Finally home!

Hello from Santa Clarita!
We made it home safe and sound after an 9 hour drive. Yesterday, August 7th, we had a 10:00am appt. with Dr. Ash. She is a fellow working with Dr. Ostrem and Dr. Starr at UCSF. Dr. Ash spent about two hours programming Emily. She used a hand held device, the size of a small label maker, to test the leads that were placed in Emily's brain. Each lead has four contacts and each one needed to be tested to see how Emily responded to each one. Based on this, she figures out how much stimulation each contact should receive. It was simply amazing to watch the control she had over Emily's body using the stimulator! There were a few times that Emily's speech was effected as she turned up the stimulator. This was all a normal part of the programming though. It was very exciting to see Dr. Ash turn on the stimulator, however, we will most likely not see any difference in Emily's symptoms for awhile. It could take a month to six months and some patients have even gone a year before seeing improvement. Each patient is different, so now we just wait and pray! We will return to S.F. in a month to have the programming checked and to make any necessary changes.

Emily's sutures were dissolvable so they did not have to be removed. The worst part of the whole appt. was when Dr. Ash had to remove the surgical tape that was used over the incisions on Emily's chest where the batteries were placed. It was extremely painful for Emily and I know Dr. Ash didn't enjoy it either! However, Emily was brave! We are not sure how in the world they can invent a neurostimulator that is implanted in the brain, but they cannot invent surgical tape that doesnt cause excrutiating pain when removed! Somebody please work on this!

Emily was hoping to come home and take a nice long shower and shampoo her hair. Unfortunately, she still needs to wait until Monday to let the incisions heal a bit more. She is counting the days!

We spent today re-stocking the house with food, and hanging out with Adam. Adam hadn't seen Emily or Steve in two weeks so it was nice for us to have some quiet family time together. Adam is getting ready to start school on Thursday. Steve officially goes back the week after, and Emily doesn't start school until Sept. 8th. She will attending a relatively new charter school in Santa Clarita called Santa Clarita Valley International. Summer has gone by too fast!

I will continue to blog as things develop. Thanks for following Emily's journey! It will be exciting to share her progress with all of you!

Love, Marci