I’m finally home! But getting here and getting set up was a lot harder than I thought it was going to be.
On Friday at CHOP, we had to get a lot done before I could go home. My parents, nurses, physical therapist and I had already spent a lot of time figuring how we were going to get me into our car. My dad brought a big SUV, but I have this giant, heavy, metal and plastic brace on my leg – from my waist to my right foot -- that only bends a tiny bit at the hip and knee. If I couldn’t get into the car, we would have had to go back and forth to CHOP -- a two-hour drive -- in an ambulance until I got my brace off! Needless to say, my parents and I really wanted to find a way to get me in the car.
We finally figured out that the front passenger seat was a fit. From my wheel chair right next to the car, I had to stand on my left leg and, using my walker, pivot so my back was up against the front seat. Then with the front seat all the way back, I hoisted myself using my left leg on the running board and the handle next to the door. Once up on the seat, I had to scooch around a bit until I got into a position where my legs fit and I could close the door. I just fit! Then, my dad had to figure out how to pack all of my luggage, books, blankets, stuffed animals, plus balloons and gifts I had received, and the wheelchair, in the back of the SUV. (Hey, I’m a girl and my dad tells me I don’t travel light).
When got on the road Friday afternoon, I slept all the way home. The chemo that I had on Wednesday and Thursday (not to mention the prom) made me tired. When we got home, there was a banner over our front door that my friends had made and signed. They hung balloons all over the front of the house and on the back deck. My friend Shane’s parents had a ramp that they put on our front porch that made getting in the front door easy. My friend Grace and her mom came up the driveway right after we pulled in. My friends are awesome.
I can’t go up any stairs yet, and since my bedroom is on the second floor, my parents decided my temporary “bedroom” will be our family room on the first floor. They had to spend some time (okay, a lot of time) getting the hospital bed with the “trapeze” situated in the family room so I could get my wheelchair right up next to it to get in and out of bed. They also had to remove double doors into the family room because it turns out that my wheelchair is too wide for a regular door. (Which means my wheelchair will not fit through the bathroom doors, so they also had to make sure that there was enough room to put the commode next to the hospital bed.)
The bed is pretty comfortable and it’s cool being in the family room with the big TV. My mom sleeps in the room with me in case I need to get up in the middle of the night. Coco sleeps in here with us too.
It feels nice to be back home after almost two weeks at the hospital. On Friday, it was late in the afternoon by the time we got settled, so we had take-out Chinese food. On Saturday morning, I had pork roll and egg and cheese sandwich from my favorite diner. My dad grilled steaks and chicken for Sunday dinner (yum).
I have some physical therapy exercises to work on for the next few weeks to build up the strength in my leg. I have to go see Dr. Dormans on May 23rd so he can check out how my leg is coming along, and then back to chemo on Friday May 27th. Seven rounds to go!
A POSTSCRIPT FROM MOM:
As you can tell, even simple things, like clothing, are not so simple in a full-leg brace. Before we left the hospital, I surfed the Internet trying to find some “breakaway” pants, the kind with Velcro that athletes wear. I couldn’t find anything suitable. I thought, “Well, I guess she can go home in a hospital gown.”
Instead, a couple therapists went and got a pair of surgical “scrubs,” cut open the inseam of the legs, then punched holes in the fabric and laced it up. When we got home, Rachel’s principal, Melissa Wisk, pulled up. She said, “I can do better than that.” So she ran to Walmart and bought really big pajamas and sewed Velcro in the leg!
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