Okay...so this week was CRAZY. Sasha is FINALLY looking better - it only has taken 3 1/2 weeks! Last week she looked terrible - she was pale and she was really wiped out the whole week - it was tough for her.
Both Will and Sasha's doses for their Vivaglobin (sub-q infusions) were increased because of all the breakthrough infections they were getting. We got the shipment Friday and they will infuse Tuesday with the new amount. The immunologist also put Sasha on a daily antibiotic (that she will start as soon as she's done her 21 day course of Augmentin) because he's not happy with all the break through infections she's getting and he wants to give her system a rest.
Will is doing MUCH better and he's just the sweetest little cherub!
We were getting things ready for the trip. Last week was all about finishing up recording for Project: Cure (which is coming along nicely, thanks to all of Mark's hard work!) so that Mark could do his part without me holding it up!
Check out the 'teaser' song for Project: Cure at: www.myspace.com/projectcure2009
(that's my song!!! Mark did an AWESOME job mixing and mastering this!)
The Project: Cure website is under construction but the URL is www.projectcuremusic.org and, once it's fully up and running I will post it 'officially.'
SO...we did hit a BIG snag last week....
Our plan was to take our tax return (we usually get a big return because we claim 0 and have more taken out throughout the year)...so we were going to take our return and purchase a used vehicle that would be reliable enough to get us to GA as we felt our minivan would NOT be a great choice. I realized on Wednesday that it hadn't come yet (state had come but not federal) so I called the IRS - turns out there was a 'processing error' on their end and it was going to delay our taxes 3 weeks! WHAT?????
Seriously? SO, I explained to them that we were counting on the money from our tax return to cover not only the expenses to get down there but also another vehicle. They put us into the Taxpayer Advocate Office and they were going to try to expedite this so we MIGHT get it the day we leave...MIGHT.
I was starting to freak out a bit....
I called a friend who said he'd do what he could to help....he called in a favor and I received a phone call Friday that a car rental place in our area was going to let us use a minivan rental FOR FREE to get us to and from GA.....HOW AMAZING IS THAT.....and to our friend....if you're reading this....THANK YOU FROM THE BOTTOM OF OUR HEARTS!!!!
It SO relieved the stress of figuring out 'Plan B' (since we didn't have one....sigh).
I swear that Murphy's Law has a bulls-eye right on our family.....if it CAN happen - it happens to us.
Truth be told....I kept thinking of the bible passage that states that God never promises you a life free from strife because you believe and follow Him - but He promises that He will be there and He will guide you through this...and every time things seem to be down and out....we always get a 'life-line' ---- always re-confirming that passage.
Ralph and I went shopping last night to get the rest of our stuff for the trip (thank GOD we did because we're forecasted to get 15+ inches of snow between tonight and tomorrow night/early Tues a.m.).
Next week will be CRAZY!
I will be packing and cleaning (so that when we get home the house is CLEAN and we can 'decompress' without having to do much of anything!) today, Mon & Tues while Will and Sasha have their cousin over for today and tomorrow to help pass the time!
Tuesday Sasha's wheelchair/stroller arrives!!!! She will be fitted in it and they'll show us how it all works - so we WILL have it in time for the trip!!!!! PHEW!
Wednesday we have a meeting with the school to talk about doing some type of Primary Immuonodeficiency Disease (PIDD) awareness with Will's class for some time in April. We are very excited about doing this because we know it's a part of Will's life that we want his peers to share an accept without fear. Later in the afternoon I have an appointment with another family member in Boston - she will be seeing Sasha's neurogeneticist and hopefully hearing her story and her issues will help the doctor to see Sasha's picture and our entire family picture more clearly.
Thursday will be busy! As of right now I am tentatively scheduled to meet with Sen. Fargo and Rep. Atkins at the state house to discuss the legislation that is going to be up for vote soon - it will put more funding in for research for a cure/treatments for Mitochondrial Disease. I also have another appointment in the day as well - so hopefully all will go as planned. I sent out letters to 10 legislators on Friday (at 7 a.m. lol...yes, this is what I do with my time when I can't sleep and the kids are still sleeping!) and I got those 2 responses immediately!
EARLY Friday we will be leaving! We will be doing a little blog journal along the way - taking pictures and telling stories of our trip down - I can connect to the internet with my laptop and my cell phone...how cool is that!!! We're stopping in NC to stay with a friend (what a blessing that is) for 2 days and then we'll be heading into Atlanta for the 9th - we'll be staying at my cousin's house (another blessing!)while we're there. Sasha's appointment is on the 10th and the Fresh Muscle Biopsy is on the 11th. We will stay as long as it takes her to be ready to travel back home.
It will be a long journey...but we hope that the beginning will at least be FUN for the kids ---- when we arrive in Atlanta - it will be different...but there's no reason the way down can't be all fun and games!!!!! We're going to make the best out of this time.....
To the people who helped make this trip possible (whether it be lodging or transportation) THANK YOU FROM THE BOTTOM OF OUR HEARTS!!!!!! You can't even begin to understand how much it means to us. We TRULY are blessed!
Okay....I'm off to do some more cleaning and packing while there's still time!!!!!
Please pray that everyone stays well and that things continue to fall into place so this trip can go off without a hitch!!!!!
We'll keep you posted!!!!
Stefani and Ralph