We left Richmond last night. I started packing on Friday. And then spent ALL day Saturday packing. The thing is that when you pack medical supplies and equipment, if something gets broken, you can't just go to CVS to pick up a new one. So, you have to pack more than one of something if you can't live without it. And now we've added The Vest to our stuff. Tom was not happy about it since it is another heavy piece of luggage (that you can't check because it's a machine that costs $16,000). But, I really think we are going to be thankful to have it. Already it has helped her secretions. After Saturday night sleeping without her normal humidification, her secretions were already thicker and stickier. But, after a few vest treatments combined with breathing treatments, they've already turned around.
Anyway, here's the final result...
Holy luggage! That's for three people, budgeting for a one week's stay. And keep in mind that I budgeted that Harlie will not be needing anything from us (since she'll be in the hospital) for a couple of days. My Mom and Dad came to our house and rode with us to the airport so they could take our car back home for us. That will save us loads of money in parking. Thank you Mom and Dad!
Soon after we arrived at the airport we heard from our friend, Carol, that her husband, Chris, was on our same flight to Boston. What luck! We had time for one beer and a lot of laughs before we had to board the plane.
Harlie took this photo...
Please keep Chris and his family in your thoughts and prayers as his mom (who lives in Boston and is fighting cancer) isn't doing well. You might remember that Chris came to see us when we were at Boston Children's this summer. We had to laugh that we were all flying to Boston, and all for not fun reasons.
Once we landed in Boston, Chris got us an Uber. It's kind of like a taxi, but you order it from your phone and the cars are really nice. I'm not sure if he specifically asked for a Suburban for us or not, but it was fitting considering all our luggage! I tried to take a photo of Tom and Chris pushing all our luggage through the airport, but it was too blurry. I don't know what we would have done without Chris! Thank you for the Uber and the help, Chris!
By the time we got to the hotel and unpacked and settled in, it was late. Harlie went to sleep and we stayed up and watched the baseball game. Go Boston! Hey, when in Rome!
This morning (Sunday) we slept in. All three of us. In fact, Harlie slept past 11 o'clock! Seriously, what seven year old sleeps past 11am? But we let her. We're counting it as vacation. As I was trying to wake Harlie (I figured 12 hours of sleep was enough, right?) I couldn't help but laugh at this...
Yes, we bring our own power strip with us. You only have to forget that once. Anyway, Harlie is so funny. She is AWFUL to wake in the morning. Seriously - mean and angry when I force her out of bed. I send her straight to the potty. And then she runs out with a smile, goofy and in a good mood. She is something. Here she is, just minutes out of bed, smiling, getting her first vest and breathing treatments of the day.
We were super lazy. And enjoyed it. But eventually we thought we should go somewhere and do something. We thought about taking her to the movies to see Cloudy with a Chance of Meatballs 2. But, after watching the trailer, and seeing how much food was involved, considering she doesn't eat any of it, I was afraid she just wouldn't get it. I told Tom my thoughts and he said, "Now there's something you probably don't hear everyday." I had her watch the trailer and then afterwards I said, "Harlie would you like to go see that?" And she said, "No." Okay, then. That solves it.
So, we went to look for a place to eat lunch. Maneuvering through the crowded sidewalks with her chair and the oxygen concentrator was a lot of work. And all the restaurants looked crowded, too. So, we went into Trader Joes and bought a few snacks (and a bottle of wine, of course) and then went to a deli for some take out sandwiches and headed back to the room for lunch. But, the wall of the deli was screaming for some photos.
She really cracks me up.
So, tomorrow we have to be at the hospital at 10 o'clock. And we have appointments through 4 o'clock. So, it will be a long day. Then we'll have Tuesday off. Not sure what we're going to do. Might venture to the aquarium. Since it's October, and it will be Tuesday, maybe it won't be crowded. We'll ask Harlie and see what she says. Then Wednesday is surgery day. And hopefully we'll be home soon after!
That's it for today. I will update again tomorrow night.
Thank you for all your thoughts and prayers this week! We couldn't do this without you!