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

Dear HFNC's Family Camp attendees, I just wanted to say THANK YOU to all that helped take care of my princess this weekend. . . It was amazing to watch the community step up to give Scarlett the best camp experience while I was hauled up in the cabin taking care of her brother. I'm touched and forever grateful for all that you did. This weekend was the ever anticipated Hemophilia Foundation of N.California 's Annual Family Camp. My daughter and I attended last year for the first time and had a life changing experience. We had been looking forward to this years' ever since. Unfortunately, I'd be lying if I said the trip didn't start off on the wrong foot to begin with. Several days before we were supposed to be leaving, I was suffering though horrible pains and was questioning my own participation in the weekend. But I was ready to fight through it, in hopes of giving Walker the Family Camp experience he had been begging for, since his sister and I returned...

As I was sitting at the computer the other day preparing for an upcoming interview I have about life with a rare bleeding disorder, Scarlett sat down beside me and started reading the questions. As she started to answer them back I felt compelled to write it down. . . . Her answers were too cute and insightful not to share and so I decided to include them on my blog. A few details about your life: Your age now, where you live, what you do, hobbies, etc.   My name is Scarlett and I am 7 yrs old. My favorite animal is a zebra. My favorite color is yellow. I make my Mom happy by giving her massages with my brother. When I was in class one day we were doing math and I did really good because I did every single one in a really fast amount of time. If I had a pet kitten I would feed it and comb it and I would do the same with my other pets too. My editor said you have a storage pool / platelet disorder — is that correct? What’s the name of the disorder? Please tell me a little bit...

Each year the anxiety leading up to Scarlett's 504 and IEP plan seems to take over, but this year it was different.  I finally feel like the school understands the situation and is doing everything in their power to keep her safe while providing a social environment she can thrive in. This year Scarlett showed interest in coming to the meeting because she wanted to take part in deciding her restrictions. The look of astonishment on the nurses face as she described her "platelet bleeding disorder" and explained the steps and protocol to take when she gets injured was one I'll never forger. My heart filled with pride the more I heard her go on about her disorder-she was obviously a well educated little girl. Due to some minor head bumps Kindergarten year, followed by her enormous bump in the beginning of last year . . . left Scarlett's 1st grade of school with a lot of restrictions. She wasn't allowed on the playground unaccompanied by me (which I only coul...

This is a write up I did for BleedFree, Inc. back in January. . . Hello my name is Kari Peepe and I have Platelet Storage Pool Disorder.  Sometimes I feel like I should come with a stamp, that says WARNING! When my daughter and I got diagnosed with the rare bleeding disorder-PSPD. . . I've never felt so alone. The Dr.'s made me feel like our lives would change forever and that our daughter would never live like a "normal" child.  So I walked away from that first appointment picturing a life full of Dr's appointments, bleeding episodes, medications, and a lot of trips to the ER. Not to mention all my fears about the social impact this would have on her, once she reached grade school. But. . .  What I didn't foresee, was the friendships that I would find. My bleeder buddies have become such a huge part of my life, sometimes I forget that I've never even met these "friends" before. Friends I've known forever have slowly drifted away, an...

Yesterday as I was sitting down at circle time with the preschoolers, my worst nightmare came true.  The moment my colleague started walking over to me with the phone in her hand I knew it was Scarlett's school. My mind went into overdrive. On the other end of the line I heard Scarlett's principal telling me Scarlett was on her way to the office, she hit her head. The aide was bringing her with a quarter size hematoma that started forming immediately and they would call me again once she got to the office. Somehow while she was walking around with her aide in the quad at recess, she managed to turn around and hit her head on a pole. By the time the principal called me back I was in my car and heading to her school. I told her to calm her down and keep ice on her until I got there. Flying down the road to the neighboring town where Scarlett goes to school, felt like it took forever.  I was trying to convince myself this wasn't going to be a bad one and that the they were ...

I think I reached my breaking point this weekend. What was supposed to be a calm, peaceful trip to the redwoods ended with my daughter and I in tears and me realizing there needs to be some big changes in our household. My sweet, caring, intelligent daughter has turned into a master manipulator. Debating, crying or freaking out every time someone follows through on a consequence she has been threatened with. Because of the waterworks she usually puts on and because I feel so bad that I'm always telling her No because of her bleeding disorder, on usual circumstances, I must admit, we usually give in. . .Yesterday this was not the case. I guess I should start from the beginning. Scarlett was up at her grandparents cabin for what was supposed to be a double sleepover. My husband, son and I joined her on the second afternoon and had taken the kids down to the playground and to explore their favorite giant redwood tree stumps. After feeling like I had been yelling at Scarlett all...