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

I went to yesterday's genetic specialist appointment hoping they would be able to give me some insight into why I have this rare bleeding disorder. . .  where I inherited it from and how my children and my children's children will be affected by this. . . I came out of the appointment with literally no new information and feeling more alone than I've ever felt since being diagnosed with Platelet Storage Pool Disorder.   Up until this point I've seen a specialist in Kaiser Santa Rosa, Kaiser San Francisco and Stanford Medical Center all in hopes of finding someone who gives a shit enough to help me find some more answers. There simply has to be people out there researching this disease if it's listed under the umbrella of Hemophiliacs, where are they and how do I get hold of them? Because there are no other cases to go off of. . . much of the decisions being made about Scarlett and I are based on how to treat a Von Willebrands patient yet scientifically/biologicall...

It's official. . . We got the call saying that Scarlett's Make a Wish to go to Disneyworld got granted and we will be staying at the GIVE KIDS THE WORLD VILLAGE .  We are flying out on Friday March 28 and will be returning the following Thursday.  Upon looking at their website I was brought to tears reading about all the amazing adventures that are in store for the family when we are in Orlando.  Scarlett's reminded of her bleeding disorder daily and is always feeling like it's affecting her life . . I hope this magical vacation gives her a time where she can just be a kid and not have to worry about anything else. We are so excited but are going to try and keep it a secret from Scarlett until her Wish Reveal party in a few weeks. . . If you would like to see where we will be staying and read more about this amazing destination just for children with life threatening diseases . . Please visit Written by, Kari Peepe ©KariPeepe/atouchofscarlett.blogspot.co...

So as I've mentioned before raising siblings when one of them has a bleeding disorder is a daunting task . . . every time they play rough with one another or energy levels run too high, my husband and my worry meter goes through the roof and we are usually forced to separate them.  Being that Scarlett is the oldest, she usually gets sent to her room . . . . no matter who was at fault. I'm a preschool teacher so I take pride in the fact that I usually can start to see a situation going from bad to worse early enough to alleviate any possibilities of one of the kids getting hurt. . . LAST NIGHT< THAT WAS NOT THE CASE.  What started off as hearing belly ache laughing from the two of them in the back of the house, quickly turned to a blood curdling scream from my daughter that left me sprinting down the hall as fast as I could get to her . . .There I found a bite on Scarlett worse then I've never seen in the 17 years I've been working with toddlers.  Granted I know tha...

I wouldn't say that I'm a religious person or that I was raised with GOD or The LORD instilled into my brain.   But I do believe we were all put on this Earth for a reason. . . that we all have a calling, something that makes us different than everyone else and that can give us the power to change the lives of others in a positive way!  I believe now. . . that my daughter and I were diagnosed with this rare bleeding disorder for a reason, and I think it was so our story could be heard and we could reach out to others and start making a difference.  Our history and personal truths all tell a story and hopefully sharing ours will change the lives of others. Now. . . . as I mentioned before I've never been super religious, following a certain religion that is. . . I attended numerous church services of countless different religious back grounds and none of them really struck with my inner core beliefs.  I've always found it odd to have thousands of different kinds of ...

Finding creative ways to keep my daughter (who has a bleeding disorder) safe while providing enough stimulation for my son whom is a toddler can be frustrating at times . . .  but Family Fun Days have become an amazing way for the family to get together and enjoy each others company, while trying to forget about all the craziness. Our Family Fun Days vary from week to week depending on the weather, schedules, money and so forth but each week I try to plan something . . . whether it be a cooking project, an art project, cozying up in the bed and watching a kids movie, visiting a local hot spot, or even a special lunch followed by a trip to the park . . . just something out of the ordinary that we do with the kids and give them our undivided attention. Summer Time and the Fall are obviously our more active months out doors.  We typically try and do something "special" and outside once a week, during these months and take advantage of everything our local counties have to o...

Platelet Storage Pool Disorder(Deficiency) is a rare bleeding disorder that cause Pistaxis(bleeding from the nose), Menorrhagia (heavy mentstrual cycles), extensive bruising, and surgical and obstetric bleeds. It's so RARE that it's really hard to get any concrete answers about a life plan after diagnosis.  Anytime I meet with Dr's. . .I've read the same article, heard the same statistic, or seen the same puzzled look on one's face.  It truly is an undiscovered disorder growing in diagnosis, yet nobody is willing to take on such an immense research project to find out more answers. Platelet Storage Pool Deficiency is described as a RARE platelet abnormality  that causes a bleeding disorder! Platelet Function is a continuos process that starts when the  vessel  wall is injured. It is said that PSPD is a  secretion   disorder  that takes place in the Extension Phase of  platelet   function . PSPD is u...