Friday, June 19, 2009

Rain, Dr C, and 79th Birthday Parties. YES all in ONE! :)


So many days of rain...days and days and days...WED was sunny and other than that...a good solid 2 weeks...when will the rain go?? ehh!!!

I Blog today full of thoughts...well not that many...An ADDer can only hold so many and actually have the ability to organize them!
I read so much about this Dr Chugani(sp?) from Michigan..NOt only am I intrigued by him but I want his opinion on Madison! Its a long journey from CT to get there...and would I really get the answers i seek??
Madison is so delayed....she has come so far since...oh even a few months ago...but things are just not progressing as I would hope they would..Like should I just give up my hope of madie walking some day?? NO WAY I refuse!! Is all this genetic related? HAS TO BE!or not?? I am full mutation of a disorder called Fragile X syndrome...my younger brother HAS the disorder he is mentally retarded.....I have a 50/50 of giving it to my child...madie was compleatly negative of the gene...BUT does it stem from that at all?? We kinda ruled it out.. Is there a good reason for her poor muscle tone? Is all this simply because she had IS when she was little?? Are these jerks she is having the RETURN of IS? Does IS return?? Why does she not use her hands well? Sensory issue? Or is this all some horrible neurological disorder that no one has ever heard of??
Ok mama...deeeeep breaths.....

My Big reason for being so intrigued by Dr Chugani(have a spelled it right?) is I feel like he is aggressive...he wants to KNOW what is wrong...he gets the tests that other doctors kinda blow off....keep me posted Reagans mom...!!!
I wonder as well if maybe just a trip to New York or Philly or Boston will be the answers that I seek...I don't even know where to begin to look!
I tell ya, if Dr C. can help lil Reagan I will be brought to tears.! This little girl goes thru soooo much every day! I also very much know the feeling when you don't see seizures anymore and your child wakes up...becomes happier, sleeps better, vocalizes more...its the best! MAdie has been trying so hard to crawl! I call her a frog!
OH gosh and lil Sophie! Madie was never a surgery candidate but this lil girl... AMAZING! ...so strong! I have no idea how I would handle...I think I give more Kudos to her parents! Sophies got it all down! Shes a pro!
I just want someone who will go ahead and run this test and that test...try to LEARN about madie and figure out things...not just a new seizure drug...Seizures are an issue NO doubt...but there are so many things steming from it...
Her feeding issues, her sensory issues, her lack of physical strength, her lack of cognitive function, her weight issues...lack of gaining!( she was 90th percentile her first year of life..before all these drugs and seizures), her noises...are they typical of a certain disorder? I love them but they are by no means trying to say "mama or da da" Is all this BECASUE she has seizures?? or ALSO something else??
SO many questions...I just kinda get assigned a new therapist for all of them....PT, OT, Speech/feeding, GI.....
I am just wanting that extra Mile for Madie...and I want ONE person who can figure some things out..let me know that I am not wasting my time going to all these appointments and spending my 40 bucks for speech and GI..etc...Someone who will not just assign me to an new therapist...or a new drug...
And the drugs...Whew...get me goin on the drugs....I blame the drugs for alot of things...I never understand why the doctors have to have our kids on such cocktails...ever think about their growth and development being effected from the drugs alone???
My thoughts are feeling disorganized I am I jumping back and forth...typing frantically before I loose my words....
For now, I am going to do my research and try to find someone...what do you think folks? Told Hubby one of my mamas has to have an e-mail for Dr Chugani....eh??
Hook me up!
Today we celebrate Madies great grandmas 79 birthday with the only way we all love to celebrate with a big dinner! :) Hubby will be picking up flowers and we will get madie insanely cute in some outfit...and head over :)! Bless her. she is something else..if only she would stop accessorizing her home with QVC buys...LOL
Hugs mamas!!
:)

3 comments:

JSmith5780 said...

Been raining non-stop here in Albany, too! I amso sick of rain!

hchugani@pet.wayne.edu

good luck!

Holli said...

Yep, I would start with an email to Dr. Chugani. He's extremely quick in responding. Me, personally, I couldn't rest until I got his opinion. We didn't get exactly what we were seeking...but he didn't cut us off either. We will keep an eye on Austin and his EEGs, and maybe get to go back to Detroit sometime. I'm not giving up! If nothing else, he will at least give you a starting point. I can't remember where I read it, but he has seen and treated more different types of obscure epilepy disorders in his years of practice than many different doctors combined. I had numbers on it, but I forget. It's impressive.

Anyway, it sounds like you're headed in the right direction (even if it's not Detroit). You're not giving up and you're thinking outside the box (as far everything being linked to something specific). I may sound like an afterschool special, but it starts with you! You're the one that can give the doctors the info that they need to understand Madie. Just don't give up!

Hang in there! ((((hugs))))

FXSmom said...

You may want to question the type of test used to test your daughter. My daughter also have fragile x. The first test they ran on her came up negative. They then ran another test, which i later learned was the appropriate test, and she was positive. Now at 10.5 she is doing amazing but I'm glad we did a different test. We were able to gear her therapy and stuff towards her dx. :)