Kim [myopathy] Ethan's Tball game

[Guest guest]

Kim,

I'd love to see the pictures but it didn't get attached to the email I

got from you - if you can try - I'd love to see Ethan.

Anne R

-----Original KMessage-----

To: Mito

Sent: Mon, 25 Apr 2005 02:48:46 -0700 (PDT)

Subject: Deb// [myopathy] Ethan's Tball game

LOL,,,somedays I look at him and think " Does he really have red hair

? " I love it,,but I wish it was more red,,I can't believe you could

actually tell that it is red. He gets it from my father in law and my

Dad. My Dad had black hair,,but a red mustache ! Crazy,huh?

I have thought about a PT eval. I was thinking about asking the ped

that today. I know they usually take a while to get in,,so it isn't an

immediate fix,,but I can at least try. Plus,,maybe they will have a

cancellation,or something. I wonder about orthotics. His foot is not

only turned in,and he is walking on the side of it,,but his toes are

curled under also. I don't know,,,I guess it will remain a mystery for

a few more days

Happy Birthday to Bliss ! I hope y'all were able to enjoy it. I'm not

sure where you live,or what the weather is like,,but maybe you were

able to get out and enjoy the day

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__________________________________________________

[Guest guest]

Anne,

Here is the attachment,,if that doesn't work,then here is a link to my picture trail account.http://www.picturetrail.com/gallery/view?p=6 & uid=2523945 & Hey,,BTW,,I have been looking for an update on Asher,on his caringbridge site,,and haven't seen one in a few days. I assume no news is good news ?

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__________________________________________________

[Guest guest]

Hi Kim,

I got the pictures - he is a cutie! I do love that red hair (I have

reddish hair too so I'm partial!)

Asher is doing okay for Asher. His poop tube is working and he had a

fun weekend. It's always a weird feeling when I try to figure out how

to answer " how is Asher doing? " because some parts are doing great and

others are not so great (i.e. fatigue, totally tube fed, tube that

helps him poop but he has to sit on the potty for an hour, etc.). But,

for Asher, it was a good weekend and we are just adjusting to the " new

normal " .

Anne R

Re: Kim [myopathy] Ethan's Tball game

Anne,

Here is the attachment,,if that doesn't work,then here is a link to

my picture trail account.

http://www.picturetrail.com/gallery/view?p=6 & uid=2523945 & Hey,,BTW,,I

have been looking for an update on Asher,on his caringbridge site,,and

haven't seen one in a few days. I assume no news is good news ?

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__________________________________________________

[Guest guest]

Anne,

LOL,,on the red hair comment. I just never really think of him as a red head ! But looking at the pictures,,you can really see the red.

I am so glad to hear that the poop tube is working,,but sorry to hear of all the other problems. I didn't realize that he is tube fed. Does he miss eating food,,or has he always been tube fed ? I am so sorry to hear that. I had no idea.

I just got Ethan's Miralax,for his constipation. I am going to wait till after the MRI to start him on it,though, Since I have no idea how it will affect him,,I decided to wait. He has been complaining more and more of his tummy hurting. Several times a day. I don't really know what to think of what all is going on with him. 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__________________________________________________