Kennedy Krieger and National Federation for the Blind (NFB) ~ Week 2

Wow, what a crazy week that FLEW by.  We are all happy to be back in our beds at home for some R&R after a long week.  Here's a recap of our week…

Monday, July 27th
Reagan went to therapy at the regular time Monday and had the entire therapy team to her self! Jaryn
wasn't able to attend so that means Reagan was EXTRA tired because she had all the attention all day.  She also came home with a book that she and her OT, Nicole, made on Monday.  She had homework that we needed to complete over the weekend that included a paragraph at the bottom about how I thought she was progressing and any comments on her mood/behavior related to the program.  I mentioned she was frustrated that she couldn't be as independent as she was before the cast.  Well the book they made was SO AMAZING! It has her name on the front with a big heart.  Then the first page she shared information about what would be hard with the cast on.  The second page outlined what she will need help with because she has the cast.  The third page outlines what she will be able to do better once the cast is off because she is making lefty stronger.  The fourth page starts a daily journal where she can note the things she thinks she did really well that day.  I absolutely love this idea because when she gets frustrated we can read through the book and have a little reminder of our goals.  It also allows us to spend time each night reflecting on what she did well that day instead of getting caught up on what she can't do as well.  We have used this every day to journal.

While Reagan was at therapy we went the Baltimore Zoo.  We had a great time and I posted information about that in my previous post.  As I mentioned, the $11M penguin tank was very cool.  You could watch them from outside (above water) or from inside (under water).  It was later Monday afternoon that we took Cole to the ER at John's Hopkins and he was admitted for head aches, vomiting and concern for a shunt malfunction.

Tuesday, July 28th
We spent the majority of the day Tuesday at the hospital with Cole.  Once discharged we went to pick Reagan up from therapy.  Tuesday they did a neat art project where she had to squeeze eye droppers with color die and oil to make a picture.  They also experimented with holding a tray and tilting it different directions to get the die/oil combination to run across the paper.  Both were super difficult, but it was a fun experiment.  They also made playdoh on Tuesday.  Honestly we drove straight to get her after being discharged from the hospital with Cole so that is all I remember from the debrief at the end of the day…sorry I don't have more.

Wednesday, July 29th

On Wednesday I dropped Reagan off for therapy at the aquatic center at Kenned Krieger.  Not only did they play games in the pool, but therapy also included self care.  It is very difficult for Reagan to bathe her right side and to wash and brush her hair with one hand.  So they worked on bathing and dressing after swimming to strengthen her left hand to do those activities.  The pool they have is SO COOL!  It has a moveable floor that allows the therapist to modify the depth of the pool (by moving the floor up and down) based on the height of the kids in the therapy session and what they are trying to accomplish.  They also played Connect Four, although she was very upset that Jaryn always wins.  Looks like we may need to practice this over the weekend!  Competitive?  Me? No way…

Since therapy on Wednesday is only 1/2 day, we decided to head to the Maryland Science Center and Planetarium after therapy.  I wasn't sure how much would be age appropriate for them, but we had a great time!  The presentation on Pluto in the Planetarium was excellent and very informative.  Given it was a dark room and had well lit stars/planets, Cole was able to watch the entire show.  The dinosaur exhibit was very cool and the bed of nails that Reagan laid on was intriguing!  The center is definitely geared toward slightly older kids, but we had a great time and will definitely be back.

Thursday, July 30th
Thursday was a busy day!  We dropped Reagan off at 9am and ran by the pharmacy to pick up the magnesium citrate that the pediatrician said we need for Cole. Then we had an appointment at the National Federation of the Blind to learn more about what technology is available for Cole.  Our visit, while insightful, was very difficult.  Their recommendation is to teach him braille almost exclusively since learning print is much easier and could be picked up later.  There are a lot of very cool technologies such the Braille Note by HumanWare or the TOPAZ by Freedom Scientific which has a four hour battery life.  One recommendation that they did suggest was having a National Reading Media Assessment to determine not only how well he reads but also what type of learner he is (visual, auditory, etc).  I made some amazing connections and learned about some great parent groups.  I also learned about a Braille Enrichment Literacy and Learning (BELL) program for learning braille.  They run this program for 2 weeks every summer and have a location in Arlington.  It may be something we will consider for next summer.  Unfortunately we missed the one this summer.  It was a great visit, but truthfully I'm a little overwhelmed with the sheer volume of new information that needs to be considered and the big decisions that need to be made.  I purchased several books and plan to start reading them in preparation for meetings with the school that will need to be scheduled in September.

After the visit with the NFB we headed back to the hotel to get Cole started on Operation Clean Out.  We were anxious to get this started in the hopes that we would be able to make it to his 2:30pm Occupational Therapy session with Emily.  After dropping off Cole we went to pick up Reagan.  She had a great day of therapy.  They went duck pin bowling, made beaded sun catchers and played games. After getting Reagan we headed back to pick up Cole and then headed back to the hotel to finish Operation Clean Out.

