Warning...this post may be lengthy. After watching this video, I had to post it to Rylees page. For those of you who have kept up from the very beginning you understand how happy we are that she is getting all this coordination back ( except for the end of the video, but I think she was just being her normal silly self). And I will admit, I was starting to be very pessimistic concerning her left hand. But it seems within the past several weeks, not only is she becoming more and more coordinated, but the strength and control she has started showing in her left hand is amazing. She is still having issues, but has improved considerably. As excited as we are that her chemotherapy is ending, we are just as scared to start the next step of her journey. Vasculitis ( especially in children ) research is very new in the medical world. Rylees doctors had never treated anyone so young so they went into her chemo dosage blind. We were truly blessed to have such amazing doctors that were able to administer it in such a way that she had no serious side effects at all. Her next treatment has rarely been used in children as well. Again, they will be going into it blind. So please keep the prayers coming. They have definitely worked thus far. And also, as excited as we are that she is almost completely off steroids, we are just as scared that she will have a relapse without any in her system. We just continue to have faith that God is guiding the doctors as they make their decisions. Our family really appreciates every dime that you have donated for Rylees care. But if you feel compelled to do so, please consider donating to the Vasculitis Foundation. Rylee is doing her part too. While in Boston, she donated information, blood and spinal fluid to be held for medical research. Her parents basically agreed to anything that didnt involve extra testing or additional pain to Rylee. I guess I just wanted to let you all know that your support, love and prayers are working. Rylee has come a long way but still has a way to go. So keep the prayers coming! ☺️ God Bless!!!
Posted on: Sat, 23 Aug 2014 02:02:35 +0000
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