From the Minds of Children….

I can't believe it's almost Thanksgiving!  Where does time go?!  We recently took Cole's 4 year and family pictures.  It has taken until just recently to have two children who cooperate for pictures and I can't tell you how exciting that is!  It makes pictures must more fun and a LOT less stressful.  Unfortunately I can't share ALL my favorite pictures yet because I don't want to spoil our Christmas card but here are a few!

I have two quick updates on doctors' appointments.  Reagan and I went back to see Shawn at Nascott Orthotics and Prosthetics and had him modify her brace according the physiatrists orders and physical therapist's suggestions.  The toe plate was cut down and the sides were trimmed down.  Not only does it not hurt to go on anymore, but Reagan can do it by herself!  WIN - WIN !  We definitely see this brace as a stepping stone toward not having a brace, but we are going to remain cautiously optimistic for now.

Cole was also able to FINALLY get in to see a Developmental Pediatrician.  After 4 phone calls and 6 months of waiting someone finally called back and offered an appointment two days later!  We saw Dr. Calbert from Children's National Medical Center and I really liked her approach.  She asked a LOT of questions and completed a few evaluations with Cole.  I think my favorite was when she asked what the picture of a lower case t was and he said, "That's a cross, it's where Jesus hangs."

Unfortunately after 2 weeks of constipation and Mirilax every other day for 10 days the medicine started working during the appointment and he was very uncomfortable and crying most for most of it.  Can't blame the poor kid!  We talked for a long time and I provided a family history.  Unfortunately she said he shows all the classic signs of ADHD.  She provided some recommendations for how to work with him and asked that we come back in 4-6 months.   Dr. Calbert's office books out 6 months and unfortunately there were no available appointments.  I was told they are working to clear her schedule since they hired a new doctor and recommended I call back next week.  Let's hope we can get back in to see her!

I find my feelings about this diagnosis very interesting….so much like my response to seizures before I had a child with them.  I would think, "they don't hurt you so what's the big deal?" Or glasses, "everyone has glasses, so what?"  But until you face the reality of how it changes your life you don't really look past the surface. So many kids are diagnosed with ADHD that it feels somewhat "normal," but as a mom, I realize this means he will face more struggles in learning than most kids…on top of the other challenges that he is already facing.  And although we will take this head on like everything else, it does kinda make me say, "Seriously? More? Enough is enough." So I will be doing some research and talking to people who know people and get as many recommendations as we can.  Luckily these waters have been charted by many before us so there will be guidance and understanding that we don't necessarily have with some of the other challenges.

Luckily we don't have another scheduled doctor's appointment until February!  Wow, it feels like a vacation!  So given I don't have THAT to write about, and given the kids have been cracking me up lately with their wit, I decided to start sharing some of the witty comments.  Here are a few to catch us up….

Cole recently asked if I would play "the me song".  I was slightly confused and he pointed to his penguin from Build-A-Bear that we got last Christmas that plays Frosty the Snowman.  He proceeded to sing, "Frosty the Snowman was a jolly happy soul.  With a corn cob pipe and a button nose and two eyes made out of ME!"

Cole was recently invited to a birthday party for a classmate.  A pregnant mom looked at him and said, "Well you are sure a big boy."  And Cole responded, "Not as big as you!"  Luckily he gave her a big smile of approval and she wasn't offended.

Cole and Reagan recently had Crazy Hair Day at school to raise awareness for childhood cancer.  He chose to wear one of Reagan's tutus on his head upside down.  When he got off the bus (4.5 hours later) he was wearing the tutu and I laughed and said, "Are you still wearing that?" To which he responded, "Are you still wearing THAT?"

