Glo's wish
Mouseketeer
- Joined
- Aug 25, 2010
- Messages
- 173
Just catching this threat - we just got back from our MAW trip and GKTW.
I am a single mom of 3 boys ALL chronically ill with a mitochondrial disease (all wish children 17, 13 & 13 - 2 tube fed) and MAW here in Northern Virginia REQUIRED that I have 2 adults go on the trip. Since my partner Roger could not get off to go (plus he is not a "Disney person" although he has agreed to go with us maybe in November or Next January for a few days) as he will go on the cruise with us this summer for Cole's Wish - so my mom came. I flew too florida alone as she lives in southern Florida. I generally drive to see her due to ALL the medical stuff I need BUT flying with the 3 boys was not too bad.
As for medications, I had an ENTIRE carry on suitcase on wheels (the largest size allowed for carry on) filled with medications for all 3 boys - let me put it this way there was NOTHING but medical supplies in this suitcase. I had 2 feeding pumps, 2 replacement g-tubes, g-tube extensions (a couple of pump bags - I packed the rest), 2 cans of formula (packed the rest), epi pen, lots of liquid meds, formula shaker, etc. I also had the convaid wheelchair - which I took to the plane and then gate checked. This was the best.
Our MAW organization offered to rent us the required medical equipment down there at their expense - BUT my boys like their little zevex pumps plus Clay is on a specialized formula that is VERY expensive. BUT this may be an option for the nebulizer and pulse ox machine and the feeding pump. They do this all the time at GKTW. Also, you may want to look into shipping the diapers and things like that which are light directly to GKTW before your arrival.
As for seeing Cinderella at Akershus she was there when we had breakfast there last Saturday (along with Belle, Ariel, Sleeping Beauty and Snow White) - see below which is Jake (wish Child and Cindy)
MAW a wish gave us a VERY generous amount for spending money. We had breakfast on Satuday at Akershus and dinner that night with friends at Crystal Palace. Those were our only 2 ADRs in Disney. We ate at the NASCAR grill at Universal. I think we spent more on food the first day than most of the rest of the trip BUT it was worth it AND I ended up having money left when we came home. Jake's wish was for a date with the princesses and he did that and more.
Your plans sound great so far.
Sharon, thanks so much for the info! I love seeing your pics! It makes me so excited to go!!
I'm a little more at peace about the exspense check since I was able to file my taxes yesterday and have something to fall back on if I ABSOLUTELY have too. I'd much rather use that money to fix my van though!
I only have 2 ADR's scheduled (one of which my friend is paying for)and don't plan to make anymore. I would love to hear more about your trip!
I was having fun reading about Disney but Glo is not impressed by the lack of attention. She should be sedated first thing in the morning and get her MRI. 
