Wednesday, January 28, 2009

Home and settled... or not...

A peacock at the zoo.

Her new bed!!!

Ana playing at the airport.

I would have updated sooner, but we have been running since we got home. We were home by 11PM Saturday night, and I had the last bag unpacked by 1:34AM! I can't rest until things are complete... strange, I know.

We woke up bright and early Sunday to go worship our Lord and Savior together as a family. Sunday night we crashed fast... I was over exhausted and so was Shey. Monday began with a visit from the physical therapist. Ana is trialing a walker to see if it will help her with the instability and fatigue. Shortly after the therapist left... the bed arrived!! She is excited about her new bed, and can't wait until her room is complete so she can enjoy it! Monday afternoon the special needs coordinator for Beaufort County Schools came to meet Ana and that was our last appointment for the day.

Tuesday started off smoothly and then a trip to Charleston to see the neurologist. We are more determined than ever to find a resolution to the pain. Dr. K is on board and has been in contact with the mito doctor and the motility doctor from Cincy. The plan was to give her a type of Valium when the crisis begins, but that plan fell through. Ana has a history of bad reactions to drugs in the Valium family. For now the plan is to meet with a behavioral psychiatrist who can help with some calming techniques. We are also being referred to the MUSC pain management team. At this point we are unsure of how to deal with all of this... so for now we will pray. Dr. K is doing further research into the matter and he should be getting back to us soon. He did up the Lyrica dose and we began the increased dose tonight. He is going to check the levels of these drugs in her blood to see if she is metabolizing them. I will let you know when anything changes. The day ended with a birthday dinner for Daddy! He was so surprised!! The waitresses did a great job of embarrassing him! Thank you!!

Wednesday will start off with Woman's Life at church. Then, in the afternoon, Ana's teacher will come for her first visit. Ana is super excited!

Thursday the OT is coming and Friday she begins Heroes On Horseback!!!


A fundraiser is in the works for April 18th. This fundraiser will help pay for the next years worth of medical expenses. We need everyone praying about this event! If you are local and wish to help in any way, you can e-mail me and I will get you in contact with the planning team. I will give you more details as they become available to me!

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