Reagan begged to have an allowance and we told her she needed to earn money just like mommy and daddy have to do so now she has chores that she is expected to do at home. So we talked about options and she is required to make her bed, clean her room and clean the leaves that have dropped from the tree in the family room (starting light).  Last Friday she asked for her allowance and I told her she needed to clean up the leaves before I would give her the allowance.  She told me she didn't feel like it so I told her she wouldn't be getting her allowance.  The next day as we got ready to go to the store she asked for her allowance so she could buy something. I reminded her that she wouldn't be getting it since she didn't do all her chores.  When she said she would do it now I told her I had already cleaned up the leaves so it was too late.  She looked at me rather annoyed, went to get the broom and dust pan, walked over to the tree, shook it and proceeded to clean up the new leaves that fell.  After dumping the leaves in the trash and hanging up the broom she asked if she could have her allowance.  After feeling rather conflicted as to whether I should encourage this procrastination I decided her creativity in creating work and therefore creating money was rather ingenious and I gave it to her.  However, I think this will probably only work once :-)

More to come I'm sure!

Cole Turns Four and Reagan Rides in Show #2!

Wow, it has been a busy month.  Our little Ironman turned four on October 6th and we celebrated with his friends and cousins at the Dulles Sportsplex with a soccer party.  He had a great time with Coach Marie learning new soccer moves and playing on the moon bounce.  Cole's favorite toys this year were Optimus Prime (Transformers) and his new planet book from Grandma.  After just a week he has memorized all the planets in order from the sun!

We also went to my parent's to light a lantern for Kendall.  Each year the kids ask more questions about it.  And although they have a lot of fun lighting the lantern and watching it rise to our angel in Heaven, it's always hard to explain the raw emotions that we still feel in our hearts.  For the kids, it's a fun activity because they don't feel the pain and loss that we feel.  So for now we give them lots of hugs and thank God that they are both part of our lives here on Earth.

October was also filled with trips to Great Country Farms with Emma and Luke, Pumpkinville with Reagan's friend Carter and his brother Derek and Cox Farms for Johnny's work picnic.  The kids had a lot of fun on the slides, tractor rides and Reagan especially liked swinging from the rope swing!

Reagan also had her second horse show!  She rode in three classes: walk/halt, walk/trot, and an obstacle course.  She placed 4th, 3rd and 1st!  She was very excited and had a lot of fun especially since she rode in the same classes as her friend Sydney.  We were glad her pony Cupcake was a good boy!  We are convinced we sweetened the deal with the apples we brought him.

September - Neurology, Physiatry, Neuro Psychology

It has been a busy month!  In addition to starting school and getting a new brace it was time to go back to the neurologist, back to the physiatrist and back to the neuro psychologist.

Dr. Lavenstein was happy to see how well Reagan was doing.  He said her medication level is


sufficient for now and we should keep doing what we're doing.  We don't need to go back until March!

We also visited Dr. Morozova, Reagan's physiatrist.  Our big question was about the new SMO.  She agreed that the toe plate was too long so she asked that we go back to Nascott (the orthotist in DC) to have it trimmed back.  She also said we could have the sides shortened since Reagan doesn't really need the ankle support.  Although this is all great news…that means the new shoes we bought will now be too big.  It also means another visit to DC which is tough since Shawn is only there on Wednesdays and it is IMPOSSIBLE to get an appointment on his schedule.  Needless to say, she said she's not ready to eliminate the brace, but with how she looks now we may consider that when we come back to see her in February.  We also talked about constraint therapy.  She said research indicates this methodology is best for children who need to get their brain to realize they have an affected side.  Given Reagan is so high functioning now she thinks we really do need to consider a bi-manual program instead (intense therapy with two hands).  So off we go doing some research…

Reagan's private OT mentioned last week she feels Reagan has increased tone (tightness) in her left hand. So I also asked Dr. Morozova whether she thinks we should consider Botox again.  Although I am not a big fan of Botox (and having to put Reagan under anesthesia) we saw such amazing improvement in her supination that I wanted to see what her opinion is.  I was very happy to hear she doesn't think we should consider it for Reagan at this time.  It isn't uncommon to see increased tone during periods of growth spurts but the goal is to stretch regularly to try to counteract the effects.

