Retic 14.44 (Normal .50 - 1.50)
Weight 28lbs 14 ozs (But it was a new nurse and she let her keep her clothes and diaper on)
Sunday was the big day!!!! Dani is 6 months post transplant. We did go to clinic yesterday (Monday) to make up for missing Friday. As you can see the numbers slipped a little but are still ok. The Retic is showing, because it is high, that she is still chewing up Red Blood Cells. So we want to see that come down. She will get her last infusion this Friday and hopefully her body will balance out. She is now being weaned off of the steriods. She went from 7ml to 4ml in the last week. Hopefully she will lose some weight so she can wear some of her new outfits she just got. She is a buddha baby right now.
I received an email from another Mom of a Hurler's patient (which I need to call ;) ) and her daughter is 10 years post transplant. She has Cardiomyothopy and had this particular Anemia ... amazing how similar they are. She said that she is free of the Anemia now but it took years to wean her off meds. So that kind of puts this in perspective. She also said she is a normal and social 10 year old with no orthopedic issues. I can not wait to talk to her more.
Last but not least to mention is the "Thanks Mom" Marrow Donor Drive through the National Marrow Donor Program is going on now till May 21st. That means that it is free to become a donor right now (even online!!!! ). If you have not done this yet please consider it and I will post the link below. Save a life!!!!