Hi,
I hope all of you are doing well <3 We are all safe!
My DD is moving along! We are still trying to get the new ointment and medicine for the outer area of the wound. Its been almost 2 weeks, the pharmacist is working on the formula but all resources have refused coverage and its extremely expensive. Its really frustrating considering she needs it and this ulcer almost took her life! I continue to battle and get it covered. I must say I am feeling proud of the way its looking! I have been using the products I have at home and it has not gotten worse. I will take that as a MOM win!!! My DD continues to dream of Disney and I swear it keeps her motivated to wellness <3 I hope/pray someday we can return! When this nightmare originally started the doctors told us she would pass away and NEVER travel again. Encouraged us to stop treatment and let her go. Just typing that breaks my heart. Actually encouraged us to sell our DVC points! It sure has been one heck of a journey!!!!! I love seeing her sweet face everyday <3 Her siblings have been absolutely amazing in the help they have provided in caring for her <3 I make sure to remind them just how proud I am <3
Thanks for all the support and allowing me to vent. I appreciate it more then you will ever know! Another round of full blood work tomorrow. Its hard to believe we have been doing weekly blood work since Sept 2019! I hope at some point she can move away from that .. the weekly blood work rules our lives!