Recent E-Mail from Readers

Hi everyone,

I'm posting a couple of e-mails from readers recently if anyone is interested or has any advice/comments/information for them. Thanks:)

Blessings:)
Amy


Hello. I am Danielle Gandee of Temperance, MI and we are a Cerebral Palsy Family as well. I have a son, Braden, age 3 and he has CP, a spastic hemi/tri (both legs and his right arm). I believe we have a therapist in common...Ann Nagle?
We've been following your story and would love to chat more sometime. It is inspiring and refreshing to hear such a positive outcome.
Sincerely,
Danielle Gandee
sndgandee@aol.com


Hi Amy,

It is nice to know that the amount of therapy will slow down someday.

Congrats for all that you/he/your whole family have achieved!

If you don't mind sharing I would love to hear more details of your experiences. I would like to know your opinions of good therapists, doctors, treatments, surgeries, braces, activities, medications, clinical trials, HBOT, sports, youth groups, anything that impressed you as well as all the things that did not work.
And I would love to know how you started your blog. I want to start one of my own soon but am lost on how to begin.

Here's a little background on us...

My husband, Sam, and I are 34. We live in Temperance, MI with our four children. My oldest is 10 and the youngest is 2. We have 3 boys (Hunter, Braden and Kellen) and my 9 year old (Kerragan) is our only girl. My Braden is 3 1/2. After a difficult pregnancy he was born at almost 32 weeks and weighed 4 lbs 8 oz. He spent the first month in the NICU at St. V's. They told us there that he would have CP. He has been in therapy with Ann since he was 3 months. He is in therapy 3-7 times a week. He see a few different therapists such as Kelly PT, Michelle OT, and Deb ST at St. V's/Mercy Pediatric therapy on Sunforest Ct; Michelle for OT also see's him for Hippotherapy at Stepping Stones in Monroe, MI; sees Ann at Rehab Dynamics and she coordinates all his therapists for us as well; he sees Kim Benner PT and Carolyn Rhodes OT with the Monroe County ISD; in the fall he goes to U of M for a block of constraint therapy known as CHAMPS; and in the winter and spring he does the Special Needs Aquatic Program with Buffy through Total Rehab at Bedford's Francis Family YMCA, . His doctors are...McBride of Franklin Park Peds as Primary Care, Burke is Ortho, Julie Miller and Virgina Nelson as Ped rehab and physical medicine and Dr Cameron as neurologist. Sees Dan Cole or his AFO's and knee immobilizers. He has had 2 rounds of Botox in his Hamstrings and adductors, May of 09 and Nov 09.

Braden has been walking with his walker and pulling himself up to standing (but must hold on to something at all times)for a little over a year now. This past year he learned how to get into "W" sitting, learned to crawl on hands and knees (before this he would "commando crawl" as his primary mode of getting around), and learned to sit himself up from laying on his back in the last few weeks !!! :) In the house he crawls as his primary mode of movement.
He is very fun and playful and a real trooper, the hardest worker I could imagine. He seems to have typical intelligence and is very verbal. (we are working on annunciation and volume in Speech.)

Now that he is getting older I am trying to find the next level of activities-interactions.

I am looking to find other families with similar experiences that have similar attitudes as ours. Basically I feel...yes, it sucks to have CP (for the whole family as well as the one diagnosed with it) but this is the only life we've got so lets make the best of it and live it fully! We do not want pity from outsiders and will not tolerate self-pity. Instead, I welcome anyone to look at our experience and draw off our love, positive attitudes, and hard work. Braden will inspire the world!

I look forward to hearing from you and your family,

Sincerely,
Danielle


Amy,
I was so excited to see you blog. Ellen from Total Rehab at Toledo told me about your family. She has been saying for about the last year that my son Gabe reminds her so much of you Nick. With his disabilities and his demeanors even though he is only 4. When I finally looked at the BLOG I think they are twins in two different time frames.
Gabe has dipalegic CP of the lower extremities and profound hearing loss in his right ear in which he uses a hearing aid and is totally deaf in his left ear in which he has a cochlear implant.
Your family is such an inspiration to people. Thank you so much for all of the links that will help in the future.

ROBIN BLUM