Monday, November 17, 2008

And then there were two...

The kids starting "Operation Christmas Child"!

The last 11 days have been full of events. Ana's leg pain remains out of control and that has led us in a new direction. After many attempts to get in touch with her neurologist in Charleston, Dr. G, we ended up on the phone with his new partner, Dr. K. Dr. K has been more than a doctor this last week, he has been an answered prayer. Whenever we start praying for God to help us get to Cincinnati permanently, something miraculous happens here. Things don't happen by "chance"... God has a plan. Dr. K has moved to MUSC from The Kennedy Krieger Institute!!! This is the institute that Ana went to for feeding therapy in 2006. KKI has more than an intense feeding program... they also have a "state-of-the-art" multi disciplinary neurological program. Dr. K has lots of experience and is use to taking a multi disciplinary (lots of specialist working together toward a common goal) approach. He has been like a breath of fresh air. Dr. K has been reading Ana's chart, researching meds, and keeping in touch. He called Saturday night to discuss the things he has figured out so far and asked me to have him paged when we arrived in Charleston today. There we were in Charleston... with the top physical therapist at MUSC, our wonderful PT from Hilton Head, and Dr. K... Dr. K left clinic to come see Ana and get feedback from her therapists!!! Dr. K says that Ana's case is very complicated, but he is committed to helping her be pain free! Saturday, Ana started a new medicine called Lyrica. If Lyrica does not work out then everyone will decide together what to do next. We are very excited to have someone so involved in Ana's case and are asking for Ana's prayer warriors to pray for Dr. K at MUSC. Pray for God to help him help Ana.
The other issue we are dealing with is the weight issue. I increased Ana's calories this week in an effort to stop the weight loss. I will e-mail the motility specialist in the next couple of days if this doesn't work.
Enjoy the pictures and I will update soon! Below is Ana's new schedule.

  • 20th- ST and PT & Meeting with Beaufort County Special Ed Coordinator
  • 24th- Urology Appt in Savannah
  • Sleep Study to be scheduled.


  • 3rd- Pulmonology Appt in Savannah
  • 8th- Homebound PT Eval & ENT follow-up in Charleston
  • 9th- GI Appt in Savannah
  • 11th- Homebound Speech Eval & Special Ed Teacher Eval
  • 25th- CHRISTMAS!
  • 2nd- Neurology Appt in Charleston
  • 6th- IEP meeting for homebound services
  • 7th- Neurology Appt in Atlanta
  • 23rd- Cincinnati follow-ups

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