Re: [myopathy] Ethan's Tball game

April 24, 2005

Hi Kim,

I'm glad you let us know how it went.... sounds like you have a truly

wonderful pediatrician. I thought of you a lot today. Asher had t-ball

too (he's 4) and my dh took him and I took my older son to register for

basketball. I think my dh was stunned when watching the difference

between Asher and the other kids his age. He says Asher moves in slow

motion like an old man. It's the fatigue of the disease, huh? I will

really be thinking of you on Wednesday. I think you might want to ask

the docs what will they think or do etc. if the MRI shows nothing. I

know that you will be relieved and should be, yet it also seems to me

that he still will have the weakness and the foot turned in -and

reading the posts about the MRI it sounds like it doesn't always tell

you things. So, just a thought. I will be thinking of you - try not to

get ahead of yourself (easier said than done!) and enjoy the moment

with each of your kids!

Anne R - mom to Asher (4, complex III defect and partial Complex I

defect)

Ethan's Tball game

Well,,we had Ethan's game . He is still walking with his foot turned

in,and kinda dragging it a little. His pediatrician was there,,and was

very observant. I saw him watching Ethan almost the entire game. He

even walked across the field twice to get a closer look. I just love

this man so much ! After the game he told me that it looks like Ethan

has hurt his foot,,and asked me,if I thought he had. He wanted to know

if he cries when I put his shoes on,,or anything like that. I told him

no,,that he is acting fine,,able to jump and play. He said that even if

he did hurt it,,that doesn't explain why he has been doing this off and

on,for about a month,or so. Or why his leg is all of a sudden weaker.

He thinks that we will know alot more after the MRI,on Weds. I am

hopeful that we will,,but I can't imagine getting any kind of good

news,from an MRI . I'm still very nervous,,and am constantly watching

him to see if anything new is going on. So far nothing new,,other than

he seems to be more tired,than usual. He was very cranky and ready for

bed by about 7:30 tonight.

That's about it,,,,thanks for the continued support. I don't know

what I would do without y'all !

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7

Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~

and Ethan 5 and 100 %

BOY__________________________________________________

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