Lastly, Cole had his 4 year neuro psych evaluation with Fairfax Neonatal Associates.  Although we had a private evaluation last year, this data is used for longitudinal studies that they do about premature babies born in the NICU. Overall the evaluation went well - it is about 4 hours so he is rather tired by the end.  But we look forward to comparing the results to the evaluation we did last year and seeing the areas where he's making progress.

In addition to keeping up with weekly OT, biweekly PT (for Reagan), doctor appointments and school we have gotten out to play a little.  We've been ATV/dirt biking a few times.  Reagan still loves her bike and riding the ATV with Dad.  The big breakthrough is that Cole is now riding the dirt bike and squealing WHOOO HOOO.  He doesn't have the strength to keep the throttle activated, but he's going slow enough that Dad can walk next to him and hold it.  And of course there's always the obligatory trip on the tractor to get a big smile.

Reagan's big move from an AFO to SMO

We wrapped up UVA with an assessment last Friday and Reagan did a great job.  Cole also had therapy with Alan Friday.  He worked more with the scissors and "made a mess" cutting paper.  We were lucky enough to be able to take the scissors home and I'm looking forward to trying some of these activities with him.  Cole had a lot of fun playing games and then we hit the road.  We were all very excited to be home for the weekend without thinking about getting laundry done in time to repack and leave again the following week.

We had a great weekend and fun last week of summer.  Reagan had several play dates and we spent a lot of quality time together.  The week was also busy with Back to School Night and Open House for school.  Reagan will be in Mrs. May's Kindergarten class with Mrs. Carr and Cole will be in Ms. Carolann's class with Ms. China.  Although both kids are excited, I'm sure the transition next week will take some adjustment.  Luckily I have worked it out for Reagan to take the bus with Cole to school.  If you remember, he still had a little trouble getting on the bus in the morning. They are now fighting over whether or not they will sit together.  We'll see who wins that one!

We were back to therapy this week at Children's Therapy Center.  It will be good to get back in the regular routine.  We also had an appointment to FINALLY pick up Reagan's new brace at Nascott Orthotics and Prosthetics at National Rehabilitation Hospital (NRH).  There was a discussion about what brace to get next and the Physiatrist ordered a Supra-Malleolar Orthosis (SMO) instead of the Cascades 3.5 AFO we had last time.  The advantage is that she will have more range of motion allowing her to increase her muscle strength and possibly build up her calf muscle (so they are equal on both legs).  The disadvantage is that the brace does not prevent the toe drop.  I am hopeful that the brace will still provide the stability she needs but give a little more flexibility.  

I will say, even after 5 years and 6 braces it's still a fight to get her to want to wear it.  We were on our way home from the hospital today and Reagan had taken her shoes off in the car and had the brace in her hand.  She said, "hey mom, it's like I have my very own glass slipper just like Cinderella. I wish I had one for my right foot too."  I could have cried.  I was so excited to think that she is hopefully going to wear this one without a fight.  Not to mention I love the butterflies. 

Of course new brace means new shoes for Reagan…   which is worse for me than jean shopping and bathing suit shopping COMBINED.  We stopped at the Tyson's Nordstrom on the way home thinking they would have a larger selection.  The bad news is that we bought the only pair that fit the brace so once again she didn't get to "pick" what shoes she wanted to buy.  The other bad news is that they no longer carry the Tsukioshi brand that have worked so well in the past.  The good news is that she liked the one pair they had (in both sizes since she needs a bigger size on the left to accommodate the brace) and she is convinced these new running shoes make her run faster….which they probably do!  Win - win in my book!

UVA Graduation AND a big anniversary for Reagan!

WAHOO! And just like that we're done and Reagan has graduated from UVA constraint therapy for the third time! Ok, who am I kidding….I feel like we've been here forever and we are all exhausted.  We started with a quick trip to the Bounce-n-Play to run around before heading to the hospital at 1pm.  Emily took Cole to the Downtown Mall to visit the outdoor carousel while I sat and waited for Reagan.

