Re: Dylan update

[Guest guest]

Wow Cindy- sounds like an angel has promptly appeared in your life and with

good timing ! I used a walker for a while myself to get around after the

surgeries and they really are quite helpful- just couldnt figure out a way to

carry my coffee and cell phone at the same time- so found a huge shirt with

bigggggggg pockets and put the cell in there and got a cup with a lid lol- when

I was going through PT in the past- I grew jealous at the doctors office of a

woman that had one on wheels and a stand to boot! She had crocheting on the

shelf of it and just rolled from room to room. My walker is now folded up and

in the closet but will never regret the much needed help it gave me.

Woohoooooo you have help- this is great!

I no longer go to PT, he was actually causing me more harm than good- due to

not understanding EDS...... and do have a time with steps so mostly avoid them

but have figured out a way to get up and down them if need be. I seldom go

where there are any though- its quite painful for me .

Good to hear the migraine is gone! Wish you the best of luck looking for a

primary..... Beings I am behind in email - you may have already found one?

Michigan isn't the easiest place to find one.......

Which medicine did you decide was making Dylan lose weight?

One thing that I am lucky about for house being accessible for someone in my

condition is that we had just remodeled so floors are all level- well - on the

main floor anyhow- and its spacious enough to get walkers, canes, wheelchairs,

amigos- what have you through- and my parents lovingly supplied a deck with a

ramp on it for me- so I am definitely well equipped now for all that- I also

have to use a shower stool in the shower - standing for too long is very

painful....... Again, wish you both the best of luck for all that you are coming

into and keeping you and Dylan in my prayers!

P.S. My boys are the same way- gotta love that brotherly love-

Many Hugs and Blessings,

Love - TJ

A few things have been happening. We now have a case worker at the insurance.

She has put Dylan is a high risk crisis plan. She said she is there to help me

with what ever issues come up. I don't know why she contacted me, but I'm glad

she did. She will call every to weeks and I can call or email her anytime I need

help or don't know what to do next. I HAVE HELP! PT can to the house yesterday

and wants Dylan to have a walker in the house. His danger of falling is great.

He will be back to teach Dylan exercises to do in the hot tub and in bed. Also

will be teaching him another way to go up stairs and to walk. He had said that

the way Dylan is walking right now, his back will be going next. We are still

looking for a primary Dr. I have two more to call tomorrow. Migraine is finally

gone! He has lost 20 lbs in a month. Mike helped me figure out which medicine

is probably the problem. Every thing Dylan eats tastes awful. So even though he

is hungry, he only eats a few bits. The dogs are his best friends right now <G>.

They are going to get fat. All Dylan's paperwork is at the NIH, we are waiting

to hear if they will see him. Oh, and this case worker said she'll see that

Dylan gets to go out of state to see an EDS specialist. I'm still trying to

figure out which one might be best. OT will be here tomorrow to assess the

house, to see what can be done to make it more functional for him. My 18 year

old graduates from HS tomorrow and is moving out this weekend. Dylan is very

happy about that. Brotherly love huh? And the best thing of all is,... Mike is

coming in 8 days! Thanks all for being there to help me find the way through

this mess. Cindy C.

[Guest guest]

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just couldnt figure out a way to carry my coffee and cell phone at

the same time- so found a huge shirt with bigggggggg pockets and put

the cell in there and got a cup with a lid

Another handy way to do stuff like this is to get a decent photo-

journalist style vest with lots and lots of pockets. I have used

one for years now. Actually, I have used more than one because I

use them so much that I tend to wear them out in about 12-15

months. The one I am using now has around 15 pockets, including

hand-warmer pockets.

They are outstanding for travel, particularly in today's environment

with long security lines. I can take everything out of my pants or

shirt pockets, as well as my watch and rings, zip them all up in the

vest pockets and run everything thru the xray without having to deal

with those little plastic trays. They are also excellent for other

aspects of security as well since they greatly reduce any potential

for having your pocket picked in crowds.

I also highly recommend them for women, particularly anybody with

mobility issues. To begin with, they are much easier on your body

than a heavy purse that is dragging you down on one side bccause you

can more uniformly distribute the weight with far less strain on

your back and shoulders. And I think I have already covered the

issue of reducing any possibility of getting your purse snatched,

either from off a shoulder or from off a wheelchair.