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!

Update on Cole's progress ~ Appointment with the Neuro Opthalmologist

One of the recommendations the neurosurgeon made after our appointment last week was to make an appointment with an ophthalmologist to confirm there is no pressure on his brain.  One way this can be tested is to look at his optic nerves through an eye exam.  I had already made an appointment with a neuro ophthalmologist at John's Hopkins in the hope of getting connected with recent research being done on optic nerve regenerations.  So we met with Dr. Kraus today and Cole and I absolutely LOVED her.

She had a great bed side manner and worked very well with Cole.  She teased him about looking into his eyes with a special machine to see when he last ate ice cream.  Cole was very excited to see how this would work!

She was very patient with all my questions.

1. The first was regarding new information that I recently learned about a possible risk of developing glaucoma which could cause blindness.  She said that although this is a possibility, he is not at a higher risk for it.  
2. My next question was about his increased risk for retinal detachment later in life because he had Retinopathy of Prematurity.  Although she confirmed that he is at a higher risk than other children, she said that they essentially "cemented" the retinas when he had his laser surgery and the hope is that this will be enough to keep them attached.  
3. I also asked her about whether Cole would be a good candidate for Prisms - a special type of glasses that could help him.  She said that she didn't think they were necessary.  If anything, he may need surgery later to correct his nystagmus.
4. I also asked her opinion about getting a walking cane and braille.  She said that she doesn't think he needs a cane but we would know better based on how he's navigating his environment.  Unfortunately we had an issue yesterday where he ran toward a yellow race car that was inside the mall that had a railing all the way around it to prevent people from touching it.  He was running so fast he didn't see it and ran right into the bar and fell.  He recovered well, but it is always heartbreaking when I can't get there fast enough to stop him from getting hurt.  Regarding  Braille, she said she agrees that he needs to learn it. Although she feels his vision is relatively stable, she said it would be helpful for him.  Although I was disappointed to hear this, we had a great conversation about how it could be incorporated into school.  So instead of him learning all his lessons in Braille, he would learn Braille almost like learning a second language.  We will need to talk this over with his vision specialist at school and his low vision specialist, but I'm feeling a little better about a possible path.
5. I also asked her to look at the optic nerves and see if they showed pressure on the brain which may indicate shunt issues. Luckily she said no!
6. Most importantly I asked about the optic nerve research program. Unfortunately he is not a candidate since it is being done only with adults.  However, she said that there is hope that new information will be available over the next few years that could benefit the pediatric community.
7. Another conversation we had was regarding his visual acuity.  We noticed that he would say he can't seem something but when pushed for a reward he all of a sudden was able to see it.  This seriously makes me question whether we have an accurate measure of his capabilities.  Although it is frustrating that he would just say he can't see it when he can, I love the idea that he may see more than previously thought based on the Low Vision exam.  The doctor said there is an exam called a Visually Evoked Potential where they place electrodes on his head and measure the brain activity when given visual stimulus.  Although not something I think we need to do now, it's nice to know the test is available if we ever need it.

Overall we had a great appointment and she asked us to follow up in 6 months.  We will need to determine if we decide to follow up but I expect we will probably continue with our current ophthalmologist.  Although very disappointed Cole is not a candidate for any follow along study, I feel a little more at ease with the thought of adding Braille to Cole's tool box, rather than having it become a way of life.  Time will tell whether that is the direction we take and whether that's a good choice.

Update on Cole's progress ~ Appointment with the GI

After much debate and the recommendation by the neurosurgeon, we decided last week to schedule an appointment with a GI to discuss Cole's situation. Amazingly, given I was wiling to go to ANY office, we were able to get an appointment with Dr. Louis-Jacques Monday, August 10th.  Ironically enough, he was the same doctor Cole saw at INOVA Fairfax in 2011 when he was admitted for not breathing.

