Kennedy Krieger ~ Week 4, the Cleanse Continues

Off to Baltimore we go. Packing has become much more routine.  The problem with that is I have become more relaxed about reviewing the entire check list.  I've gotten smarter about what to pack and how much, but it's still a lot of work.  Each week I precut watermelon, pre bag the grapes, and pack as much food as will fit in the small fridge in the hotel room.  Luckily we have a free breakfast at the hotel but we try to always eat packed lunch.  Every few days I call the Ronald McDonald House to see if they have space for us, but to no avail.  It would definitely be much nicer to have a little more space and a larger refrigerator.  Not to mention a playroom.  We've gotten our groove, though, and after this week we only have one more!

Monday August 10th
On Monday we dropped Reagan off at therapy at 9am and then headed to Cole's therapy appointment.  He had a great session and I learned about some new tools that may be helpful for him.  The first is a scrunchy like wristband with a dangling dolphin. The concept is that by forcing fingers 4 and 5 to hold the dolphin, fingers 1-3 are more effective at holding the pencil/marker correctly.  VERY cool and works so well!

After lunch I took Cole to the GI, Dr. Louis-Jacques in Shady Grove, MD.  As mentioned in the previous post, he gave us a strict 3 day cleanse followed by a maintenance schedule.  After the GI appointment I picked up Reagan.  She was so excited about her new Spiderman tape for her cast and especially excited about crossing THREE days off on the calendar (Saturday, Sunday and Monday).  They made breadsticks and played some other games that made her EXTREMELY tired Monday afternoon.

Tuesday August 11th
After dropping Reagan off at therapy we headed to Target in Canton to get some "incentives" and then headed back to the hotel to start Cole's cleanse.  We lined up all 8-4 oz cups of Mirilax/Gatorade and got started.  It was a long, exhausting experience, but the goal was achieved.  After picking up Reagan from therapy we decided we needed some additional incentives since the candy and bananas were not working very well.  We took a trip to Toys R Us in Glen Burnie.

Wednesday August 12th

Wednesday started with waking up to Cole being COVERED in poop.  Apparently the cleanse was working.  I have to say I find the terminology quite an oxymoron.  There is NOTHING clean about pooping.  And yes, I get that his colon should be clean, but I can't SEE that.  Wow, I wasn't prepared for that at all….

After giving Cole a bath we dropped Reagan off at therapy we headed to the Neuro Opthalmology appointment at the Wilmer Eye Institute with Dr. Kraus.  As mentioned in that post, it was a good visit and although we were not able to get linked in to any new research, we did make another good connection.  Luckily they took us early because the appointment was rather lengthy and I needed to get back to the hotel to teach a remote session of the Project Management class for DISA.

On the way out of the appointment we walked through the original John's Hopkins Hospital building.  The architecture was absolutely beautiful with hardwood walls and stair rails and marble.  In the main lobby of the building was an extremely large statue of Jesus.  I absolutely LOVE that there hasn't been enough pressure to remove this statue.  There were many notes around the statute and it is apparently a well known location to find the family of patients praying and rubbing his toe.  Needless to say, we stopped and said a prayer and rubbed his toe.  I asked Cole to take a quick picture and I find it very cute that he posed just like Jesus - this was not prompted at all.  Very perceptive young man….

Wednesday was a big day for Reagan.  She had another day of therapy at the pool and then the CAST WAS OFF!  She was so excited to have righty back and was quick to remind me that she no longer needed help eating or brushing her teeth.  It was really nice having that independent girl back!


After finishing Cole's 8-4oz cups of Mirilax/Gatorade we decided to walk down to the Inner Harbor and rent a Dragon paddle boat.  Although rather hot, it was a fun time.  We ended our night at Cheesecake Factory to celebrate the cast coming off and Cole being done with his cleanse.

Thursday August 13th
Thursday Megan took the kids via shuttle to Reagan's appointment and then waited for the shuttle to come back to the hotel with Cole since I was working in Columbia.  Unfortunately he had a pretty rough night sleeping.  The ex-lax and Mirilax cocktails have definitely started to get things moving.  I have never been so embarrassed as having to explain to the front desk that the sheets would all need to be replaced…and quickly. And that was even WITH towels laying under him. Luckily our room has windows that actually open…and that we definitely took advantage of that!  Although he was sleeping through the experience, he absolutely needed to be woken up and bathed at 2:30am.  He slept on and off for the next 4 hours but was very tired.  So Megan shut the curtains and he slept for several hours.

I picked up Reagan from therapy after work and heard all about her busy day!  They played baseball, rode bikes, played volleyball and painted their clay pots from last week.  They also made paper mache rubber gloves.  Reagan was absolutely giggling when I went in to pick her up.  She and Jaryn have truly built a fun friendship and get along very well.  I definitely think it helps to have a "partner in crime".  It's cute to see them pick on each other.

Friday August 14th
Friday was like all others from the past three weeks.  I dropped Reagan off at therapy and then headed

back to the hotel to get the room packed up and get ready to head home.  We decided to take Cole to Port Discovery.  Since I purchased a membership several months ago it's free!  We had a great time, although Cole had a pretty significant blow out while we were there.  I was prepared with extra clothes and a bag, but it was so bad I was not able to salvage his shirt.  And hopefully I didn't traumatize the little camp girls in the bathroom watching poor Cole get stripped down and have a wipe down bath on the changing table.  Desperate times call for desperate measures right?! Wow.

Reagan had another great day at therapy and we got a long list of homework activities.  Because the cast is off, all the focus in therapy is on bimanual (or two handed) activities.  Cutting food is one that is very difficult.  You have to "stay in front of the fence so the dog doesn't bite you" - cute analogy to remind them not to put the knife behind the fork, only in front.  They also have to focus on getting their index finger out to provide the support needed to stabilize the food.  And yes, this is on her homework.  They also made tie died shirts and made s'mores !  They apparently took tin foil and laid the chocolate under plastic to melt it.  Pretty cool!  After therapy we headed for home.  Luckily we made it in under 3 hours which was lucky given the back up on 495 from one lane being shut down on the American Legion Bridge.

I thought it was interesting when we went to bed tonight that Reagan asked me if I have trouble turning my hand over.  I cautiously said no and asked if she noticed that the other kids at therapy have trouble.  She said there is a therapist who does.  She seemed very interested that there was an adult with this challenge.  Although we've done this therapy 3 times before, it has always been private/individual sessions.  This time she is with Jaryn, but there are also 3 or 4 other kids at the facility in the kitchen and hallways and sharing the gym who also have similar challenges.  One little boy has a prosthetic leg.  I think it has been very enlightening for her to see there are other kids like her.  I could tell she was thinking about this and I hope we can work through her feelings as she thinks more about it.

After what feels like a very long week and even longer month, we are all happy to be home.  I didn't waste any time getting unpacked and getting the soiled laundry cleaned.  Luckily I was able to salvage everything that was hit by the cleanse except the one shirt that had to perish at the museum today.  We have a very busy weekend planned to celebrate my parents' 50th wedding anniversary.  My father is one of 8 brothers and sisters and my mother is one of 5 brother and sisters.  Many of my aunts/uncles, cousins and their kids have been able to travel from far away to help us celebrate.  Not sure how we'll squeeze in Reagan's homework, but we'll try!  We're off to Baltimore again Monday for our last week!