[mito] dreading today's appointment

[Guest guest]

Hi all,

I just am venting and it's a bit of a small vent in the scheme of

things, but I am absolutely dreading today's appointment with Asher's

physiatrist (the doctor who keeps track of Asher's muscle strength and

stamina). She is incredibly blunt (i.e. when she first heard that Asher

was diagnosed with mito, she told me " well, you should have a good 4 or

5 years with him before it all goes downhill " and she doesn't know tons

about mito) but she tells me the truth about his muscles and muscle

strength and the exercises he needs or doesn't need to keep or gain

strength and what types of orthotics, etc.. So, I know I will hear what

I already know and don't want to hear. That he has lost muscle mass and

strength and endurance this winter. Of course he has, he's been

hospitalized for a major illness, had a surgery, and three outpatient

procedures.

I'm also dreading that she will tell us we need to start physical

therapy again. It is so hard to fit everything in and try to provide a

sort of normal family life for my other son! Plus, the cost.

So, in the grand scheme of things and in terms of what many of you out

there are dealing with, this is small today. But I just don't want her

to confirm what my husband and I are already seeing.... that Asher has

lost ground again. And I always wonder, will Asher gain that back? Or

is it just another step down on this downward trend?

I'm thinking of all of you with the sick kids right now and the kids in

crisis.

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

[Guest guest]

Anne,

Just wnted you to know that you all are in my prayers today!AReckling@... wrote:

Hi all,I just am venting and it's a bit of a small vent in the scheme of things, but I am absolutely dreading today's appointment with Asher's physiatrist (the doctor who keeps track of Asher's muscle strength and stamina). She is incredibly blunt (i.e. when she first heard that Asher was diagnosed with mito, she told me "well, you should have a good 4 or 5 years with him before it all goes downhill" and she doesn't know tons about mito) but she tells me the truth about his muscles and muscle strength and the exercises he needs or doesn't need to keep or gain strength and what types of orthotics, etc.. So, I know I will hear what I already know and don't want to hear. That he has lost muscle mass and strength and endurance this winter. Of course he has, he's been hospitalized for a major illness, had a surgery, and three

outpatient procedures.I'm also dreading that she will tell us we need to start physical therapy again. It is so hard to fit everything in and try to provide a sort of normal family life for my other son! Plus, the cost.So, in the grand scheme of things and in terms of what many of you out there are dealing with, this is small today. But I just don't want her to confirm what my husband and I are already seeing.... that Asher has lost ground again. And I always wonder, will Asher gain that back? Or is it just another step down on this downward trend?I'm thinking of all of you with the sick kids right now and the kids in crisis.Anne R - mom to Asher (complex III defect and partial Complex I defect)Please contact mito-owner with any problems or questions. __________________________________________________