Re: Doggie Bootcamp

[Guest guest]

Hi Annmarie,

We returned home very late Wednesday night. Then had to return to work Thrusday

and Friday (and start to clean up the fall out at home after being gone for two

weeks). I was matched with a beautiful Golden Retriever named Skittles. He is

very sweet and seems to be catching on to the new routine quickly. I hope to

update our caringbridge page next week and add a picture of the newest addition

to our family. The girls and their dogs joined me for Mother's Day. Lu said we

were doing well so she allowed us to go out for dinner with all of the dogs

( V's family too). We had four service dogs under the table to the

amazement of the other guests that watched us leave after dinner. All of the

dogs are related through their grandmother, Sky. Fortunately, they each have

different jobs to do and have maintained a good work ethic with the addition.

One unexpected benefit for me...Skittles was taught to get my inhaler when

needed. That has been a very necessary and

helpful skill for me this week.

Next week I will resume the medical challenges for my girls. I'm trying to

enjoy a small part of this weekend and have a Starlight Foundation Family Board

meeting tomorrow.

Hope your doc has some treatment ideas for you. Where is HUP?

peetie peetie@...> wrote: Hi Joanne,

Are you back from " Doggie Boot Camp " yet? I hope you had a good time there.

Sorry to hear that the girls are having problems with their endocrine systems.

I also have labs that have been high for years and still are. I am going to see

an endo at HUP. Plus my DEXA Scan came back as very bad. I know that is too far

for you to travel. Plus I don't even know if he is good or not yet. I will let

you know after my appt. in June.

It is so hard to find doctors that will treat us, once they hear Mitochondrial

disease, they want nothing to do with us.

Best of luck!!

Hugs,

Ann-Marie

Re: Dynalab??

1) They ordered several thousand dollars worth of labs. 2) The doc had

NEVER seen a " surviving " young adult with mito before and wasn't keen on trying

any treatment to begin with. 3) Both girls have definite clinical

signs/symptoms that there are problems in this oprgan system, but now they

really don't want to treat. I have no idea what or how to proceed.

MitomomX3@... wrote:

why not have them repeated then at the same lab that they came bcak normal

at?

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris