Friday, July 31, 2015

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.

Wednesday, July 29, 2015

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!

Saturday, July 25, 2015

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.


Thursday, July 23, 2015

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.


Sunday, July 19, 2015

Summer is done and we're headed to Kennedy Krieger!

We've had a great summer!  The week after school ended in June we had a nice slow week with a lot of pool time.  The following week Reagan and Cole went to swim camp together.  Then we took a family vacation to TN followed by another week of swim camp for Cole while Reagan went to a riding camp.

The swim camp the kids went to was at the same school where they've been taking lessons - Tom Dolan School.  They had a great time and will miss going to lessons while we're at Kennedy Krieger.  The kids also had their last day of Tae Kwon Do today until September.  Although we will miss the Masters there, I'm sure the kids will be practicing while we're gone! They just got their new belts and are anxious to keep learning new moves!

Reagan loved riding camp at Red Gate the last two summers so we planned another one this year.  Unlike the last two years, however, she stayed ALL DAY this year!  It was tough for mom to let the cord get quite so long, but Reagan had a blast and didn't look back once.  She rode the same pony she usually rides in lessons named Tuppence.  It's such an amazing group of girls there - both the kids who attend and the CITs.  The Counselors In Training, or CITs, are teenagers who meet certain qualifications to help out with camp.  They make it a lot of fun.  Reagan was lucky enough to have her cousins there too!  Jacqueline and Robert kept an eye on her and it was fun for them to spend the week together.

The camp is broken into two groups - one group rides first while the other works on a craft.  Then they swap.  And each of the two groups is divided in half so the kids in the group have very similar riding ability.  This week they made concrete stepping stones with horse shoes and glittery gems, tie die t-shirts, foam door hangers, and they decorated a picture frame.  After a morning of riding and crafts they break for lunch in the pavilion and time to play on the moon bounce.  Then after lunch they have swim time in the pool at the house.

The last activity for the week is a costume parade where the kids dress up their ponies.  Reagan decided to dress Tuppence up as a fairy with a flower crown full of ribbons, pink and green wings, sparkling pink fabric around her belly, a pink bracelet around her leg and pink bow on her tail.  And she and her partner decided to wear the extra tutu's I had packed in case they wanted to use them for Tuppence. Reagan and her partner had help from their CIT for the week, Hannah and their costume won a first place ribbon for "Most Glittery".  It's fun to see Reagan around such a great group of girls creating such a bond with friends.  And she truly does have a love for horses.


Now the fun is done and it's off to Baltimore for 5 weeks of hard work. That's of course not the way we're talking about it though!  After sensing some anxiety over having the cast on full time, I've repositioned things (at UVA she could take it off to sleep). We are going to "camp" next week in Baltimore. It's all about positioning and expectations right?!

Unfortunately we couldn't get into the Ronald McDonald House so we'll be staying at a hotel (with a hospital rate).  The up side is that we have free breakfast and a pool (albeit very small) and Reagan's cast will be water proof.  The hotel also has a city bus route across from the hotel so we are hoping to not have to pay the expense parking lot fees to go to dinner every night.  Apparently Reagan will have "themes" every week at camp so hopefully it will feel like camp not therapy.  Honestly I'm a little anxious about 6 hours per day and 5 days per week, but we're going to jump in full speed with a positive attitude.  More pictures to come next week!

Friday, July 10, 2015

Summer vacation ~ Gatlinburg, TN

Wow, what a fun time in Gatlinburg!  We hadn't been to Gatlinburg before and weren't sure what to expect, but we had a great time. This was our first vacation where we weren't worried about naps, diapers or strollers! Amazing how much easier it is when the kids are a little older. Below are some highlights from our trip.

Day 1 - Sunday, July 5th
We decided to break up our drive and stop halfway to Gatlinburg Sunday in Salem, Tn.  We got there in time to go to Gander Mountain and did some shopping, had dinner and let the kids play at the pool at a brand new Hampton Inn before going to bed.  Then we were up early and hit the road Monday for the rest of our trip.

Day 2 - Monday, July 6th
We drove the rest of the way to Gatlinburg, Tn on Monday.  We arrived just after lunch after a stop at the Bass Pro Shops. We surprised the kids with a cabin in the mountains in Severveille that had a hot tub and indoor pool.  The kids were absolutely ecstatic and ended up playing in both every day.  They decided when we left they liked this house better than ours and that we should move to TN! The only disadvantage was the HUGE hill we had to drive up to in order to park at the house. After some play time in the pool we decided to head in to Gatlinburg.  We had dinner at a fun restaurant called Tom and Earl's Back Alley Grill.  We then walked around downtown Gatlinburg and took the kids on a ride on the Gatlinburg Trolley.  Cole has a love for anything with wheels, but most specifically, buses and trolleys.  He was absolutely in Heaven.  Reagan also thought it was pretty neat to see Reagan Terrace Mall and Reagan Drive in downtown Gatlinburg.

Day 3 - Tuesday, July 7th
On Tuesday the kids were up by 6:30am asking to get into the pool.  I pushed them off until 7:30am and then gave in.  They had a fun morning playing in the pool and then we headed out to find the Little Pigeon River swimming hole.  It was easy to find and there were a few other people swimming in the river in that area.  It was such a fun learning experience for the kids to figure out what it means when a rock is green…yes, slippery!  They also learned that river water may not taste salty like the ocean, but it was MUCH colder.  They had a lot of fun looking at all the different types of rocks and throwing them in the water watching how they made bigger splashes when the rock was bigger or when the water was deeper.  After swimming for a while we went into Pigeon Forge for lunch at the Little House of Pancakes and then did some shopping for cowboy boots.  You know what they say, when in France…well we're in TN so boot shopping was a must!  After some shopping we went back to the cabin and made dinner and yes, more time in the pool.

