Constraint Therapy at Kennedy Krieger ~ Cast is on!

Sorry for the long post - I promise they will be less detailed next week!

Day 1 ~ Monday, July 20th
Well we started our adventure bright and early Monday morning with a 7am departure.  We arrived at the hospital with plenty of time before Cole's 10am Occupational Therapy appointment with Emily.  We had a great meeting with her and he spent most of his session this week getting to know her and having her learn where they should focus for the next 5 weeks.  Given the short timeframe, she recommended we choose a very focused goal.  My recommendation was to focus on writing since he struggles being able to put enough pressure and actuation on a writing utensil and I know that will be very important next year in school.  He responded to her very well and we look forward to seeing her every Monday at 10am.  We were rather surprised that parking was $12 for our 1 hour and 20 min stay but decided we will do some research on less expensive alternatives.

After therapy we went to the hotel to see if our room was available.  Unfortunately it was not ready, and they had not connected with Ronald McDonald House yet to get authorization for the $65 RMH rate.  This has been a week long saga of communication hand-offs trying to get this coordinated.  So off to lunch we went at the Inner Harbor.  We parked at the mall and walked over to Panera hoping to spend the afternoon at the Inner Harbor but it was oppressively hot.  So we decided to go back to the
hotel and wait for our room.  Another $14 in parking and we headed to the hotel.  Luckily our room was ready and we check-in.  Although I knew it was $32 to valet park, I thought the $16 self park option was on property…nope…it's down the street AND you pay another $16 every time you need to take your car out.  So it'll be $32 just to take Reagan to therapy and back.  I am trying to coordinate a monthly rate, but currently the offer is $450 for the month for parking.  Needless to say I'm asking them to reconsider given we are here for a hospital stay.

After lunch we let the kids have some time at the pool before heading to Little Italy for dinner.  Not only were we excited about pasta, I was excited about not spending any more money on parking!  We had a great dinner at Amicci's and headed back to the hotel for an early bedtime.  The kids were in bed and lights out by 7:50pm to get us ready for Day 1 of Constraint Camp at Kennedy Krieger!

Day 2 ~ Tuesday, July 21st

After getting the kids in bed super early I thought Tuesday morning would be a BREEZE!  Unfortunately Cole decided to wake up at 2am and didn't go back to sleep until just before 5am.  Given there were three of us in the bed, I didn't get much sleep.  When the alarm went off at 7am I thought it was a bad dream.  But we managed to get out the door on time and had a quick breakfast at the hotel.  We arrived at Kennedy Krieger with plenty of time, parked in the FREE PARKING garage and were SO excited about that!  Although Reagan wasn't nervous at all, I was feeling a little apprehensive.  I know all too well that the attitude and personality of all the staff we meet will make or break Reagan's perspective of this entire experience.  My normally outgoing Reagan was definitely a little shy but she quickly warmed up when she met her new OT.  She ran off immediately to have her "before" video taken so show her performance and capabilities across multiple different activities.  While she was meeting with the OT I met with the intake manager to fill out consent forms, then the Director of the program, the Nurse Manager, the OT, and then the PT (while Reagan was with the OT getting her cast made) to answer questions about her history, capabilities, concerns and goals for the next 5 weeks.

I can't say enough amazing things about the team there.  At one point Reagan and I were waiting for them to take her vitals and saw a young woman in a wheel chair heading down the hall with a young man with very thick glasses and orthotics on both legs much like Reagan used to wear.  He was pushing a cart of snacks.  I quickly asked Reagan if she wanted something when I realized what they were doing.  They were teaching these two math and money!  I could have cried.  It was so fun to see how proud the two young people were telling us all about the things they had to sell and how much each thing cost.  Reagan chose a very small bag of carrots for $1 and after giving them a $5 bill they both focused very hard on their task and although they didn't get it right, their therapists were very supportive and helped them figure out my change.  Wow, what a great program….I'm impressed already.

We were done at the hospital by noon Tuesday and headed out to meet Megan and Cole for one of our very few free afternoons.  We decided to meet them at the Inner Harbor - they went to Port Discovery while we were at the hospital and we were all ready for lunch.  After a quick stop at Pot Belly to get out of the heat we walk around the old ships and then headed to the B&O Train Museum.  We didn't really know what to expect, but it was VERY cool.  Reagan had no interest in going but Cole was super excited.  When we left I asked Reagan if she had fun and she said, "well, I liked it better than I thought I would."  I consider that a win!  We were able to walk on several different types of trains (coal train, Post Office train, passenger train, pioneer train) in addition to ride a small train and see a small train village.  Given it was super hot we decided to head back to the hotel pool and then have dinner.  Unfortunately the pool was closed for maintenance so the kids had a little down time and then we decided to eat in the hotel and get to bed early since we didn't sleep well the night before.


Day 3 ~ Wednesday, July 22nd
Day 3 started at 6am when Reagan fell off the couch and decided it was morning and we should all get up.  It was her first day wearing the cast but it was a half day of therapy since it was Wednesday.  Although she met one of her camp friends, Jaren, on Tuesday, it ends up the other little girl withdrew from camp last minute.  And because I am not invited to stay for therapy, I am not able to get many pictures of the types of activities they do.  Luckily Reagan is getting old enough that she can explain many of her activities and tell me about her day.

Today Reagan had her cast put on and it will stay on for a full week.  As you can see from her picture, she chose the purple and blue leopard duck tape and convinced the OT to draw pink and green hearts all over her cast.  They did some outdoor activities on the hospital playground, did some indoor therapy and also met one of the therapy dogs.  Although she was in a good mood when we left, she went down hill quickly once we got in the car.  For those who know Reagan, she gets hot very easily and if given the choice, would wear tank tops all winter.  She also hates to be constrained by anything…like sweater, a life vest…or a cast.  We planned to go to a local pool after therapy and headed there from the hospital.  She was in a full melt down in the car, screaming "get this cast off me right now" and beating it against the seat.  I pulled over twice to try to calm her down, but it was a hot day and she was inconsolable for a good 30 minutes.  She was also frustrated that she couldn't straighten her arm.  I tried to talk to her as I was driving explaining that crying so hysterically would make it worse and that she needed to calm down.  To which she said, "you're lying, I calmed down and it isn't better." A crushing moment as a mom when you can't fix it...

Unfortunately we arrived at the first pool at Roosevelt Park and there was no pool.  We arrived at the back up pool in Patterson Park and it was extremely CROWDED.  Easily 300 people.  And it was slightly bizarre…for example, there were no chairs and you couldn't wear clothes to enter the pool area. There was a guard (bouncer?) stopping anyone who even had on a pool cover up.  But it was $8 for all four of us to get in - best deal we've had all week!  We stayed for a little over an hour and Reagan was beat so we headed back to the hotel, had a quiet evening with left over pasta and called it a night.

I will say, it's amazing to watch Reagan's transformation when she's in "constraint mode".  She really puts her heart into using her left hand….even though it's super hard.  She's unable to push an elevator button, but she did get pretty good at fast forwarding the Netflix movie on the iPad with her left hand last night.  She was even able to eat her macaroni and cheese almost by herself!  She also electively ate strawberries and blueberries with lefty.  This is a HUGE improvement from our last constraint program.  I had forgotten how many things are really hard though…like scratching an itch.  Her left hand is not able to scratch anything regardless of location so I'm now in charge of that for the next four weeks.  And the big news for the day….drum roll please….after 3 days of numerous phone calls I was able to secure a monthly parking pass at the hotel for the low, low rate of $250 for the month.  That doesn't sound good, but it's better than $32 per night for 5 weeks!  Yikes…well glad that's figured out.