Thursday, May 27, 2010

Dear Son's Make a Wish Trip-Day 1-We're Off to Orlando!


It was hard to believe that one year ago, we spoke with the Make a Wish organization about a wish for Dear Son and the day had finally arrived for us to leave for Orlando. Back in October of last year, I created a Make a Wish travel notebook to help me prepare for our trip. During our trip, I kept a journal of each day of our trip, so I could share it with you and also remember all of the glorious details of our special trip. A special thank you to Laura and Angela, our wish sponsors, along with the Make a Wish organization, for making our trip a great one. So let's get started!

Sunday, May 16, 2010-Day 1

Our flight for Orlando was scheduled for 11 a.m. so the limosine was scheduled to arrive at 8 a.m. I had been up all night trying to make certain that I did not forget any little detail and to try to make sure the flight went smoothly. This would be the most challenging day of the trip, since I wasn't certain if Dear Son could sit up long enough to make the actual flight, let alone sit up at the airport.

Windy City Limousine was scheduled for 8 a.m. which meant I needed to get Dear Son's feeding started at 3 a.m. It's a four hour feeding in the morning and I wanted to give him an hour to urinate so we wouldn't have to worry about him going to the bathroom on the plane since he is not toilet trained. Everything seemed to be going fine and the limousine arrived 15 minutes early. The limousine was really something. It was actually a large, white brand spankin' new bus with black leather seats. It was only ten days old and nearly the size of a regular city bus. It even had the "new car" smell. It was great to finally be on our way to Florida. I had talked about this trip with Dear Son for months and it was great for it to be actually happening.
I had printed our boarding passes and checked our bags the night before so I could use curbside check in. Once that was done, we went into formerly nation's largest airport where the TSA whisked us through. We never waited in line and it went pretty fast. I asked for a "visual" inspection instead of going through the normal security since Dear Son has a Vagus Nerve Stimulator implanted. Everything went great!

Dear Son sleeping at the gate.

Once we arrived at the gate, I asked to gate check Dear Son's wheelchair and requested an aisle wheelchair to get him on the plane. They gave me a receipt for his wheelchair. At the gate, I chose to lie Dear Son down so he could rest enough to sustain the ride. Fortunately, the benches did not have arm rests so I could do this. (This was not the case at the Orlando airport so on the return trip I was unable to lie him down to rest at the airport.) We were quite early for our flight so we spent a few hours at the gate.

Dear Son sleeping at the gate.

As our flight time got closer, no one had arrived to take Dear Son's wheelchair. I went to the gate again and finally they sent someone to look at his wheelchair. The flight began boarding and we still did not have an aisle wheelchair to load him on the plane. I spoke with the agent at the gate again and they said they were paging the TSA and that they were responsible for the aisle wheelchair. The entire plane was fully boarded when they finally arrived. We were the last people to board the plane. The TSA states they were never called. We ended up using Dear Son's wheelchair to get him to the plane and then transferred him to the aisle wheelchair so he could get on the actual plane. Because Dear Son has no tone, his arms and legs flop all over. This made it tough for him to sit in the aisle wheelchair. Dad ended up placing the straps over his arms in order to keep him from falling out of the aisle wheelchair.

Dear Son in the aisle wheelchair. This wheelchair is narrow enough for him to board the airplane.


Due to Dear Son's low tone, Dad had to strap his arms in to keep him from falling out of the wheelchair.

Once he was on board, we had to transfer him to the seat. Dear Son and I had a first row seat in the coach section which was the only row that had enough room to transfer him. Dad was supposed to sit two rows back however at the last minute, when the man with the aisle seat saw the difficulty in transferring Dear Son, he switched seats with him. It was difficult getting Dear Son out of the aisle wheelchair and into the seat. Dad had to lift him from the aisle wheelchair, into the aisle seat and then we both assisted in transferring him to the middle seat. And the entire plane got to watch us do this, lol.

Dear Son was fine until the plane started to move for take off. Then he got a little scared and looked like he was going to cry. We both held his hands and he seemed to hold on for dear life. This was unusual for Dear Son since he's usually a pretty brave boy and I've never really seen him be scared of anything. He's changed a little since his hospitalization in November though and isn't quite himself as much. I started talking to him about how exciting it was to fly and how he would love the take off. I told him that was my favorite part. I told him the pilot steps on the gas so the plane would go really fast and that I thought he would like it. I told him men really love this part and that a lot of the pilots were men. He listened intently and soon the plane started going faster and Dear Son's head went back into the seat. As soon as the plane took off, Dear Son had a big smile on his face and he really seemed to like it. He kept smiling after that and I continued to talk to him about the ride.

