Location: Delaware, Ohio, USA
Form of EB: Recessive Dystrophic
Birthdate: September 22, 1998
Lives With: Mom Molly, Dad
Greg and 2 Cocker Spaniels named Maggie and Heidi. A new baby brother
is coming soon :-)
More About Rachel:
Rachel is a very happy,
outgoing little girl. She has gone through a lot during her first
18 months of life, but she hasn't let her EB get in the way. Rachel
is a HUGE Teletubbies fan. The Teletubbies have pretty much been our
savior during baths, bandage changes, and meal time. Rachel knows
all of their names and sings joyously along with them. We have all seven of the Teletubbies tapes and they
are constantly being played in the VCR. Rachel even dressed up as
Po for Halloween. Everyone in our neighborhood thought she was adorable,
although someone did mistake her for the devil.
Another favorite past-time of
Rachel's is playing with our dogs Maggie (or Baggy as Rachel pronounces
it) and Heidi. She loves to chase them around the house yelling
their names and poking her fingers in their eyes and noses. The
dogs really don't appreciate this though. Rachel also knows to call
Heidi "BAD" when she walks by the puzzle piece that Heidi chewed
up. But Rachel always seems to be able to put Heidi in her place
by chasing after her with a child size broom, that Heidi is thoroughly
Rachel recently had a wonderful time in Florida
at Disney World. She got to see Mickey Mouse and Cinderella's Castle
and she even got to ride the Merry-go-round with her dad. Rachel
also met and played with a lot of other kids who also have EB. It
was a fun time for all.
Rachel is usually a pretty good
sport about all that she has to go through. So far she loves to
take a bath and as long as Teletubbies are on she doesn't mind the whole
bandaging ordeal. The main problem that Rachel has is swallowing.
She has only had to have one surgery so far and that was an esophageal
dilatation. Rachel's diet consists of very soft, mushy foods.
She absolutely loves yogurt (which is "Pudding" to Rachel).
She also eats applesauce, ice cream, cheese puffs and of course 3 cans
of Pediasure. Even though Rachel's diet is restricted she continues
to gain weight very well, as she weighs 25lbs. now.
Rachel also will have a baby
brother coming in September. I have been trying to tell Rachel
that there is a baby inside of mommy's tummy, but I don't quite think
she understands. When she lifts up my shirt she says "Baby",
but I don't think she actually understands that there is a real baby in
there. It will only be another 4 months before she can actually
meet her new brother, his name might be Matthew Alan (who knows?).
Rachel is the best thing that
has ever happened to us, EB or not. Both her mommy and daddy love
Send e-mail to Rachel's
You've got a friend in me from Toy Story
Even if you're not, pretend to be. No one can tell the difference.
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