Today's entry will be short on account of a rather deep cut I managed to give my poor finger while peeling/slicing the 50 odd pounds of apples we got from neighbors today (yay!!). It's amazing how much a sore finger impacts your life when you are a computer junkie...

Anyways - rough day here - the boys were up at 630am, rearing to go. They were up late last night - so all around not enough sleep. It's been HOT here (like 35C - 95F hot) and I think it has finally caught up to Brandon.

His movements are worse than I have seen in a LONG time in spite of an increase in his medication this week. For the medical junkies - his dystonia is quite bad - lots of posturing at night etc, which im sure is contributing to his being tired. During the day he is stubborn enough to insist on walking around the house, but falls constantly because of the ataxia which is also worse than it has been in a long time. He has hurt himself countless time this weekend.

It's days like this I just get mad at it all. It's not fair that he has to weigh walking against getting hurt. :(

We have been lucky so far - he is rubbery and hasn't broken anything yet. But we all know it's just a matter of time until he breaks a bone. It's impossible to tell him not to walk, but at the same time, we know it will hurt him.


Life just sucks sometimes.

To ice the cake we had to bow out of a bonfire tonight that both boys were REALLY looking forward to. Brandon is just too tired. By dinner time he was a whiny grumpy mess. So we called off the late night and went to bed early.

Again. ~sigh~

I was looking forward to just doing something 'normal' as a family. Staying up late on a summer night, hanging out around a bonfire with good friends, marshmallows and hot dogs. It's hard to admit when normal is out of reach.

Alright - pity party over.

At the end of the day nobody is actively sick, and I have a freezer full of apples, so I really can't complain.

On that note I believe I will go indulge in the last chocolate chip cookie.

Goodnight friends.


  1. This is the first time i even bother reading a blog and i'm glad i did...

    My older couson has a son who is about 6 months old and since his birth there has only been problems. It was recently discovered that he has mitocondrial disease 2 & 3 and it has been hard on his parents.

    I just love kids and I hate not having any certanty at all that he will be there tomorow or the day after that. It's sad but I guess it's life we can only pray and hope for the best.

    O ya. his name is Max.

    p.s goodluck to you all.


  2. Much love to you all. Come to my house sometime and we'll have a big huge bonfire, lots of marshmallows and s'mores. Hope the weather cools down and things settle for you.


    Nena and Reese

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