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Thursday, May 3, 2012

Will we ever discover the unknown?

Yesterday, we had our typical follow up appointment with Hayden's neurologist. Hayden was pretty excited to see Dr. Beena (as he calls her). He wanted to show her his Phillies baseball hat and his baby sister. Julia got to come along for the ride yesterday. I was worried how I would handle two kids, a double stroller and a walker. I am giving myself a pat on the back because I did it without any flaws.

Hayden was his true Hayden self. He had to stop to talk to everyone. I literally mean every body. Patients, parents, cleaning staff, nurses, receptionist, and of course the doctors. I need to allow enough time for my social bug to greet everyone in order to make the appointments on time. We arrived on time thankfully, and surprisingly did not have a long wait. Thank goodness for small miracles!  Our appointment was pretty typical we talked about how Hayden is doing and he is doing fabulous. He is walking more, talking more, trying new things, and being a crazy four year old boy. The only thing he is still struggling with is balance and walking independent. However, that does not stop my sweet boy in his mobility because he is everywhere. It makes me happy every time I see him move, my heart just melts. Well, after all the good things the doctor discusses his upcoming MRI. I know we are looking for a tethered spinal cord however, I was not expecting to get the shock of the "M" word. Yes, you guessed it they are "considering" Mitochondrial disease. This scares me actually it frightens me. I begin asking what can cause it, is it genetic, will my baby girl be impacted. All these questions which they cannot answer yet. We are also going to repeat his CPK because it was slightly elevated with a value of 211 vs a normal range of 160. However, his genetic doctor said that is normal for children with hypotonia she told me children with muscular dystrophy would render values in the 1000's. The interesting piece of blood work is a check of his vitamin E levels. I had no idea this could impact balance, but it does.

Now, I sit and wait for our MRI appointment this month. I now worry even more that we are facing potentially the "M" word. I am trying to remain optimistic, I am trying to think to myself everything else has turned up negative this will too.  I know there has got to be something that is impacting my baby boy in a way to cause tremendous trouble with  his balance. One day maybe all the smart scientist and doctors will discover what exactly is causing these delays in my sweet boy and other children facing the "unknown" reason for their delays. I just want my baby boy to live a long healthy and happy life, I want him to be able to accomplish all of his dreams, I want him to not suffer or be in pain, I want him to have friends and enjoy playing sports that he loves so much. More than anything I want him to continue to be Hayden because Hayden is a true blessing, a true miracle, a true inspiration, and the very center of my world.

1 comment:

  1. One day at a time, Renee. I can't even recall all of the terrible things that I heard Trisomy 9 "could" mean to Julia's future growth and development when we got her diagnosis. I love "The Message" translation of Matthew 6:34: "Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." God is doing miracles in your little man!!