Day 1 at NIH- completely forgot to get a picture!! We arrived at - TopicsExpress

Day 1 at NIH- completely forgot to get a picture!! We arrived at 7:30 am for admission for all 4 of us. We were then taken to the floor and put in room and met nurses and several doctors. We also met with Lynne Wolfe who is the brains behind these research protocols. Jessie was taken care of by dr Carlos Ferreira and Jordan was taken care or by Lea Latham CRNP. We were not aware that we have to apply for guardianship for Jordan now that she is 18 so we almost had to reschedule her . But fortunately tony and I met with bio ethics committee and for the purposes of this visit they granted me to be surrogate for Jordan . So once we get home we will have to do the guardianship papers ( who knew right!!) Jessie and dad were taken down to lab and had blood drawn . Jessie and Jordan did great through all of this. Jordan slept a lot and ate a lot!! Jessie of course watched Clifford and smiled all day and ate !! They then decided to do ivs on both girls since they will be having many blood draws . This was not easy but they did it under ultrasound and all went well ( or so we thought) . Then we met with hepatology and both girls had high tech ultrasound of liver . ( this replaces having a biopsy so that is good news). Jessies numbers were a little high which we expected . Jordans was normal. Then we met with physical therapy for Jordan. She gave us a few recommendations on new standing frame that we should get for her and suggested pool therapy . ( does anyone know of anyone that would graciously donate a heated pool??!!!) We were finally able to leave hospital at 5:00. What a busy chaotic day. We were all exhausted but I was so proud of the girls . They handled it well. For day 2 they have to be npo after midnight so this will be fun. So please keep praying for them. Ill try to post day 2 tonight .