Reagan finished Week 2!! We're now halfway through the CIT program at UVA and I can finally navigate from Wal-Mart to the apartment without my GPS. The weather was much more agreeable this week and we are now moved into the apartments and able to leave some things there for next week. Although not as cozy at the Hampton Inn, it's nice to have somewhere to crash after a long day. We joke about how we walk up hill both ways to our therapy sessions (literally), but it's very conveniently located over the river and through the woods to the clinic. Deena and Tyler are in one apartment and Reagan and me are in another one around the corner. It was a little bit of dejavu from JMU listening to the CXS train passing through at all hours of the night. And my favorite quote from Reagan when I was giving her the tour of our new vacation destination was, "mom, that toilet is so little and cute!" No elongated seats in this bathroom! We have a living room, bedroom and bathroom with a refrigerator and microwave. It definitely makes our trip more affordable. Apparently all the furnishings are provided from donations from families who have used the apartments in the past. It's a little humbling to think how many families have stayed in these apartments traveling a similar journey. I spoke with a woman in Sterling last week who's granddaughter had brain surgery at UVA last month because her brain was fused to her skull and it had to be surgically separated. Until I had special children I had no idea how many special children there were in the world....As most parents feel with special needs kids, this week was another ride on new roller coaster. Day four was good, day five was exhausting, day six was good and exhausting.
Day 4
On Day 4 Reagan spent more time focusing on her left hand. The Kluge Children's Rehabilitation Center used to be affiliated with an onsite inpatient facility that housed children after hospitalization. Last year the University decided to discontinue the inpatient program and those rooms are now empty. Although funding for this facility has been reduced, it's easy to imagine how amazing it was at one time. There are both indoor and outdoor pools (now decommissioned), a gymnasium, a courtyard with a rehab greenhouse, wheelchair walk, swings and sandbox. It was such a beautiful day Tuesday so Reagan and Ms. Ruth repotted a plant from the greenhouse for Daddy. They also spent time putting spinners in the sandbox, pouring water into the sand buckets, and turning the kitchen table crank to raise and lower the height for lunch.
Day 5
Although we thought we may be able to spend time outside Wednesday, it turned out to be very cold. Reagan had a hard time falling asleep Tuesday night so Wednesday morning started out a little rough. She played a really neat Play Doh game where she had to mold teeth and put them in the monkey's mouth. She got to jump on the trampoline and we practiced throwing the big ball in the gym. She also practiced picking up different size balls in a water basin and guessed which ones would sink and which ones would float. One of Reagan's goals for this program is to be able to increase how well she can throw a ball with lefty. Most hemi's have a very hard time sending the signal from the brain to the hand to tell it when to release the ball. So it's very common for them to try to throw the ball but it drops at their feet. We've been working on this for the last year, but it's very frustrating for Reagan. Ms. Ruth sent the balls home with us Tuesday so we able to continue practicing in our apartment. I can't get over how much progress we've seen with this activity in the last two weeks.Day 6
After not getting much sleep the night before and getting the car packed to go home, we headed to our morning therapy session at 9am. Reagan had a great time washing the ducks and putting them in the bath, blowing bubbles with her new bubble blowing dog that we got on a shopping spree to Wal-Mart Wednesday night and riding the bike. Reagan tends to like more of the gross motor skill activities than the fine motor skills. So she likes PT
activities like t-ball and bikes much better than OT
activities like pincher grasp games. Most PT facilities have bikes for kids that velcro around the feet so they don't fall off the pedals. So although Reagan loves it at therapy, bike riding at home has been very frustrating because she can not hold enough pressure on the left handle to keep her bike straight on the sidewalk. We rode the halls in the clinic giving her enough width to correct her turns and get a lot of great practice. This is one of her developmental goals to grip the left handle bar. She is doing well with this task and hope it continues when the cast comes off. She rode all the way from the therapy room, down the hall to the elevator, down to the playroom on the first floor and back again. It was amazing to see her hold onto the handle bar with lefty! I have wondered whether this program would cause her to be more discouraged and point out her weaknesses, but this week again really built her confidence and helped her realize she CAN do things even though she often thinks she can't. The hardest part is getting her to work hard even when she is tired, especially with eating. There are many activities we do throughout the day that are therapeutic but she sees them as play. Unfortunately, eating is easily seen as "right" or "wrong" if the food goes in the mouth or if she drops it so her frustration level increases easily. I think the cutest thing I've heard her say all week was this morning when we were getting ready to put on her cast. She said, "hey mom, I was thinking maybe lefty needs a turn today. Let's put the cast on lefty today." I laughed and gave her a big hug realizing her wit is going to get her into trouble one day!Overall we had a good week. It has been a blessing to have Deena and Tyler to keep us company. We share our discouragements, we share even the tiny successes, and have an equally obsessive love for fountain soda. We laugh, we cry and most importantly we "just keep swimming, just keep swimming."
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