Wednesday, November 23, 2005

Going to UT

November 23, 2005
Monday will mark the beginning of our next adventure to the West for the clinical trial! Mercy Medical has donated that miles needed for me to fly out as well and it is so great that we will be able to be together again on these trips. Emily has shown a great deal of "improvement" as she started making movements she had stopped not long after she was born. She is able to move her hands to her face VERY well and she even can bow her back a little when she wants to look at something out of her view. She is as LOUD as ever and keeps us on our toes. The medicine she is getting will not save her from the effects of SMA, but it looks like it is helping her maintain some strength she would have otherwise lost for ever. We'll will see where this takes us.

Friday, November 04, 2005


November 4, 2005
All is well and surgery is over. Emily is recovering well and we are now back in our own home. We will do our best to feed Emily by mouth for as long as we can, but supplemental feeds, medicine, and other nutrition will be fed via her G-tube. This will greatly enhance our ability to care for in many ways.
Our next event will be taking place at the end of Nov when we make another trip west for our next visit for the clinical trial. Thank you for your prayers and words of encouragement!!