Reagan played several games today to include one where she had to practice making a fist and playing Eeny, Meeny, Miny, Mo with the cards on the table.  Although making a fist isn't difficult, she had to supinate her wrist to hit the table with her fist as you can see Ms. Sue doing.  With the same game (Funny faces) she had to pick the cards up and stack them.  Also a very tough task that requires supination and wrist extension.

Since today was her last day the focus was on explaining the skills she should be taking home and practicing.  A big focus was on "floating lefty" and the fact that lefty needs to help and not just "sit around on vacation".  I know it sounds harsh, but lefty often gets forgotten for tasks that don't necessarily NEED two hands but that could be a lot EASIER if two hands were used.

There are four areas of strengthening that we have as homework from this program.  I have a two page program to follow at home, but here are the highlights:

• Wrist Extension: Place forearm on table so hand hangs off the table, palm down.  We have Reagan lift a 1 pound weight up as far as she can.  Let it drop as far as she can between lifts.  We are supposed to do 5 sets of 20 every other day.  Our focus should be to encourage her to lift her hand/wrist higher as she gets stronger.
• Finger Strength: With wrist extended to at least neutral, squeeze a squishy ball or play doh or hold onto a top or toy against some resistance.  Try to complete 5 sets of 20 every other day.
• Shoulder flexion: Raise arm fully above head to reach for objects.  Aim for 5 sets of 20 every other day.
• Weight bearing: Yoga continues to be a great way to do weight bearing through her arm with an extended wrist and elbow. It's also an excellent overall strengthening activity.

As far as future sessions here at UVA Children's Hospital, we will come back in 6 months and again in a year for another assessment to meet the requirements of the study.  Unfortunately…which I didn't realize…we can't do ANY constraint therapy for a year from the day we finish this session (today).  That means she won't be able to do CIT next summer unless she misses school..which I am not willing to do.  I spoke with Sue and she would really like to see Reagan participate in electrical stimulation for her hand.  We've considered this for her leg, but haven't discussed it for her hand.  Unfortunately, we need an "intensive" program (multiple hours for multiple days) in order to justify the drive to Charlottesville.  Needless to say we will be investigating our options for next summer and I'm sure there will be more to come about that!

And although therapy is done, Reagan is scheduled for a four hour assessment tomorrow similar to the one she had on our first day.  We are hoping it will be just as short as the first one too!  Luckily I was able to schedule Cole for therapy tomorrow during Reagan's assessment so we'll get everything done in the morning and head home.  He has been very receptive to the therapists here so I'm excited he has been able to "play" too.  Every day when Reagan goes to therapy he says, "do I get to go too?"  Glad he likes it more than Reagan did at his age!

As I think about the last month and how much progress we've made it seems fitting that today is the 5 year anniversary of Reagan's brain surgery.
I remember this day like it was yesterday.  I was scared to death watching my 2 month old get wheeled away.  I had no idea how hard it would be to see her intubated (tube down her throat) and lying on a hospital bed and not be able to pick her up and tell her it was all going to be ok….because we had no idea if it was going to be ok.  And I had no idea when the surgeon said "she may be a little weaker on her left side" that she meant Reagan would have Cerebral Palsy and would face years of grueling therapy.  I think about the fact that Reagan has been going to weekly and eventually twice weekly therapy sessions since she was 3 months old.  I think about how she used to fight the therapist.  She would cry.  I would cry.  And I would doubt…I would doubt whether all this time and emotional pain was going to help her or ever make a difference.

But shortly after our first constraint program in March 2013 I have not doubted for ONE DAY that the time, the tears, and the fights that we have endured together are worth EVERYTHING for the amazing progress that we have seen.  I went from thinking a weak left hand meant it would not be as strong….to realizing it meant that it may never work.  But when I look at where she was 5 years ago today to where she is now, I am literally blown away at the miracle of the human brain and the power of persistence. I feel so blessed to be her mom….