We had a good appointment in the Shady Grove office which was about an hour from Baltimore.  He was very thoughtful and worked very well with Cole.  We discussed the situation and he said it's "plausible" that the constipation could cause back pressure on the shunt that would cause headaches and vomiting, but he didn't seem convinced.  He did agree, however, that we need to solve the constipation problem.  After the exam he said we definitely need to be more aggressive since the schedule we've been following hasn't produced the desired effect.  So he put Cole on a very aggressive two day cleanse.  Cole is taking 7 caps of Mirilax dissolved in 32oz of Gatorade that he needs to drink in 4oz doses every 30 minutes (needs to be finished in 5 min) until all 8 doses are taken.  I decided to setup an incentive program with a count down so he could see progress.  I also decided to use small Dixie cups and very large straws (shake straws) to help it go down quicker and see the progress and how far away the end goal still is.  We were VERY excited to find a Target in Canton (about 10 min from the hospital) where we could find almost everything we needed.  A quick trip to CVS and we were able to find the XLax chocolate squares that will be added on Day 2 (and will double as an "incentive" and on Day 3.

Cole is doing a great job - the first incentive was a banana and he was SO excited when he finished the first cup.  Needless to say the excitement vanished quickly and by step 5 he decided he didn't want Heatwave (the end goal) anymore.  We powered through and were able to get all the Gatorade/Mirilax into him.  We are now on Day 2 and it's going well but he's feeling very bloated so it has been much  harder since he knows what to expect and would rather not drink than get new toys.

The next step is to hope the cleanse works, then do a repeat x-ray to verify the cleanse was able to get everything out.  If so, we have a regimented Mirilax schedule to carry out moving forward.  If not, we'll discuss next steps when we go back on September 2nd.  Just praying this works and there aren't bigger issues causing the constipation.  Also hoping this solves the head aches, lethargy and vomiting.  It would be nice to cross a few things off my stress list!

Kennedy Krieger ~ Week 3, Neurosurgery Follow-Up and a new specialist on Team Bischoff, a GI

We made it through week three!  Reagan is counting down the days and so am I.  Here's our update from this week.

Monday, August 3rd
After our 2 hour drive to Baltimore and dropping Reagan off at therapy, we drove over to Cole's therapy building and decided to walk to the Medical Records office in the basement of the hospital.  I've left messages and still haven't gotten a call back but I know they can't ignore me if I'm standing at their desk!  After roaming through the old psych ward (cool building!) and finding out that the records department
doesn't include imaging results we made it to another hospital basement and requested a CD with all the MRI/X-Ray data from last week.  During our journey through the dungeons Cole said, "Mom, it's ok, there's no reason to be scared down here right?"  So funny...

Cole had therapy Monday and I was able to sit in his session.  We talked a lot about activities we need to work on at home and how to best develop an environment that is conducive to him learning.  It was a little overwhelming to hear all the considerations that we haven't made before, but I'm trying to take them one at a time and determine how we can accommodate them.  I will participate in the next two sessions as well.

Reagan had a productive day that started with crossing off more days on the calendar that marks the end of her cast time.  They also made water beads and sand art.  The OT wrote her name in glue then she sprinkled sand over the glue and then used an eye dropper to color it.  Given we were all tired from our early morning, we decided to have an easy night at the hotel Monday night to get ready for our week.

Tuesday, August 4th
I didn't get very much of an update on what Reagan did Tuesday, but she did leave very tired and brought home her sun catcher.  This was something she made by placing beads in a flower shape and then they heated it up to melt the plastic.  She was smiling when she arrived and smiling when she left so I am assuming it was a good day.

After picking Reagan up we surprised the kids with a trip on the Urban Pirates cruise at Fells Point.  I've been wanting to take them on a cruise like this at Georgetown for a while now but never had the time.  I didn't have very many expectations and we were definitely not prepared with pirate clothing, but that didn't matter.  Everyone who boarded was given pirate clothes to borrow while on board the vessel.  Although it was 91 degrees and both kids started out a little tired, it was an absolutely fantastic experience.  The crew of pirates were funny and engaging.  They were great working with the kids and everyone had a blast.  They danced, did limbo, did a conga line and shot water canons at a pirate who stole the booty out of our treasure chest.  The pirates acted out a feud and told a story about this angry pirate who stole the treasure and the kids listened so attentively.  They've been talking about Mad Dog all week.