Friday, July 31st
I can't believe it's the last day of July!  Wow, where has summer gone?  Well our last day is always a little more hectic trying to get the room packed and ready to head home.  With the added stress of a 4.5 YO shunted little boy who hasn't pooped since we left the hospital, the tension was high.  We were able to get 3/4 of the bottle of magnesium citrate in him the day before and decided to get back on the Mirilax regimen Friday to ensure we could keep up with the schedule.  So we stayed in the hotel until checkout, walked around a little downtown and then headed to pick Reagan up at therapy.  She had another great day.  Today they made bead necklaces and played Topple.  As you can tell, as the week goes on I learn less and less about what they do during the day.  But as tired as she is when she comes home, I know they've been busy.  But to end week two with a smile on her face is priceless!

She's now half way through the cast part of therapy and she's counting down the days…literally.  Overall it's going very well, although our homework got longer for this weekend.  No rest for the weary!  Unfortunately Cole isn't making very much progress on Operation Clean Out.  We have two more days of the higher Mirilax dose and hope we start to see relief by Monday.  I was able to make a neurosurgery appointment for next Friday to follow up and review the MRI/x-ray results with our neurosurgeon.  Apparently the stage coach will not be able to reach their office before next Friday so although millions of dollars have been invested in Electronic Medical Records, I will be tracking down the medical records office in the basement of some building at Hopkins on Monday so I can hand carry the CD to the doctor to review…while I'm sitting in the room.  Archaic and inefficient don't come close to describing my feelings of this process.  Luckily I am "living" in Baltimore so it won't be too problematic to try to pick up.

Back to the Emergency Room we go...

Week 2 of Reagan's Constraint Therapy at Kennedy Krieger was off to a

good start Monday morning
July 27th with a 6:30am departure to Baltimore.  We dropped her off and headed to the Baltimore Zoo.  Overall we had a great time at the zoo and I was very impressed by the exhibits there.  The penguins were amazing and we were able to get very close to a lot of the large animals.

About 30 minutes after we got there, though, Cole started complaining of head aches.  He ended up falling asleep on my shoulder and woke up feeling better.  We walk around a little longer and then started getting another head ache so we headed for the car.  Unfortunately, we've been tracking these symptoms since January 9th when this all started.  He had 4 episodes in February, one in June and now 4 in July.  All symptoms include complaints of a head ache, crying, asking for water and trying to pop his ears (trying to release the pressure).  Of those 10 episodes four also included vomiting.

I was on the phone with the neurosurgeon after the second episode on Monday and when the third started I decided to head to the ER.  Unfortunately just as we pulled up he threw up all over my back seat.  I ran in and was immediately brought to a room.  After retelling his entire NICU journey FOUR TIMES and the history of these episodes from January FOUR TIMES they ordered an x-ray and MRI to see if there was a shunt malfunction.  Cole did GREAT for both tests.  He is highly sensitive to noise so I was very worried they were going to have to anesthetize him for the MRI.  But they let me lay over his legs and go into the machine with him.  He also had a head set and ear plugs which helped a lot.

Long story short, the shunt series (x-ray) confirmed there were no cracks or occlusions in the catheter leading into the shunt valve or from the valve into the brain.  The MRI showed that his ventricles were not enlarged.  And although they don't have anything to compare this scan too (since those records are at Children's National) the vents were super small.  This leads us to believe that the issue is not the shunt hardware.  With that said, the x-ray did show that Cole has a severely compacted colon and backed up intestines.  Apparently so constipated that the theory is that the bowel is pushing against the abdomen and preventing the shunt from draining correctly.  So when the shunt can't drain properly it  puts pressure on the brain causing a head ache.  If the head ache is severe, he then vomits which releases the pressure and makes the head ache go away.

Cole was definitely a trooper.  It is so hard to see him go from his normal, happy self to being unable to lift his head from my shoulder and moaning in pain from the head ache.  But luckily all these episodes generally resolve in about an hour. The longest one was Monday which started at about 4pm when he woke up from a nap with a head ache until about 9pm that night.  Given he is feeling well between episodes (and we haven't had another one since Monday night) he had fun visiting with Chloe, the therapy dog.  He also visited with two clowns, Dr. Boots and his assistant.  They were absolutely hysterical and Cole had fun popping their bubbles and joking with them.  The hospital also had a great Child Life specialist who brought him toys in the ER and once we were admitted they had a great playroom on the floor where he could find new toys to entertain him.

Ultimately they decided to give Cole and enima and send us home Tuesday afternoon with a regimen of strict Mirilax for the next 6 months.  We will follow-up with his neurosurgeon and determine if further testing is necessary.  After speaking with the pediatrician today, however, she doesn't think the Mirilax is aggressive enough and has recommended magnesium citrate.  I asked the Pediatrician in the hospital about that but he said it wasn't necessary since our situation wasn't really an emergency.  After reviewing the X-rays, however, our pediatrician said it really isn't a good idea to wait a week for the Mirilax to kick in.  She is of ht opinion that vomiting because his shunt isn't draining definitely constitutes a more aggressive plan.  So tomorrow we will start a cleansing process.  Unfortunately we have an appointment at the National Federation of the Blind at 9:30am and Cole has therapy at 2:30pm so it should be interesting to see how we can make all that work.  I truly have no idea what to expect.

