When Max was first diagnosed, I scoured the internet for anything about this new world we'd been shipped off to without a good roadmap. I didn't find much. What I did find, scared me, and made me terribly sad.
It is always in the forefront of my mind when I'm writing a blogpost on Max's page, to keep it truthful, but positive. It's not a matter of sugar coating our lives, but I don't ever want someone to google infantile spasms, or methylmalonic acidemia + homocysteinuria, and come to this page and it be anything but an honest view of what life with a child who has these conditions is like. And that life is a very happy life.
That being said, there are times that we're quiet here. Maybe it's because we're up to our necks in sleepless nights. Maybe it's because even after 8.5 years, there are still moments of sadness, or realization rather, that this life is hard! That's where we are right now.
Max has had a condition called chorea for his entire life. Maybe it's because of the neurological side of his diagnosis, maybe it's because of the metabolic disease side of diagnosis. Whichever it is, he gets this shaky, jerky, writhing motion going on the right side of his body that he can't control. He gets so very frustrated by it, and really there isn't much he or we can do to stop it.
In the past, it's been a one or two day occurrence, then he would be back to normal. So, we haven't really been aggressive in treating it. Why add another medicine, when it bothers him only a couple of days a year?
The problem we're seeing now is, he's in a cycle that isn't stopping. He has not slept well since the beginning of June. He has not slept, and without the sleep, the chorea has picked up. To stop the chorea, we have to give him heavy duty medicine that we on hand for emergency seizures. That medicine knocks him smooth out! So, he comes off of a night of not sleeping, and gets zapped with drugs that knock him out on his best day, and we're only seeing Max's smiling face a couple times a week these days. It seems we're always either treating the chorea, or watching him sleep off the drugs, or not sleeping into the early mornings. When he is "awake", he's his normal self. And it seems he doesn't want to go back to sleep...so he stays up all night!
I was able to catch him on an "on day" a couple of weeks ago to ask him with his talker if he was hurting, or in pain anywhere. I wanted to know if he could tell me what was wrong. What did our sweet boy say? "I'm good, I'm happy."
It's definitely tiring. And It's hard to know what to do. We are talking with his doctors, and of course they will help us find the right answers. But, for now, it is hard to be in this place of not being able to help. And not feeling entirely positive all the time.
And being the eternal optimist in this house...hopefully our next update we will have our happy go lucky Max back with us! But for now, he needs the rest, so it may be a bit quiet for a while.
And, George got home just in time to help take care of Max.
4 comments:
praying that you get some answers and sending lots of hugs
I do hope you get some answers and that Max (and all of you!) rest comfortably. The photo of you and Max is so sweet and gentle -- worlds are in that picture!
You are wonderful and brave to be optimistic and positive nearly all the time, but I do think that people visiting are often comforted, too, by reality -- knowing that they are not alone with any of their feelings --
Thank you Heidi and Elizabeth. I know you both understand so much!
Elizabeth, that photo of me holding Max is a common one lately. He's getting so big, and sometimes I can't believe I can still hold him. When Steve put him on my lap I said...he is the weight of the world!
Keeping it real, good for you! Hope this damn chorea shake out, for good.
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