Erik Quinn: The Heart of a Family: Going to Rehab

Wednesday, January 30, 2008

Going to Rehab

I scheduled Erik with a pediatric rehabilitation specialist in April. This appointment materialized after his private physical therapist reported his body was much more rigid these days and his pediatrician, although I have a lot of faith in her, doesn't seem to know jack about WS. However, Erik's pediatrician was more than happy to refer us. When the paperwork went through, an unusually pleasant woman named Audrey called the house to set up an appointment. We were not able to get in until April, but I explained to Audrey that since we are unable to see a WS specialist on a regular basis (we seem to be living in the wrong region for that kind of thing), I would like someone to give Erik's poor old body a once over just for his mother's sake. No hurry. It's hard to know what I am supposed to be doing with little to no guidance from medical professionals in this region, but I'm following my gut. It was my gut that led me to this diagnosis in the first place almost two years ago.

I already feel better.

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Blogger Julie said...

Your doing fine. Hope she can help you. Noah sees a child developemental pediatrician once a year but that is it. Sometimes I wonder if I am doing enough. We truly do know more than our pediatricians. I realized that the day Noah went in for an ear infection and he was asking me about williams because he thought he might have another patient.

6:30 PM  
Blogger Penny said...

Good luck. Always go with your gut

7:05 PM  
Blogger Kerry said...

Your gut is always right, that's for sure! It is exhausting to always be the one to make sure the information is correct. I am amazed at all you have to do out there. I know we are lucky to have all these resources out here... I wish you had the same :(

8:06 PM  
Blogger Laura said...

You're doing great! Even with all sorts of medical experts in my area, I still feel like I don't know what the heck I'm doing or if I'm doing enough!

3:29 AM  
Blogger Heather said...

Good! I'm glad you insisted on doing that. Hey, Always go with your gut. That is what led me to Caleb's DX too. Yeah, I did land on my tail bone, but I don't thing I cracked it. My back is pretty sore though,and I have a black mark the size of my hand on my right cheek . Thank goodness I have some cushion there! :) Thanks for asking! I'm fine.
Just to chime in about the wrong region for good care! Meeee toooo! They are just a bunch of hick doctors around here and have trouble diagnosing a cold.

3:58 AM  
Blogger Katie said...

Its hard to know if what we do is enough...
I hope she can be a help to you -
The only medical people i have spoken too that have even heard of WS were the Genetics Dept.
Your a great Mom Nancy, Eric is in safe hands :)

4:50 AM  
Blogger Tara said...

I'm so glad you are going with your gut. I finally decided to take Payton to a developmental pediatrician because I didn't feel like I was covering everything. We can't get in until July - but I feel better just knowing she'll be seen. So, I'm glad Erik has an appointment and I will be anxious to hear how it goes in April. I'm so happy mom's have "gut instincts" :)

6:33 AM  
Blogger LZ Blogger said...

Nancy - It has to be tough when you as the mom know more about Erik's WS than the medical community in your area. SCAREY! ~ jb///

2:50 PM  
Blogger Michelle said...

Sounds like a long wait, but I hope you get some answers from this appt!

7:18 PM  

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