Anne//Re: [myopathy] Ethan's Tball game

[Guest guest]

What a cutie! I love the RED hair!

Have you thought about getting a PT eval? I would probably do that and see if they can give you some stuff to do to try and strengthen the muscles. They are also better at diagnosing the specifics of these things b/c they get to spend more time with the kids than the drs do.

deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com

[Guest guest]

Anne,

I know exactly what your husband means about moving in slow motion. It is certainly an eye opener,,when you see them around "normal" kids,huh ? I think that is what my pediatrician meant,when he told me that when he saw Logan last year,in Tball,,,it was " very telling" . It was like his eyes were finally opened to what I have been saying all these years. Now,if he could just see him try to ride a bike,LOL .

Yes,,I am going to ask what we will do,,if the MRI and Xray are normal. I can't imagine what we will do next. He can't just keep walking like this,,and there has to be a reason for it. Today we went to my nieces soccer game,and Ethan,Logan and my youngest niece Madison were playing chase,and soccer,on an empty field,,and Ethan had a hard time keeping up with them,,and even sat down the majority of the time. He seems wiped out. And for him to have a hard time keeping up with Logan,,is really saying something. I'm going to get him outside on his bike and scooter tomorrow,,to see if he can still do them. He has been able to ride a big kid scooter (the kind with only 2 wheels) for a long time . If he can't balance on it anymore,,,then I'm afraid we really have a problem. I just wish I could be more like my husband,,and not worry ! I can't sleep,,I'm not eating much,,,I just want this to all be OVER !!

I've attatched a picture of Ethan,,just so you can have a visual ,when you pray for him,,it helps me,,to see the kiddos,that are needing prayer 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__________________________________________________