We checked LilyGrace in today at Shriners Hospital in St. Louis at the Metabolic Research Center. Hopefully, we will find out more about her diagnosis of Fibrous Dysplasia and learn new possible treatments. There was some confusion at church about her stay in Shriners this week. We are not here for a surgery. We are here to begin the research process with the Metabolic team. They are one of the best in the nation and we are blessed to have been accepted into their research program. I think the confusion could have been due to the failed surgery at Children’s and the doctor’s recommendation for LilyGrace to be a patient at Shriners.
Today has been a long day. We have a little better understanding of Fibrous Dysplasia and also an assurance, from the doctor that her bone tumors are not cancerous. We are very grateful for this affirmation and are a bit more at ease. We do understand that FD lesions can possibly become cancerous later down the road, but that is not the norm.
We’ve only been here one day and are already extremely impressed with the doctors, nurses and staff at Shriners. We have been greeted with warmth and compassion at every turn. We are actually in the family quarters area which is nicer than most hotels. Being a children’s hospital it is geared to children. However, this Dad felt right at home with the air hockey table, xbox, ps4 station and the wii u. There is a basketball hoop shooting game that LilyGrace and I enjoyed. She hasn’t quite got the hang of making the baskets but has really enjoyed throwing the balls in the air. In her defense, she has made a few baskets. By the end of the week, I’m sure she will be beating us with no problems.
We would like to ask y’all to continue to pray for LilyGrace and the rest of the family. She has been a little nervous about this week but is finding her stay at Shriners to be very luxurious for now. We will see how she is feeling after her blood work/tests tomorrow.
That’s pretty much all for now. Lynette and I just wanted to give a quick update. We have had several texts and Facebook messages asking about everything.
Thanks for your prayers,
Isaac, Lynette and LilyGrace