Only time will tell how this will resolve.  Hopefully the steps we are taking will help and we won't continue to see the symptoms.  I can't thank everyone enough for all their prayers and offers to help.  We definitely have the best support system and it truly makes all the difference in the world.  Let's hope the rest of our week is less eventful!

Kennedy Krieger ~ Week 1 is DONE!

Day 4 ~ Thursday, July 23rd

After we dropped Reagan off at therapy we decided to walk around the John's Hopkins Campus.  It is definitely much larger than I realized and some of the architecture is absolutely beautiful!  I've included a picture from the hospital built in 1889.

Today was Reagan's first full day in therapy (aka camp) and it definitely exhausted her!  I heard about a lot of fun things they did today when I picked her up.  This included riding bikes outside, playing X-Box Volleyball, playing Candyland and Connect Four.  They also decorated visors for their field trip to mini-golf tomorrow.  It's important to remember, for everything she is doing, it's all with her left hand since her right is in a cast.  Each movement for her takes extra time because she has to focus so intently on it.  Overall it was a good day, although she did get hit in the forehead by her friend Jaryn.  And although it was an accident, that cast material left a nice crosshatch red spot on her forehead!  The day before she got angry with Cole and hit him in the forehead.  After she explained what happened with Jaryn she said, "now I know how Cole feels."  Yup...

After therapy I promised Reagan some pool time.  Unfortunately given we're in a 37 story hotel the sun is mostly behind the building in the late afternoon.  Given the pool was just refilled Tuesday, the water is pretty cold when there wasn't much sunshine.  We took a quick dip and then headed to the room for movie night and Chinese delivery.  Kids were in bed just after 8pm and we're looking forward to a LONG night of sleep!

The day ended very well and Reagan was in good spirits.  And as you can tell from the picture, Reagan was able to successfully push the elevator button!  It's still a lot of work, but she has been able to get enough pressure in her thumb that it doesn't collapse (hyperextend).  She is very excited to show off her new trick!

Day 5 ~ Friday, July 24th

Our last day of week one!  After I dropped Reagan off at therapy I headed back to the hotel and we got the room packed up.  We then decided to walk around downtown while we waited for Reagan to finish for the day. We found a diamond in the rough! I had no idea the first Catholic Basilica in the United States was in walking distance from our hotel! Wow, what a beautiful church!

After loading our bags in the car we headed to the inner harbor to walk around and get some fresh air.  Cole was pretty excited to meet "the real Spiderman"!  Apparently this weekend is the Otakon Convention which is the largest East Coast comic book conference.   It was AMAZING how many people convened in Baltimore dressed in costume.  After walking around for a few hours we headed to the hospital to pick Reagan up and get on the road home.  She had a good day but was very tired.  They played games in the morning and then headed out on a field trip to play mini golf after lunch.  Unfortunately when we got in the car she was exhausted and rather frustrated.  I'm finding that she holds it together at therapy and then just needs to release her frustration when we get in the car.  She eventually works through it, but it's hard when I feel like I can fix it.  

Overall it was a great week, but I continue to find it intriguing how each round of constraint is so very different (age 3, 4, 5 and now 6).  She is still motivated by doing things with her left hand and is very proud of what she can do.  As shown in this picture, she can now support her weight on her left hand even while leaning back.  But this time around she is able to see her challenges so much more than in the past, mostly because she is much more independent now than last August.  With the cast, she can't get dressed, can't brush her teeth and can't eat by herself.  She made comments during kindergarten last year about "why don't other kids have trouble with their left hand".  So she has known lefty has trouble and we've worked through those feelings, but yesterday she kept saying, "lefty doesn't do anything right" and "lefty doesn't listen to anything I ask him to do" and "before I had the cast I didn't need help."  I know that this experience is making her realize how hard she has to work, but I have to believe that long term it is giving her the opportunity to build up strength in that hand.  As always, struggle knowing what opportunities to provide her and how to help her work through them.  I'm praying for guidance to help her work through this and come out the other side realizing how blessed she is.

One pretty big update that I haven't shared from this week is regarding the tightness in Reagan's leg.  As you may remember, the Physiatrist and PT did not agree on a brace and we ultimately decided we should take some time off and see how she does.  The PT at Kennedy Krieger…without hesitation…asked why we weren't using one.  When I told her, she said she completely disagrees and that Reagan is very tight and should go back in a brace.  She is recommending a hinged brace which is, of course, big and bulky.  She said we can also consider the Bioness electrical stimulation cuff, but that she needs to be in something.  Truthfully my heart just sank.  I was feeling so positive about having that behind us.  We will need to take this advice to the Physiatrist and see what she thinks.  But for now we are going to enjoy our weekend at home and some good quality time with Daddy.

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.