I hopped on over to my blog this evening and realized how long it's been since I've posted anything! I've blogged during this time, but it was for my masters program and all things related to my professional life. It feels good to type away and look back at all my posts! I noticed that all of my posts have been on the joyful side and it appears that we lead such a fun life. While much of that is true, our life took a turn almost 2 years ago with the diagnosis of Alexis' ITP. Don't get me wrong, we lead a normal life and are relatively a fun loving family, but as a mom of a girl with a low platelet count, I'm constantly on-guard and making sure things are safe for her. Kids typically fall down and get hurt, but for Alexis that could mean a trip to the hospital to stop the bleeding. Not to mention random nosebleeds that need special skill in order to get them to stop…NEVER tip a head back when someone has a nosebleed!! I've trained Alexis the technique in case her dad or I are not available to help and someone tells her to tip her head back. I'm hopeful that she will tilt her head forward and pinch the bone in her nose. Keeping an eye on the time is important too as we've dealt with 2 hour bleeds before.
I'm writing this post for my own personal reflection. It's just how I have to deal with what has been given to us and the sad reality of what Alexis will have to give up very soon.
Ever since Alexis' ITP diagnosis, I've been feeling a realm of emotions…sad, mad, hopeful, scared, thankful, encouraged, silly, happy, guilty. The list just goes on and on as you can imagine. We've tried hard to make life for her as normal and as safe as possible, even allowing her to compete in contact sports (with her doctors approval.) However, I've spent the past two years grieving that the life I had envisioned for Alexis will not be possible. ITP will win and I'm angry!
Although her counts have remained at a safe level, they are not a normal level. That is why we've made the decision to pull her from contact sports after this summer is over. I've seen how aggressive they are becoming in these sports, even at their young age, and it makes me scared of what could happen.
This quote spoke to me when I saw it today...
Good news came our way at her last appointment which include longer time between blood draws (2 months) and 6 months before visits! He also lowered her treatment number which means she is able to increase her counts on her own! All great news and we left ecstatic! Her doctor is working on my brilliant idea to invent a self monitoring platelet count, but he informed me how complicated blood counts actually are. He is thinking about it though and that is all that matters to me! Maybe between the two of us, we can help out thousands of people with ITP!! I'm in it for the outcome and not the income, of course!
Even better news came when I got Alexis signed up for piano lessons! She is so excited about the thought of learning how to play…I'm a tad jealous and I hope she will teach me someday! She is willing to keep her on her schedule for however long she'd like to learn and play. We are so grateful for her and are eager to get to know her better as well. Other plans for the future include: learning how to knit, sew (thanks for grandma), drawing/painting, golf, and to run like her dad!! As sad as I thought I was for having to give up contact sports, I am thrilled that there are so many SAFE options out there for her.
