I had just typed up a lot of information and then our security shut down my window...
Graci is doing much better, although we were excited about her goiing to school tomorrow and getting back into a routine and she now has a green nose, a speckled rash on her face and chest and a dry cough. So we are going to the doctor tomorrow and not school. Rachel ate lip gloss today and recieved a case of diareah so boy are we having fun:)
PLEASE VOTE NOVEMBER 4th!
We are returning to Duke for Graci's 3 year check-up. Wow I can hardly believe it has been that long, if you will be there at the same time or remember us we love you and would love to see you; If you lost a child and were there with us, we remember them and mourn yet if they had a terminal disease or their transplant was experamental like ours we rejoyce for their peace. While Graci is happy and doesn't know any different. it is hard when I go to church and a class full of 3 - 5 year olds ask me if she is my baby I tell them yes she is a big baby in the head.
How can they understand an almost 5 year old who is 9 months old mentally. Please pray for us as she is 70 lbs now, it is so hard to change her in public, she doesn't help you at all, she is very loud at church, and none of the calming medications really work very much. Other people really do not understand. I have nursing care and my husband I know that I am blessed, but I still feel sad and depressed at times, I feel like I have done something wrong or there is something more that I could do, then I just want to get away, I feel that we have missed so much, but then I want her there. Does every Sanfilippo Parent feel this way? We talk about a group home just because she is so big, I wish God could have made her small and calm at least if I had to have this "gift" and I love her so much it hurts, I want to take away all her pain and suffering. Then I feel so guilty when I am tired or don't feel like doing things with them, but Graci she really just enjoy's her movies, eating (certian things), going bye-bye, Daddy, Walks and watching "Dog" & other kids play. That is about it!
Enough venting I really love and miss you all and I do try to take them places we went to the fun house on Friday since it was Fall Break for the girls from school and we are going to Durham November 9 -14. Below are the links as promised.
TUBEROUS SCLEROSIS:
http://www.tsalliance.org/
NATIONAL MPS SOCIETY (SANFILIPPO) :
http://www.mpssociety.org/
DUKE UNIVERSITY PEDIATRIC BLOOD & MARROW PROGRAM
HOME: http://www.cancer.duke.edu/PBMT/
Graci's Doctor's: http://www.cancer.duke.edu/PBMT/fac_staff/default.asp
We love you all thank you for your prayers and support for the many years. Especially to our beloved friends, family, church's, COTA, DUKE, UPS, SPOUSES, kids, and most of all our GOD above and his only SON who know's and has a plan to work out everything for our good and his glory.
~ the Esparza Family
