Made of Gray

Hello Boston - Hello Again

Raising the Rare Child, Traveling w/ DisabilitesHolly D Gray6 Comments

We made it to a rainy Boston on Sunday morning. Our flight left at 7am and we are lucky that we made it out on time because delays quickly followed throughout the day. Caleigh did great on the plane. She watched Monsters Inc. and Tinkerbell and the Neverbeast to pass the time. 

I had contacted TSA and American Airlines before our flight and they were nothing but accommodating. We had to find a baggage check counter, that had a supervisor, so that we could check Caleigh's 95lb medical supply suitcase for free, but other than that AA was great. TSA was even nicer. I had a specific TSA staff cell phone number that I called when we arrived. He met us and pushed us through the check point with no issues. They claimed that something in Caleigh's medicine bag set off an alert so they had to do a private check on one of us. I opted to be the chosen one. Nothing like a frisk down at 7am to get you going for the day. With Caleigh though, they were wonderful and totally compassionate. 

We explained that 5 hours of flying patience gets us to Boston faster than 3 days of patient driving. Caleigh understood, but still told us that she didn't like to fly. I'm hoping our trip home goes smoothly as well. 

The family housing that we are staying in is $30 a day which is truly a blessing. The house is gorgeous and has 22 family rooms. The hotels here are so expensive especially if there is a game or conference in town. There is a family having to move out this morning, because they have a week until their daughter's surgery. You can't stay in the house unless your have appointments scheduled and they don't. They were calling around to see if they can find a place to stay. The only hotel they found, that wasn't full, was a 2 star for $995 a night. It's just insane. I'm grateful that we were able to get a room for our week here. I'm trying to not think about us being here and figuring this out for over a month when C has her surgery. The added stress of finding a decent, close place to stay can be overwhelming. 

Yesterday we started our Boston journey with a contrast barium enema. Caleigh did great with the actual imaging. She always feels pretty terrible after having it done. It cleans her out and she doesn't seem to keep anything in for very long. 

This time though she wanted to go to the park. She seemed ok as we were leaving the hospital so we jumped on the green line train and went to the Boston Commons and Gardens. It really is a beautiful place. We laid in the grass and rested, ate food from trucks and took it easy all afternoon. 

By the time we got up from our people watching spot, Caleigh wasn't feeling too great. Unfortunately we had a long haul back to the house. Even more so we jumped on the wrong train and had to do some unexpected walking to finish our evening. 

After some serious restroom visits, and finally turning off her feeds to just rest her tummy around 12:30am; we all slept for a good 6 hours. 

This morning we have taken it easy. We're watching High School Musical in the playroom and Eric is cooking lunch. We will be headed to our next appointment with Endocrinology in about an hour or so.

It's supposed to rain heavily this afternoon so I'm hoping we make it back from our walk to the hospital before it starts really coming down. It's already raining lightly. Thank you to everyone for your continued support and prayers. We can definitely feel them making our days easier. 


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