Sarah's Page

Make an online donation to Rett Syndrome research in honor of Sarah!





Girl Power 2 Cure funds research through RSRT. Click to view the projects

 
Special Thanks for Sarah's 2017 Donors
Joel Heller Peter Tavernise
Amelia MacKenzie Betsy Mitsopoulos
Jamie Lanza Lisa Garmoe
Jana Wolff Duffy Perkins
Amy Batdorf Amy Olson
Kirstyn Roberts Katie Burns
Shay Leary Allison Dean
Jenine Drew Emily Schloff
Laura Luktefedder Gretchen Esbensen
Andrea Lyddane Erin Sammons
Catherine Walton Megan McNeilly
Tierney Davis Liz Hollick
Sara Culver Johanna Favole
Mary Beth Steele Shannon Steele
Lauren London Koralina McKenna
Kara Muzia Jennika Watson
James Tippins

Sarah's Story

Sarah is our Rett angel. She is in a wonderful special needs classroom within a regular elementary school. She loves being around other children, especially her big brother Pierce and little sister Gretchen ... she loves to giggle a lot when her little sister gets into trouble!

Rett Syndrome has robbed her of speech, as well as purposeful hand use and being able to walk, but she is getting stronger every day, She is a bright, vivacious, brave little girl who teaches us many things about what we normally take for granted. Her favorite things: a warm, breezy day, Scotty and Lulu music, water therapy, her friends at school, watching football with her papa!

Here is a list of resources that have helped our family!
HIGHLY recommended books:
The first two are a little pricey, but we refer to them all the time! Consider asking your library to purchase them if they are out of your budget.
"Handling the Young Child with Cerebral Palsy at Home"
by Nancy R. Finnie
This book really gave us a good look at how to incorporate "therapy" into daily routines and challenge our daughter to keep her strong and healthy.

"Motor Skills Acquisition in the First Year"
by Lois Bly
This book is AMAZING! Takes the entire first year - basically birth through walking- and breaks it down into every tiny thing that needs to happen before the next thing can happen. This really helped us see the path and get Sarah working on the in between stages....not just randomly focusing on major milestones like sitting or walking.

The Out-of-Sync Child
by Carol Kranowitz
Most special needs kids have some sensory issues. We figured out about Sarah one day when she was about 10 months old.....my son and sister were playing ping pong and I sat her up on the table....when the ball was bouncing and making a lot of racket, she was able to balance in sitting. As soon as the ball stopped, she fell over! Now we have music playing all the time, we have two swings in the house, and other neat things. It really works!

Our Favorite Equipment Recommendations:
Stroller/wheelchair: The Jazz EaSys by Thomashilfen (www.exomotion.com)
We researched this like crazy! This one is crash tested, so is safe for school bus transport. It folds. The seat is removable and can face in either direction...and is fully reclining! There is a rain/sun hood. A basket underneath...the works!

Augmentative Communication: AbleNet, Inc. Step Switch
Of all the little devices out there, this one gets the most use. You can record different messages on it in order....so each time Sarah hits it, it moves to the next message to say. She can "read" books to her friends, be "Simon" in Simon Says, rule "Red Light, Green Light!", etc.

Assistive Tech: RJ Cooper
RJ Cooper rocks! We use two of his software programs and will be getting more stuff as Sarah gets older.
Weighted blanket: Dream Catcher Blankets (www.weightedblanket.net) I wish I had gotten this years ago. It really helps when Sarah wakes up in the middle of the night...helps her fall back asleep.

Arm braces: www.armbraces.com
Funny, I looked and looked for arm braces small enough for Sarah and all along they were at armbraces.com! Easy web site to remember!

Entertainment/toys:
Videos:
Scotty and Lulu
Ralph's World - you have to get the old one "Say Hello", before he signed with Disney....sorry Ralph, but the stuff you did on your own was better!
Elmocize (I think Sarah likes that there is a girl with a wheelchair in it!)

Music:
Of course the GIRL POWER CD! These are all of Sarah's favorite songs!
Scotty and Lulu -Hands down, Sarah's favorite group and they have 5 albums!
Roger Day
Steve Songs (Steve does the BEST version "Bear Hunt" ever!!!)
Gwendolyn & the Goodtime Gang
Latin Playground
Jack Johnson (Curious George soundtrack)
Tom Salvatori - "Late Night Guitar" (she falls asleep to this every night!)

Toys:
Light up piano
Ball popper
Foosball -Foosball is a great therapy item! We have one of those game tables with the different tops you put on..so we put the foosball one on the floor. Sarah sits and tries to turn the handles, she tracks the ball with her eyes and we count to keep score! Plus big arms raised up to cheer!

Books:
Silly Sally
anything Dr. Suess - favorite is ABC and I Can Read with My Eyes Shut
Farfallina

DIET -
Saving the best for last here! Things have been soooo much better for Sarah since we started her on a gluten free/dairy free diet two years ago. Better sleep, less screaming, more alert, and no more constipation!
It is really easy. Just think of things she can eat, not can't....she can eat all meat, veggies, fruit, fish, rice, potatoes!

You see, the proteins in gluten (mostly found in wheat) and dairy are really hard to digest for anyone...but add on being special needs ---- most of whom have gastrointestinal disorders --- and pow!---you are slammed. Casein, the dairy protein, builds up in the body and is as potent as cocaine to the central nervous system. Gluten messes up the gut lining and allows yeast overgrowth that puts huge holes in the stomach lining and messes up the food processing and causes pain.

CAUTION: If you decide to try this diet, taper off slowly. We went cold turkey with Sarah and it was like a drug withdrawal....days of no sleep and lots of screaming. Also, it takes SIX MONTHS to get all of it out of your system, so be patient!