A Touch of Scarlett, our journey with a rare bleeding disorder

Walking in the door from work the other day, I found Scarlett hauled up on the couch, sucking on a piece of ice.  With a frightened look on her face and a bloody paper towel in her hand she proceeds to tell me that "it's been bleeding since she ate chips."  After listening to her story and examining her mouth we found out Scarlett had her first loose tooth.  An exciting milestone for most children.  But one we were dreading for fear of the unknown.  Mouth bleeds are one of the biggest issues with people with Platelet Storage Pool Disorder and we were uncertain how losing her baby teeth was going to go. Because of the rarity of our disorder we didn't know if the meds would work and how much blood we should expect.  When I was a child, I remember some instances where there was a large amount of bleeding after a loose tooth, and we tend to use my history as a resource on what to expect with Scarlett.  But after comparing stories with my Mom, we think al...

My biggest fear (and something I've seen countless times, being a preschool teacher for 15 years) is children bumping their heads.  Bumping them into each other. Bumping them on the floor. Bumping them on a stair. On a slide. On a swing. . . Everything! And this is what I'm supposed to be trying to prevent my child from doing?  Not an easy job to take on AND one I'm tired of defending.  Because Scarlett's condition is so rare, Dr.'s don't know for sure that the medicine she's been prescribed is actually going to work in a life threatening situation. . . So there advice is to be preventative. Try to do everything in your power to lessen the chances of her getting hurt.  An impossible task to take on, BUT one I'm being asked to do. Scarlett iceskating  The question of Birthday Parties, Play Dates, and Sleepovers started for Scarlett, when she was about 3 years old. The preschool I taught at and that she attended, left us with many invitations to all ...

I'm ending Scarlett's first year in Elementary school feeling a little depressed and defeated by her bleeding disorder.  When she started Kindergarten we were very reluctant to label her as special needs and didn't want her bleeding disorder to affect her school, in any way.  I knew the federal laws that were put into place: the Individuals with Disabilities Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 were there to help us and protect her rights for a proper education, but I still felt uncomfortable with labeling her as special needs. . . for fears it would be producing some sort of a stigma.   And we surely didn't want to have to restrict her from playing with others. . . fast forward to the end of the year and she's been pulled from climbing and finds herself already having to play by herself because the other kids play to rough. Last week we had a meeting to go over her 504 plan for next year and the school is suggesting she doesn't get to ...

It's been two months since our Make-A-Wish trip and it's safe to say that our family still talks about all the fun we had and that it has made a lasting impression on all of us.  My daughter's room is filled with posters overflowing with pictures from her trip to Florida and her Wish Reveal party and memorabilia covers every surface of her room.  She will pack up her bag of pictures, brochures, stuffed animals, her trophy from Village Idol, and give a presentation about her trip to anyone who will listen. . .with her two year old brother chiming in whenever he can with statements like "Walker ride da chicken, on na carousal at da The Village." or "I saw a Mickey, at The Village." It's safe to say Make-A-Wish and Give Kids the World will remain in our hearts forever and thoughts from our trip still consume our minds. . . As my daughter and I were driving home from school the other day. . . She asked ... "Momma, when I grow up and have a daug...