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!

Sunday, February 22, 2009

The whirlwind continues!!!!!

Well, it's been 2 weeks since my last blog entry...amazing how time races on! With 2 weeks to go until Sasha's trip to Atlanta....I'm trying to tie up loose ends and get organized (what a feat this is!).

As we prepare for our journey to Atlanta for Sasha, I've found myself struggling with the gravity of this trip on many levels.
While we are really fortunate to be able to see such an amazing physician - the circumstances surrounding this visit are not optimum. This physician usually takes a while to get in to see - after talking with Sasha's metabolic doctor, we got an appointment for just over a month. Insurance in our state usually denies 'out of state' physicians because we're in Massachusetts - the Mecca of the Health Universe....we were approved with no issue.
There are so many other factors that complicate this all - the good news is that Ralph was able to file for the Family Medical Leave Act (FMLA) so he wouldn't get in trouble for missing so much work....problem is, he won't be getting paid either!
Because of both kids immune deficiencies, in order to ensure that neither child gets sick (because as you all know, if one gets sick - so does the other) we have to pull both Will and Sasha out of school the week before we leave for Atlanta (so more school missed, sigh)....but, honestly - how much would that stink to get to Atlanta and have Sasha get sick - and not be able to go under anesthesia?
THEN....due to the immune deficiency - an airplane journey would not be the best choice (small enclosed area during cold/flu season spells disaster with a capital "D") we must DRIVE to Atlanta....
We have been BLESSED to be able to have a friend who is letting us stay with her for a few days halfway through our trip in Raleigh. We also were lucky enough to have a cousin allow us to stay with him in GA (he's 40 minutes from the doctor's office) so we won't have to pay for a hotel while down there....we are just so fortunate.

The appointment will be 2 hours long - this doctor specializes in rare diseases (her episodic ataxia/familial hemiplegic migraine that she already has a diagnosis for - and he specializes in Mitochondrial Disease - which they suspect- but have not confirmed - in her)....he will have his hands full with our family history for sure.

She will also have to have a resting metabolic rate test done - and I have NO idea how she will stay still for this (20 minutes resting with a mask on and 10 leads....on a 3 year old no less!)
They will likely do a battery of lab work and whatever else he feels necessary.

The next day she will be put under anesthesia and have a fresh muscle biopsy done. From what I understand, they will make an inch long incision into her thigh muscle and take part of her muscle out.

If all goes well she can leave the hospital later that day. We were told to plan to stay in Atlanta an extra day in case there are complications....we plan to stay a few days extra because I worry about her taking the long drive back immediately after the we will go at her pace, not ours.

The results will take 3-6 months to come back (yes...3-6 months....) - they do CRAZY tests to the muscle tissue that they take - and those tests take time...lots of it....but we're willing to wait if it brings us closer to an answer.

I struggle with Sasha having to go through all of this, but I realize that, after the year she's had: 5 comas (that we know of), one seizure, decrease/loss of skills over the summer (thankfully they returned with many hours of PT and OT), stroke like episodes, the ataxia and the extreme fatigue - I realize this IS necessary...I just wish it wasn't....I mean, what parent wants to have their child go through anything that causes any type of discomfort or pain????

There is a part of me that absolutely dreads this appointment because I am terrified of the doctor confirming that Sasha does in fact have mitochondrial would be the worst possible outcome as there (currently) is no treatment (besides a vitamin cocktail) and there is no cure (YET)...and it is progressive....but I would honestly rather know than pretend it doesn't exist - with knowledge there is power.

I will luckily have access to the internet via my cell phone (how cool is technology these days?!!!) and laptop - so I can update all along the way ---- I actually am going to do a photo journal of our trip down to Atlanta!

When we get home, I have to finish working on Project: Cure with Mark (music compilation that will be releasing May 15th at the Beer and Wine Tasting fundraiser!) and I am optimistic that we'll get Project: Hope done for the 15th as well (my solo CD).

I have to get ready for the Blood Drive (that's April 18th) as well as handle the massive undertaking of the Beer and Wine Tasting (thankfully I don't have to do this alone!).....but remembering how much time and effort it took last year - I know there will be no rest for the weary - but it's ALL worth it!

The good news is that I will be doing an interview for NECN in early May - which will get the word out about all of what has been going on with the our efforts for the Immune Deficiency Foundation (IDF), United Mitochondrial Disease Foundation (UMDF), and the National Ataxia Foundation (NAF) and we can raise some awareness for these diseases!

We are just so incredibly blessed to have amazing friends and our loving family to support us through all of this.
I often hear, "I just don't know what to say..."
Trust me....I've been on that boat MANY times.....sometimes there really is nothing TO say...
You don't have to say anything....just being there....lifting spirits and praying and offering support means more than you will ever know!

I send my prayers and encouragement to those of my friends out there who are on a journey like ours - it is never easy....and it's far from fun - but knowing that we're not alone makes each step a little easier to take...each bit of bad news a little easier to bear, and each moment of triumph that much sweeter....

Blessings to you all,

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