PARTY in here for CHRISTYDRAKE & son!!!

Hey everyone, I figured I'd throw a little virtual party here in honor of Christydrake and her son!  Christydrake has been through H*** and high water to get help for her son with dysautonomia, and many of us have followed along as she met with disappointment after frustration after disappointment in trying to get help for her son.  Well, they finally got the help (and respect) they deserve at their recent visit to Cleveland, and I think it's time to CELEBRATE!!!!!

Christydrake, in honor of your persistence in getting help for your son, you totally deserve a cake!  Luckily, this is a virtual party, because I'm a terrible baker.  :-p

[evo123]

Thank you for the invite and I RSVP with pleasure xxx

It is awful how we have to fight for tests, treatment, help and validation and I take my hat off to you christydrake for pushing on.  As a mother, and one with children with health issues, I totally understand your determination, frustration, anger and drive to get answers.  Well done to you and good luck for your son x  I wish you both well.

ENJOY your party xxxxxxxxxxx

[LivingInHope]

I'm so glad you were able to get somewhere where you can receive help regarding your son's condition and for the grace given you to press on when the journey seemed long.

[CHRISTYDRAKE]

Thanks for the party!  When we were in Cleveland we were just grateful for how everyone there was so nice and pleasant and helpful and understanding.  It gave us renewed hope!

It's amazing how when I tell a dr. in St Louis that my son has autonomic dysfunction and they look at you with a blank look.  In Cleveland, even the anastecialogist(?) knew what it was.  When we told him my son has autonomic dysfunction, he immediately turned up his IV and said "Oh, well he is going to need to be very hydrated."  Then he explained what could happen during the colonoscopy due to the auto dysfunction.  

His heart rate dropped down to the 20's during that test, but they were ready for it.  They stopped until it went back up.

So, yes we have renewed hope, and I will be writing a letter to a couple of dr's here in St Louis, letting them know where they failed by completely blowing us off.

[supineallthetime]

Congrats to a most solid parent!  Your son is lucky to have you.

[laurab2818]

That's great that things went so well in Cleveland.  It must be a relief to be on the right track. It's not easy to keep fighting.  You have done a great job!

[karinosa]

Oh Wow!!! that is great news!  Definitely give yourself a pat in the back for not giving up and knowing that what you knew as a mother was what was really happening and not just accepting what the other Dr's were saying.  Keep us posted!

Karin

[Weney3777]

How wonderful to find that understanding from doctors. I know it can be frustrating, but you kept persuing the answers. Awesome!

[AireScottie]

You must feel like a huge weight has been lifted!  Hooray!  Now let's hope they find a good treatment regimen and he can go back to being a boy.

[halbashes]

Awesome!  I'm happy you've found understanding doctors at Cleveland Clinic!  Definitely a reason to party!  :)