Last week our Twinkle Little Star turned 9 months old! In energy and spirit she continues to amaze us. I wish I could say the same about her bone marrow, but all three cell lines continue to drop off. I wonder if we will be able to make it to transplant without blood transfusions. She hasn't needed a transfusion of platelets yet, but that could be coming if those numbers continue to dwindle. On Friday she was at 74 and the normal range for platelets is 150-450. What's going up, is her weight. Slow and steady seems to be our normal right now. Not getting earth shattering gains, but we're gaining. We may need to increase her GCSF dosing (this is the shot I give her, so her marrow makes neutrophils), but this isn't unexpected due to the fact she is likely outgrowing her current dose.
So to celebrate her 9 month birthday, Henley decided to give us a real run for our money. Last week she had an allergic reaction to dairy, which resulted in a 40 mile ambulance ride to the closet hospital. I've now added an Epi pen to our bag of goodies that must go everywhere. THEN the following day she was playing next to a wooden busy box toy, doing her usual bouncing dance an hit her head. It caused a deep enough cut next to her brow that we needed to head back to town and have that clued shut. She is really keeping us on our toes.
The last thing I want to mention in this post is that we have started to sell some T-shirts as a fundraiser for bone marrow transplant. I'll post the link below if you are interested in buying one. There is also a great conversation starter shirt that has been really popular -- STRAIGHT OUTTA NEUTROPHILS :) A play off the movie STRAIGHT OUTTA COMPTON. I'd love to come up with another design that has a more western, cowboy spin on things to use as a future fundraiser for the Shwachman-Diamond Syndrome Foundation (by the way, I've been recruited as an Advisor to the Board and am helping them amp up their social media outreach!). The foundation does so much good for our small SDS community and we want to give back to them when we can.
https://logomagicinc.com/healinghenley/shop/home
