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

To say my life has changed drastically since Scarlett and I were diagnosed with a rare Platelet Storage Pool Disorder, is an understatement. My parenting has turned into nothing I could've ever imagined and we are faced with new obstacles every day. There is a plethora of character traits that I have taken on, that help to keep my little bleeder safe. And I'm being forced to adapt new ones with every milestone she meets.  So call me paranoid , overprotective, preoccupied, unjustified, relentless, or just a crazy mom..... but this is who I've become. Some things I'm not proud of, some things I am. . But all, are a part me. . . I put my hand in front of my kids every time they go down the stairs. I have bandaids, instant ice packs and napkins EVERYWHERE I go. I have our emergency information taped to the inside of the dashboard in our cars. Scarlett isn't really encouraged to wear shorts and skirts because I don't want people to see all the bruises o...

Yesterday Northern California was hit with one of the biggest storms we've had in over a decade. While other people were running around gathering flashlights, candles and batteries. . . I was checking Scarlett's emergency bag and going over all the different scenarios that could happen, if I sent my daughter to school, on the brinks of a natural disaster. It didn't take me long to decided that she wouldn't be going to school and I couldn't risk flash floods or down power lines being a reason I couldn't get to her, in case of an emergency. Days like this I'm reminded of Scarlett's bleeding disorder more than usual. My daughter and I have the rare bleeding disorder-Platelet Storage Pool Disorder, which leaves us constantly trying to get out of harms way and questioning the "what if's" all the time. I'm ALWAYS  worried, being a working Mom, that I'm not going to be able to get to Scarlett if she's having a bad bleed. Being a Ca...

Originally posted on October 15, 2014 on HFA 's website  http://www.hemophiliafed.org/news-stories/2014/10/infusing-love-taking-care-of-the-patient-the-caregiver/ Infusing Love: Taking Care of the Patient & the Caregiver Categories:  Adult Women ,  Families ,  HFA News ,  Mom's Blog: Infusing Love October 15, 2014 I don’t think I’ll ever forget the day I got the phone call — the one I had been dreading since my daughter was diagnosed with   Platelet Storage Pool Disorder (PSPD) . It was 10:30 AM on a Thursday. I was singing to the preschoolers where I work when my colleague brought me the phone. She had that look on her face–you know the one — I’m so sorry! It was Scarlett’s school. I knew she must be hurt. I immediately stopped what I was doing and reluctantly took the phone, frightened of what I was going to hear on the other end. It was the principal. “Kari? Scarlett hit her head. She ran into a pole in the hallway.” She went o...

Last week I was reminded of the fact, that simple things like date nights, couples trips and even Halloween parties at the local gym, usually involve a lot of planning . . . followed by a lot of worries. My husband and I went out to dinner the other night, and once we got to the restaurant, we realized neither of us had our cell phones with us. This sent my husband and I into a state of panic that I'm sure most parents don't endure.  We quickly asked to use a local land line to let my mother-in-law know which restaurant we were eating at, so she could call us if there was an emergency. What would ordinarily be a fun/spontaneous time away from the kids, quickly turned into a reminder of how we are NOT ordinary parents. We don't get to drop our kids off with a babysitter and not have a worry or care in the world.  Instead we are constantly on edge, praying something doesn't happen when we are gone, and always checking our phones to make sure the sitter hasn't calle...

To say that Scarlett's Make-A-Wish trip to Give Kids the World made a lasting impression is an understatement. It has been almost 6 months since our amazing trip to Our Happy Place and I can honestly say, it is something that is still talked about in some capacity several times a week. Whether it's my 2 year old talking about riding on the carousel or Scarlett reminiscing about yet another favorite part of her trip. . . Our Wish trip has made an impact on us that will forever stay in our hearts. This week one of Scarlett's bleeder buddies is venturing out into the same experience. An indescribable week filled with magical memories that only Give Kids the World can provide. As soon as I told Scarlett that her pen pal was going to Disney World this week, she asked if she could go to the GKTW website. She wanted to watch all the videos and find the story I had written about our unforgettable experience. She then proceeded to write these. . A list of some things that her...

I started my blog almost 1 year ago and I would be lying if I say it hasn't changed my life.  The amount of people I've connected with and been able to share my stories with has given me a sense of belonging and purpose for the first time ever. I take pride in saying that I've opened the eyes of thousands of people to the rarely diagnosed Platelet Storage Pool Disorder and I know sharing our story is making a difference. I'm so thrilled to announce that I now have a new forum to help raise awareness of PSPD and the daily worries and lessons that comes a long with it.  I'm one of the new proud bloggers for  Infusing Love on the Hemophilia Federation of America web site - A blog dedicated to moms of children with bleeding disorders. In my first blog I speak about our initial diagnosis and the  Fear of the Unknown .  Please check it out and share it with others and take your part in helping spread awareness. Written by, Kari Peepe pspdaware@gmail....

As if going to the ER with Scarlett on Thursday and having to get a CT wasn't enough .....last night Scarlett gave us ANOTHER scare! As I was getting Scarlett ready for bed, she suddenly went very pale and asked if she could close her eyes while I was reading to her... Then she complained her stomach hurt. I asked her if she felt sick or if she had to go to the bathroom and she ran out of the room before she could answer. Seconds after sitting down on the toilet Scarlett threw up red and what looked to me like several golf size blood clots. It looked like something out of a horror movie. Our bathroom throw rug was covered and it was all over my poor little girl too. No Mother should have to see their child go through this and I can't imagine what was going through her little 6 year old head.  I tried to remain calm, cleaned her up a little and told her I needed to call her hematologist. I hollered for my husband and the look on his face as he entered the bathroom affirmed I w...

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 ...