During the flight, the man who gave up his seat came back to our row to help his wife and kids. He had two special needs children, one had Down's syndrome and was a diabetic. That child ended up getting sick on the plane and throwing up. The other child had cerebral palsy but could talk. These parents had their hands full. We talked to them after the flight since we both had to wait for aisle wheelchairs to arrive. We had to wait for the entire plane to get off and then another twenty minutes or so for the aisle wheelchairs to arrive. United needs to put a system in place so that disabled people can get the aisle wheelchairs on time.
The plane ride went smoothly. Dear Son didn't go to the bathroom at the airport or on the airplane. I did put a few pads down on the seat, just in case, but we were very lucky. I managed to feed him his lunch on the airplane and gave his tube feedings via syringes. I had packed everything in a carry on bag for the feeding so it was very easy. Some people had suggested that I not feed Dear Son to keep him from urinating however I don't think that any of us would like to go on vacation and be hungry or not be able to go to the bathroom at the airport. I believe in treating Dear Son like I would like to be treated.

Dad and Dear Son at Orlando Airport.

Once we arrived in Orlando, we picked up the wheelchair van from Vacation Mobility*. He met us at the airport and wore a red derby hat so we could spot him easily. They are a gracious company and very friendly. They had contacted us two days prior to our trip to confirm. Since I don't have a wheelchair van, they needed to show us how to tie down Dear Son's wheelchair for transport. He instructed Dad on this procedure and we were off to the resort.

Dear Son checking out his new wheelchair van.

We arrived at the Give Kids the World Village. After check in, we went to our villa and were greeted with a bag full of presents for Dear Son. His favorite present was the stuffed Mickey Mouse. I told him this was the same Mickey Mouse he sees on t.v. on Saturday mornings. He seemed to get it then and really liked Mickey. It was one of his favorite gifts.

Lobby of Give Kids the World Village.

Dear Son arriving in the lobby.

Someone's always watching over you in the lobby!

Our villa was complete with a washer, dryer, full kitchen and whirlpool, which I loved. The washer and dryer made life easier for us since we often need to do a lot of laundry with Dear Son. The Make a Wish organization had also offered to provide all of our supplies at the villa so we wouldn't have to transport all of them. This was huge since the volume of supplies I would have had to pack would fill two suitcases. Most of the supplies were delivered but there were a few glitches. The hoyer lift wouldn't roll so it wasn't usable. The hospital bed was delivered however only the head and foot of the bed raised and lowered but the actual bed did not. This made diaper changes hard since it's tough to bend over. The medical company shorted us on a few of the supplies and had contacted me the week prior with difficulty in getting the formula and had me bring two days worth. Unfortuntately, the were late and it didn't arrive until the third day however I had brought extra formula just in case. None of this was Make a Wish's error since they everything was confirmed prior to our trip. I contacted MAW to let them know we didn't have all of the supplies and they fixed that promptly. We got by without using the hoyer lift all week as Dad did all of the lifting and most of the changing since I can't bend over very well after my back surgery.

We spent the rest of the day relaxing in the villa. We knew the trip would be a lot for Dear Son so we didn't plan anything for the first day. All in all, a great day and everything went pretty smoothly. We were thrilled to finally be on vacation.

Notes: *Vacation Mobility provides wheelchair accessible van rentals along with scooters and power chairs.

6 comments:

Michelle said...

Im so excited to see more. and, to be honest, a bit teary remembering just how beautiful that place and its people were.

Anne in NY said...

Hooray! I'm almost feeling like you're bringing us along with you on this trip. Can't wait to see the rest of what "we" did! :) Makes me admire the Make A Wish organization even more!!!!

"Lois Grebowski" said...

I learned something new today. how cool it is that there are companies like Vacation Mobility... That is such an awesome resource!

I would imagine the flying was nerve wracking for him at first. All the unknowns, but I bet he's now an "old pro" at that.

Anonymous said...

I'm so excited to finally see these pictures! Can't wait for the next lot.

Lori x

Tiffany C. said...

this was a beautiful story and my little sister has leukemia and so we are going to Florida in about 2 to 3 months and shes so excited and this will be our very first family vacation due to the fact that we can not afford to travel there's 11 of us so its hard but we are all excited and i just hope that everything is well keep me updated!!!
much love,
Tiffany

Thomas Wright said...

I agree, Lois! I think it is great that there are establishments and institutions that deeply care for people who have the same condition as this boy. They get to go out and have some vacation. And what’s good about this is they ensure that their guests are comfortable with the trip – and that includes providing wheelchair-accessible vehicles.

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