Hello from freezing Pittsburgh!
William had a good day today. They have stopped his continuous pain medication and just have it on an "as needed" button. He received platelets again today (second day in a row). His doctors say that is normal during the engraftment stage to need several platelet and blood transfusions as the body heals. His white blood cell count continues to rise which means the donor stem cells are multiplying where they are needed.
Did you know that Hunter's Hope advocates screening for six Lysosomal Storage Disorders (LSDs) in states across the U.S., including Krabbe, Pompe, Gaucher, Niemann-Pick, Fabry and Hurler Syndrome? Currently, Missouri and New York are the only states that screen for these diseases. If you haven't already, I highly urge you to fill out the form, it only takes a few minutes (literally a few, the form is made for you) to send an email to your state's representatives. I found out that Alabama (where William was born) has turned down adding this to the newborn screening for 2 years in a row. What if they would've said yes...what if.
William had a good day today. They have stopped his continuous pain medication and just have it on an "as needed" button. He received platelets again today (second day in a row). His doctors say that is normal during the engraftment stage to need several platelet and blood transfusions as the body heals. His white blood cell count continues to rise which means the donor stem cells are multiplying where they are needed.
Did you know that Hunter's Hope advocates screening for six Lysosomal Storage Disorders (LSDs) in states across the U.S., including Krabbe, Pompe, Gaucher, Niemann-Pick, Fabry and Hurler Syndrome? Currently, Missouri and New York are the only states that screen for these diseases. If you haven't already, I highly urge you to fill out the form, it only takes a few minutes (literally a few, the form is made for you) to send an email to your state's representatives. I found out that Alabama (where William was born) has turned down adding this to the newborn screening for 2 years in a row. What if they would've said yes...what if.
Here is the link to the form, please take a minute.
https://secure3.convio.net/hhf/site/Advocacy?cmd=display&page=UserAction&id=111
https://secure3.convio.net/hhf/site/Advocacy?cmd=display&page=UserAction&id=111
Abbey, this story is amazing. You and your family sound awesomely strong. Especially your little guy! You guys are all in my thoughts and prayers. I just filled out and submitted the Hunter's Hope form and I am now very aware of this issue. Peace, Shae Hoschek
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