Hi all, It was wonderful meeting Michelle and Karen this past week.
And I know that Alex enjoyed playing with both Seth and Kiren.We
will
be leaving the children's inn in the morning and heading back to
Texas to put in a shunt.
Alex's pressure was still elevated with white cells
a clear indicator that he is still inflamed, and that the pressure
even though wan't as high as it has been, it was still too high.

We spent Friday at Dr Reins office looking at Alex's MRI of his
right knee.
He now wants a CT scan to see if the growth plate on the right
side of the knee has already closed, if not he wants him to have an
osteotomy to the right femur asap to correct the valgus and prevent
premature closure which will occur soon due to the strain on that
side. He will use external fixtures to support the ostomy as Alex is
very good at clotting off his big vessels and couldn't really be on
bed rest for the 6 weeks it would take to heel. We had been told
that we could use a staple to slow the growth of the left side of
the knee but have since been told that it would stop his growth
plate completely. I will speak to Dr Warren on my return.

I spoke with Dr Goldbach-Mansky about our new members Colin and
Lisa, and would like for them to contact her or Anna to get into the
N.I.H protocol. She is more than willing to see Fynly and as they
are already in year two can more than help get your son on the
medication that he needs and quickly.I can't believe that your Dr's
are dragging there heels and making you wait.Please call. Infact she
asked that any of our new members who are not in the protocol to
give them a call to get in for testing and possible treatment,
especially the families with young children.
We will be returning to the NIH 15th Jan for our next appoinment

love to you all Kate.

Karen. We talked about who we should target next in regards to
diagnosing these children early. I spoke to Dr Goldbach-Mansky and
she thinks that we need to get the word across to the
paediatricians. if we think about it, they are the first people we
turn to once we leave the hospital. food for thourght.











get in for testing and possible treatment, especially the families
with young children.