Tuesday, March 15, 2016

Your Prescription is Ready and Moving Forward

Things are moving forward, like it or not. I remember this with my daughter Mimi. Months/years of not knowing what's going on. Then one day a big container arrives with Growth Hormone, as well as a nurse. And we were on our way.

The same thing is happening now. Max's Dr. worked with his insurance to cover CoQ10. I went to pick-up the tablets and was handed a hefty sack of bottles. This is 3 months of CoQ10. One 100mg tablet 3x day. For all we know this is all Max can can take to help him muscles from deteriorating so quickly. Until there is a "a cure."

Ironically, the CoQ10 is piled next to the growth hormone supplies. It's starting to look like a medicine cabinet in my kitchen cupboard.

We are also getting used to the wheelchair. I think I'll change the wheelchair's name from Carl to Andre'. Andre' helps my son not fall apart physically in a store...and he is happier when we are out. What a big, relief. We've also secured some epic parking spaces with the handicapped permit. Max says, "Seriously. I think this is the best parking space in the whole lot!"

We barely survived the Nerve Conduction study last week with repeat shocks. He was reduced to tears- 1.5 hours of shocks. In many locations of his arms and legs it looked like there was very little activity. I think that they had to keep amping the shock level because the normal ranges weren't making his nerves react. I was then reduced to tears. They called in the Dr. He was funny as always and said that he has enough to go on. We did a trial since then of a Myasthenia Gravis medicine to see if Max would have *some* restored strength- but it didn't work at all. This would be in case Max has some sort of congenital Myasthenic condition in addition to the MD.

We are now awaiting the 24 EEG which is coming up. I am overwhelmed as I know HE is getting overwhelmed. I think he is beginning to think this is incredible what they are doing to him. I feel in disbelief at times when I realize that he is only 10 years old. Did you know you can repeatedly shock a 10 year old for an hour and a half? Cut a muscle out of a 10 year olds leg? Load him up with 300mg of CoQ10 a day?

Here's Max last week at our homeschool Co-op. It's such a nice time that we spend with other homeschool friends. Max plays chess and does archery with a light bow with other boys. Mimi and her little pals have music class and we work on the Book Cooks program. Sometimes we all hang out and do a little seasonal something- like making these Easter Gardens. It is so awesome to be outside amongst nice company. When we drive back home we pass the Max's old elementary school. It's a Friday afternoon. We are usually tired and happy and content from having our nice afternoon. We are always so relieved that he's not spending his days exhausted and inside the school anymore. 

In other news, I am seriously cleaning my house. I've been at it for a week and it's starting to look much tidier. Between all the appts and the homeschooling and everything, something had to give.
I learned about the Konmari method and that is one sure way to let stuff go. I found it very helpful. It was also helpful that I know that Max has Muscular Dystrophy now...so much for certain toys and certain pants with too many buttons. Also, some of the playroom type clutter had to go because with MD you can't have things to trip over. Puts things into a different perspective.

That's it for now:)

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