I am having a terrible time sleeping. After reading about the TWO 13 year old boys with Duchenne's who passed away already this year, I am just heart broken! I cant imagine what the parents must be feeling. Although you know that your child is expected to have a limited life expectancy, you sure don't expect it to be 13! I guess it hit pretty hard because we have a soon to be 14 year old. Although he is doing well over all, little things seem to be happening and sneaking up on him.
Brandon has been doing pretty well for quite some time. It seems though that in the last few weeks, he has been facing new issues in dealing with this disease. One issue is basically total loss of control of his bowels. Another is the ability to hold himself up to a sitting position. And yet another issue is a decrease in his vision.
Brandon has always had excellent eyes-cat eyes almost! He was the one who could actually find that needle in a haystack. For the first time ever, his routine eye exam showed him with vision 20/40. I know that isn't horrible, but for it to be Brandon is just troubling to me. Needless to say, we will be making an appointment to see an eye doctor and to see if he will need some glasses soon.
Brandon is taking the fact that he basically cannot control his bowels fairly well. He has blamed it on his food,sweets, and even a virus. If it was only and issue occasionally, I would say, sure honey. It will get better and pass. Instead, I had to talk to him about how part of what holds your poop in is a muscle, and that ITS POSSIBLE that his Duchenne's is making it hard for him to do that. I told him that I hoped that it was the other stuff causing it, but that it might not be. He has had issues with making it to the toilet for a while, but accidents were very sporadic. It is almost an every day occurrence now.
Although I have another blog that I write to faithfully on myspace, I feel much more comfortable about talking about Brandon on here. I guess because I know that most of you are dealing (or have dealt with) the same things. Most of my friends and family who read my other blog have no clue on what its really like to deal with this issue. Because of that, writing about this stuff in that blog just isn't therapeutic to me. I dont know how often I will write on this blog, but I know that most who read this will understand.
I think I have written enough to possibly get some sleep now!

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Comment by Ana on April 7, 2009 at 8:52pm
Hi MommaToo.
I left a message on your home page also, but after reading that post I couldnt help but reply. Austin is 10, so, we're not dealing w/alot of that quite yet. It does make me feel much better at least knowing what to expect in our future though. I don't know what I'd do if all of you whom have dealt w/this longer didnt post!!!
Thank you
Comment by cheryl cliff on January 10, 2009 at 1:27pm
Hi MommaToo
My heart goes out to you. I understand how scary it is watching and not really knowing if the physical changes are due to something simple like a flu or DMD. God forbid it is the latter. I have been at this DMD stuff for only 15 months and already have heard about 8 deaths, 2 in the UK and the rest here in USA. That amounts to aprox. 1 every other month and those are only the ones I have heard of, certainly there have been more, I don't seek this information-it finds me. I wish I had special words for you or some way to make it easier to deal with what you are going thru. My son is 10 and I expect we might possibly be where you are all too soon.

My heart goes out to you and Brandon,
and to the families of those who passed.
cheryl

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