ongoing saga

[Guest guest]

Hi all

I have been busy working of late and I haven't been up to speed on the computer

so I have looked at all my emails and I want to say thank you to all those who

have responded to my never ending questions and also I appreciate the kind words

but I sure don't feel heroic or inspirational. It is all of you who are giving

me the inspiration and the will to keep going. All of you who live with the

excruciating pain and many medical problems are the ones who are heroes. In the

grand scheme of things we are such a small group, I wish there were some way to

let the world know about this dreaded syndrome. I have been sharing this with

everyone I know with the hope of educating more & more people. AS many of you

know I have been requesting our son's medical files. His pediatrician was

astounded to learn of Dannys diagnosis of VEDS. He according to her had never

sent up any red flags. Now we are fairly sure that his hospital visit of 2 and a

half years ago of internal bleeding was directly related to VEDS. Also it is

interesting to note that Danny's autopsy showed their was a bleed around the

adrenal gland as well as the tear in the aorta. I want to read all of his files.

I do wonder how it could be missed. My husband thinks I like to torture myself

.....I don;t but I would just like to know everything. He spoke with the ER doc

who looked after Danny the week before he died and she told him that she has

thought about us often and actually is stepping down from Emergency director

because of the stress of the job. Hmmmm!! Also Danny's pediatrician thanked me

for letting her know about the diagnosis and for educating her somewhat. We have

finally told our older son and he is such a great kid. He is ready to have the

blood work done and of course that will be another worry. The genetecist is to

get back to us regarding the how longs etc. We are leaving for Florida in 2

weeks and while it will be very sad to go on a " holiday " without our Danny I

feel we do need a change of scenery. I know is really looking forward to

it. I just wanted to repeat again what a wonderful group of people you all are

and I am so glad to be a part of this " family " .

Wishing everyone lots of love, laughter & pain-free days.

Betty

[Guest guest]

Hi Betty,

I hope you have a good holiday and the weather is good to you. I'll

have my fingers crossed for your older son and his bloodwork. I'm

glad that at least the pediatrician and the ER dr. were a bit

compassionate too...

Big (((HUGS))). I'm thinking of you...

-Rhea