After the pirate cruise we decided to find somewhere to eat in walking distance.  Fells Point is a very nice area with many old buildings that provide a very quaint atmosphere.  There were a lot of people sitting outside at tables, drinking wine and enjoying dinner.  We decided to eat at Riptide by the Sea.  Although Reagan was too tired to make it through dinner, it was good to get out of the heat and have something to eat before heading back to the hotel for bed.  It was an early night for the kids trying to get them some additional rest.  Reagan was super difficult to get up this morning and I"m hoping tomorrow will be easier!

Wednesday, August 5th
Therapy Wednesday was at the pool again.  We decided to do a test run with the shuttle since I would be working on Thursday.  Overall it was a smooth process, although they are unwilling to wait while we walk Reagan inside so we have to take the shuttle an hour earlier, wait an hour and then pick up the next shuttle back to the hotel.  Overall it works well and given it's complimentary, it's a nice alternative to using a cab or Uber.  Given Cole was complaining of head aches Monday, Tuesday and again Wednesday we decided to have a low key day and spend the afternoon at the hotel pool.  Although VERY cold, it's nice having it onsite.

Thursday, August 6th
Thursday was a work day for me.  I am working on a project for the Defense Information System Agency training on a new project management software.  Megan took the shuttle and dropped Reagan off at therapy.  Her therapy Thursday included a field trip to the grocery store and Michael's to choose materials for a project for next week.  It's always amazing to me how you can make anything therapy.  They had a lot of fun pushing carts and carrying the bags.

After work I picked Reagan up from therapy, dropped her and Megan off at the hotel and headed back to Sterling with Cole. Unfortunately the only neurosurgery appointment we could get was at 8:45am in Fairfax on Friday.  Worried about traffic, I decided it would be easier to get there from home than from Baltimore.

Friday, August 7th
Friday Megan took Reagan to therapy so Johnny and I could go to Cole's neurosurgery appointment.  Reagan had a very busy day!  She rode bikes, did Yoga, made a clay pot with a pottery wheel and did more art projects.  She left therapy extremely tired today.  We've had two really good weeks and she has had such an amazing attitude.  I firmly believe having Jaryn to commiserate with her has really helped.  Unfortunately, she told me today she didn't want her left arm anymore.  I let her vent, I told her it's ok to be frustrated, I told her I was proud of her, and gave her some time to be angry.  Once she had time to settle down we had a long conversation about how far she's come and how proud of her we are.

The appointment with the neurosurgeon was just as expected.  Dr. Myseros confirmed that the shunt hardware is fully functional and looks good. The good news is that we were going to have to do a scan next year and now we won't need to.  He said it's plausible that the constipation could cause back pressure on the shunt that could cause head aches and vomiting. Given the shunt is operational he said we need to consult other specialists to resolve the issues with the head aches if they continue.  Unfortunately Cole continued to have head aches this week on Monday, Tuesday and Wednesday.  They weren't horrible, but still enough to concern me.  We've been very aggressive with the Mirilax, but haven't been as productive as I would hope.  After discussing our concerns with Dr. Myseros he recommended we consider seeing a GI.  So I called and was able to make an appointment for MONDAY.  I was floored - that never happens!  We will meet with Dr. Louis-Jacques in Shady Grove with Pediatric Specialists of Virginia.  The funny part is that we saw this doctor back in 2011 when Cole was in the PICU because he wasn't breathing.  I'm sure he won't remember us, and apparently they have a new computer system so there is no history of that treatment.

Next week will be a busy week with one GI appointment, one appointment with a neuro opthalmologist at the Wilmer Eye Institute and I will be working three days next week on top of 6 therapy appointments.  And most importantly, Reagan's cast comes off on Wednesday and she is over the moon about it!