeling right to him and he was scared.  He did the right thing by coming to daddy and talking to him.  He lied on a recent eval done by our county because he wanted them to like him and not think he was weird.  Then he got upset he lied and talked to daddy.  Then he asked to go get some help and he told Dr. Al-Matteen about it and felt better.  He followed up with Dr.  Killgore and felt even better.  He's in good hands and has a team that cares about him.  And dog gone it, I'm proud of Marvin for saying that he needs the help.  That was brave.  

In other medical news our family has been joking around about Marvin's "genetic bloop" otherwise known as KMT2E.  Apparently Harvard, MIT, and the Swiss (the people, not the cheese) have been taking this a little more seriously and done some write ups.  I contacted Harvard and we are going to be in upcoming studies.  Nothing big and dynamic, just more paperwork.  What surprised me was that a lot of Marvin's health conditions tend to be common with people with the KMT2E.  It hasn't changed what we are doing but it's kind of nice to have some answers.  


I'm not going to lie, it's been kind of a stressful roller coaster ride over here.  But I feel like we are making some honest to goodness progress and Marvin is rocking it like a boss.  I feel like I'm in new uncharted territory but I've got a good team and to quote Dr. Killgore, "Marvin won't fall through the cracks. Not with you there to hold on tight."  So I'll keep holding on tight and we will pull through.  

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