We have so many people to thank for Cammy's flawless first flight. Thank you Children's Flight of Hope of providing 2 Southwest tickets for Cammy and I to fly to Boston to participate in the IGF-1 clinical trial. All the families like mine appreciate organizations like yours who realize the financial strains of participating in clinical trials or flying all over to find treatment for your child. Thank you Southwest for your outstanding customer service. Thank you TSA for your incredible sensitivity and kindness with Cammy.
We checked before our trip to see if Cammy needed a carseat in taxis. We were happy to hear that we didn't have to lug a carseat. We could just hold her buckled up in the taxis.
The Southwest agent behind the baggage check was very kind and outgoing. After she checked our bags, she jumped over the counter and walked us through security. She explained everything they were going to check for, showed us who to give Cammy's placebo/IGF-1 vials and doctor's note to carry medicine. She then walked us to the gate to ensure our pre-boarding. While we shared about Cammy and the clinical trial, Nica shared with us that her boyfriend had a brain tumor. Everyone has a story.
|Nica, our wonderfully helpful Southwest agent|
I had to give Cammy an injection right before boarding. She took it like a champ as usual.
We were first to board. We asked if they could keep her wheelchair in tact, which they did because it is small. Otherwise, we would have had to remove 2 parts, fold it up and risk damage.
Grandpa B was elated to get the first row for his long legs... and for Cammy's needs, of course. We used the CARES seatbelt to make Cammy more secure and comfortable in the seat. We tucked blankets on each side of her so she wouldn't wiggle around. Once she had her headphones and ipad on, she was ready. Since she cannot chew gum or suck on a sucker, we had to give her juice during the take off and landings to help her with her ear popping. She did not make a peep during take off or landing. The flight attendants kept a watchful eye on us in case we needed anything. We handed them Cammy's awareness cards and they came over a few times to learn more.
One thing I was nervous of happening, happened. Cammy needed to go to the bathroom. One person in those airplane bathrooms is tight, let alone two. The flight attendance asked if we needed the changing table down. Who knew there was a changing table in those bathrooms! As I mentioned in a previous post, Cammy does go on the potty. I was sweating crammed in that little bathroom squatting to hold her. Then, putting her diaper on was another challenge. The changing table comes down over the potty. Cammy is way too long to be on that changing table, so her head was jammed sideways. Good grief. But we survived our first airline bathroom.
When we landed, got our bags and went to the taxi line to request a handicap accessible taxi. It came just as quick as any taxi. Cammy felt like such a big girl sitting in the taxi without a carseat, buckled up. She proudly smiled then quickly fell asleep.
When checking in, another woman behind the counter, Caroline, spotted us and said "CAMMY! Where's your little sister?" She remembered us! We got our requests of a refrigerator for Cammy's medicine and a microwave for Cammy's food and extra bed in our room.
We unpacked then headed back down for the shuttle. Caroline was our shuttle driver, she was doing overtime. We were lucky to have her because she told us about the CT2 bus that stops right in front of our Hyatt and takes us to Boston Children's Hospital for $1.60 per person using the Charlie card. She handed over her Charlie card, told us there's some money on there, that she just got a new one. The shuttle can take you to 5 different spots, which all have include train stops. We had planned to take the redline to the North End, but since she wasn't busy, she took us all the way to the North End.
Grandpa B was excited to see a couple stops along the Freedom Trail. It was a little trickier than we thought finding a place to eat. It seems as though Boston is grandfathered into not having to make places handicap accessible. We checked several restaurants, but most had several steps to climb or narrow isles. We finally found a place called Lo Conte's that was easily accessible. When we walk/rolled in, Bocceli was playing so we knew this was the place to eat.
After dinner, we waited 15 minutes in line at Mike's for cannolis. We took the green line to the Fine Arts building. The train was jammed packed. I was nervous we were wedged in too far to be able to exit. But everyone was extremely kind, bending over backwards to make sure Cammy had enough room and even jumped off the train so we could exit. The hotel shuttle picked us up from the Fine Art building.
Cammy had fallen asleep, so we decided to save the peanut butter and chocolate chip cannolis for the next night. She woke up when I changed her into her pajamas and laid her in bed. She had a big smile laying down, going to bed.
I had to set an alarm to give her an injection at midnight. We had to adjust injection times so that the team could give her one during the autonomic testing to see any reactions. Cammy did not wake up to the alarm or the shot. She must have been in a very deep sleep because she usually wakes easily.
She had a laughing spell at 2am. Girls with Rett can have these unexplainable laughing parties in the middle of the night. Her eyes were closed this time, just giggling away for 10 minutes. These fits always make me smile. It's much better to be woken up from these then screaming and crying!