Day 4 - Wednesday, July 8th
Wednesday we had reservations for white water rafting with one of the 12 rafting companies in the Smokey Mountains, Rafting In The Smokies.  We had about an hour drive and needed to be there 45 minutes early for check-in. So we packed lunches and left in the morning to head to the launch site.  There was a fun playground there with picnic tables so we sat and ate while we watched other kids doing the zip line.  Although Reagan weighed enough, Cole was not able to do the zip line so we decided to hold off on that.  We loaded up on the boats and were ready to raft!  The kids absolutely loved rafting and both did a pretty good job.  Cole sat in the front and loved pushing his limits by standing up and leaning on the front of the boat squealing with joy at every bump we hit.  Halfway through the trip the kids were also able to get out and swim.  We couldn't
convince Cole to get in, but Reagan jumped in and loved floating down river.  It was tough for Reagan to keep two hands on the paddle, but she worked really hard and did a great job!  Although it was considered a "family float" and therefore not classified rapids, it was still pretty bumpy and exciting for the kids.  After rafting we took a bus back to our car and Cole was SO excited about riding the bus.  Not to mention, he picked up a few new jokes from our rafting guide on the ride back.  Next time you see him you'll have to ask him!  After rafting we headed back to the cabin for showers…and yes, you guessed it…more hot tub time!  Then we headed to Pigeon Forge to meet a coworker from Johnny's AOL days at the Chop House.  Although we got home from dinner pretty late, we kept promising the kids they could get in the hot tub at night to see the stars.  So we let them have some time in the hot tub when we got home.  We had a great conversation about stars and constellations.  Cole loves talking about planets so it was fun for him to see the stars.
Sadly we don't see many stars at our house because of the city lights.

Day 5 - Thursday, July 9th
Thursday started with the pool again since it was our last day.  We headed into Pigeon Forge for breakfast at the Pancake House.
Wow, there were a lot of pancake houses including Reagan's House of Pancakes.  Then we did a little shopping, had lunch in Gatlinbug and then headed to Ripley's Aquarium.  This was by far the best aquarium I've been to.  There were extensive underwater areas that allowed you to view sea life from under the water.  It was amazing how close you could get to the creatures.  There were numerous species of sharks and seeing them up close really helped highlight their differences. We also decided to pay for the special penguin
encounter.  I was glad I called ahead because they only do encounters twice a week and only two times each day. It was intriguing learning about how the penguins are being bred and managed across the country.  I was expecting the penguin to feel rubbery, but he was very soft.  Unfortunately Cocoa wasn't a big fan of children so the handlers had to block his beak when they pet him.  But both kids decided petting Cocoa was the best part of our trip so it was totally worth it!



After the aquarium we headed back to the cabin and changed to get ready for our show time at Dolly Parton's Dixie Stampede.  Never having been, we weren't sure what to expect.  I called ahead, but unfortunately all the shows at 3pm and 6pm were sold out for Wednesday and Thursday.  So we purchased the 8:30pm tickets.  They didn't have special seats for the visually impaired, but we did decide to get front row hoping that would help Cole be able to see better.  The Dixie Stampede is a dinner show that starts with a band playing in the "carriage house."
 There is general seating and the band plays banjo style music while you eat popcorn, drink orange smoothies and get geared up for the main event.  They even played Cole's favorite country song, Wagon Wheel.  It was priceless seeing his face light up when he realized what song they were playing.  After the pre-show, everyone is escorted into the main theatre where there is a large ring in the center. There were 32 horses, stunt riders, bison, doves, pigs and chickens set to a family comedy.  There were elaborate costumes and a lot of laughs throughout.  Reagan's face was priceless when she was served a full chicken on her plate.  Not sure she's ever seen a full rotisserie chicken!  She was enamored throughout and especially loved the horses and beautiful southern bell gowns.  Cole wasn't able to see all of the show, but he loved the music and the riders as they passed in front of us.  As the show kicked off our waitress asked the kids if they could run fast….to which both
resoundingly said YES.  She asked if they wanted to chase chickens and they both agreed.  Toward the end of the show she gave us the cue and we walked down to the ring with two other children.  They had been selected for a contest in the ring!  Unfortunately Reagan got very nervous and didn't want to do it.  Cole had to chase a chicken from one end of the ring to the other.  He had a blast and although he didn't catch the chicken, he got a medal and was SUPER pumped about it.  He also got a book that was signed by Dolly Parton as part of her Imagination Library Project.  Such a fun opportunity!

Day 6 - Friday, July 10th
Friday we woke up and packed up the car.  We decide to give the kids some final time in the hot tub before we left.  Then we hit the road and drove back to good ole Virginia making it back in just under 9 hours with a stop for lunch.  We all decided it was a great family vacation and that we will definitely go back again!

We are gearing up for Reagan's riding camp next week.  This will be her third summer in riding camp but her first year doing the full day camp.  Cole will have another week of swim camp (they were both in swim camp last week).  Then we're off to our adventure in Baltimore!

Two more Majest belt promotions!

The kids keep having fun with Tae Kwon Do!  Reagan and Cole both tested with Master Lee this month.  Given they will be in Baltimore for 5 weeks they will not be able to attend their classes so they tested together on July 2nd.

Reagan has been promoted to a purple belt and Cole was promoted to a Blue-White belt.  The purple belt test was one of the most difficult Reagan has taken with the requirement to memorize18 different forms in her poomse in addition to kicking forms and verbal test questions.  Reagan has wanted to be a purple belt since the first day we walked into the school.  When we were leaving after her test she said, "Mom, I now have everything I have ever wanted in life - a purple belt and a huge trophy with stars."  If only we could all reach our dreams by the age of six!  Needless to say, we are very proud of both kids for continuing to work so hard.