Welcome to Hope Rising!

'When you have come to the edge Of all light that you know, And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly'
Author Unknown.

Through this journey, no matter what we've faced....our Faith has taught us how to 'stand' and 'how to fly'

Please join us on our journey of Hope. Some times we are 'standing' and some times we are 'flying' - but one thing is for sure....our two amazing children (Will and Sasha) have been the biggest blessings in our lives.
While they struggle through life-threatening illnesses, they also show us how incredible life truly is. Their joy, laughter, fierceness, and tender spirits lift us and carry us through any storm we've had to weather!

Tuesday, March 10, 2009

Our LONG day today and DETAILS about Sasha's procedure tomorrow

Well - it has been a VERY long day. It was BEAUTIFUL out - a little over 80 degrees here I believe and I am nursing a little sunburn even!!!!

We got up early - gave Sasha her breakfast before the 'cut off' time - got the kids ready and headed into Atlanta with my cousin Whitney. We arrived at the testing facility for the Resting Metabolic Rate (RMR) - I took Sasha in. We got all set up and they were put this 'helmet' type thing over her - and she FLIPPED out - and I mean FLIPPED out. We calmed her down - she agreed to wear the 'mask' instead - but after we got her all hooked up in it - she freaked out completely and it was clear that the RESTING metabolic rate test would NOT be possible in Sasha's case as she was NOT interested in cooperating.
They said that it would NOT be useful to have her do this test if she can't stay calm and still for a period of time.
We were frustrated - and I wished she would have cooperated...but I had to put my frustrations aside and realize how scary this all has to be for her - a different place, new faces, and WEIRD things being done to her by people she doesn't know.
We had 2 hours to kill between appointments so we went out for lunch - and finished just in time for Dr. Shoffner's appointment.
He was really nice - very well versed on Sasha's case and focused on getting extra facts.
He didn't really give us much news - just that he felt that there was an issue in the 'neurotransmitters' in her brain and that it was going to be hard to tease this all out because she has SO much going on neurologically. He feels there is a genetic factor in this. He said that this is likely 'central' (in her brain) in nature and that we'll either be able to rule in or out Mitochondrial disease through this testing as well - - - and that was about it. He discussed his ideas on testing and we agreed to it - then he said the 'average' time (with no complications) is 4-8 weeks but can take as long as 12 weeks - then we should receive his BIG report and we'll know from there. I asked him, "What happens if you do all these tests and don't find anything?"
He said, "Well, clearly there is something wrong - but if I find nothing, then you regroup with your doctors up in MA and try to figure things out from there...the reality is that some people get answers...and other people don't."
While I appreciated his candor - it made me SO sad to think that we MAY NOT get answers...and then we're back to ground zero.
At this point I just REFUSE to even ponder this thought any longer as it does me (and Sasha) no good...but it still kinda stunk to hear that....
We were happy with our visit and he was just SO good with Sasha and he just had the greatest demeanor.

SO - the plan is to arrive at the center tomorrow in Atlanta at 6:45 (EARLY morning!)
She will have a fresh muscle biopsy, skin biopsy, TONS of lab work, and a spinal tap (all while under anesthesia) and that she should do pretty well recovering from it. guess is that maybe her procedure time is 7:30??? We should be seeing her in recovery by 10 the latest???
I plan on bringing the laptop to pass time while we're waiting or else I'll be crawling up the nerves are SO shot this week!
If I can get cell reception I will connect to my laptop and post an update after she goes in.
Thank you all for your prayers, advice (thank you Mandy!) and your support and concern for our family and our sweet Sasha.
Off to get Sasha ready for bed and HOPE she falls asleep sooner than later - and I hope to too!!!

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