UVA Constraint Therapy ~ Day 11

We had a relaxing morning since Cole started therapy at 11am.  Cole spent more time cutting and playing games.  Unfortunately Mr. Alan said he was much more distractible today, but they had a good session regardless.  After his therapy he and I came back to the hotel room and had a quick lunch with Reagan and Emily before heading back to the hospital at 1pm for Reagan's therapy.  It was SO nice having Emily here again this week so I was able to take just one at a time to their appointments.  Reagan spent more time building forts and making a "cranky."  She started the construction yesterday by painting the box, sprinkling Pixie dust, cutting the story paper and drawing the story of Tinkerbell's Adventure.

Well it was bound to happen eventually.  She had a tough day at therapy.  Unfortunately she struggled a little more and left extremely cranky….no pun intended.  You would think being without the splint would make this week EASIER, but Ms. Sue said she was really pushing Reagan today.  For example, if she picked anything up without the wrist extension she would make her put it down and try again.

Today she rolled the story paper onto sticks and inserted them into the box to CRANK the story.  What a cute idea!  Reagan even made a little handle on the left side to hold with her left hand!  She's very proud of her "cranky" and can't WAIT to read the story to her grand parents and show them how the story unravels as you crank the sticks.


After therapy today we decided to take a trip to get Kohr's Bros Frozen Custard.  It was amazing!  Unfortunately Cole slept through the entire visit including the ice cream AND the carousel!  But he was super cranky too so he needed the rest.  After ice cream we took the kids to the Fashion Square Mall to play at the indoor playground.  They played, met a bunch of new friends, we had dinner, and headed back to the hotel in a pouring down rain storm to get to bed and do it all again tomorrow! As hard as this day was, I was the lucky mom who got to put two kids to bed who were all smiles after bath time.  And those smiles are what make everything all better….

UVA Constraint Therapy ~ Day 10

Well we have kicked off the last week of constraint therapy…although given the conditions on the research study Reagan will be doing all bi-manual tasks this week and will not wear the splint at all.  Although I am extremely disappointed that I feel like we're "losing" an entire week, I am a psychologist at heart who knows the value of research and I understand the process.  No matter how you look at it, however, she's is getting almost 9 hours of therapy this week and that's 8 hours more than she would get if we were at home.  So it's still a win in my book!

She had a fun session today doing more work with the marbles and tube and building a "cranky" box.  Given it's still drying, I will wait to post pictures until tomorrow and keep that project a surprise.  To give you a hint it involves a Tinkerbell Adventure, a green cardboard box and a crank.

Cole had a lot of fun playing with the new train set that was delivered to the waiting room.  He was enamored with it!  And lucky for us he was well entertained since our hotel room wasn't ready until after 3pm.  I was only able to get him on the therapy schedule on Wednesday and Friday so today was all play time for Cole!

After therapy we were able to finally check into our room and then did a little shopping.  First we went to Birds Unlimited and unfortunately there were no birds or bird food…bizarre as that sounds.  And apparently our "touchy fingers" apparently did not make us ideal shoppers so we quickly exited the store before I said something rude and the police had to be called.  Then we found a music store nearby that was a little more "forgiving" but it was still a LOT of temptation to play all those beautiful…and expensive…instruments and after purchasing a triangle and a rubbing stick we exited quickly to find dinner.  Unfortunately I don't have any pictures of the new musical instruments for our stage in the basement at home, but I will try to post some tomorrow.

UVA Constraint Therapy ~ Day 9

Another great day ends week three and we're 75% done.  We started our day with a trip to Great Harvest Bread Company to get a little treat as a thank you to Ms. Ruth.  This was her last week with us since she will be on vacation next week.  Then we took a trip to a new playground that we found about two miles from our hotel.  We had a great time there and were able to work on several strengthening activities.

It is very difficult for Reagan to hold onto something with her left hand and lean out with her right.  Although she has gotten much better at holding on, it is very difficult if her weight is on it.  As you can see in this picture, this playground had little platforms and you had to jump from one to the next and hold onto the vertical poles.  Reagan had to really stretch to reach from one to the next.  Her default position is to keep her left elbow bent.  It took several times across the lily pads to get a good stretch in her left arm and allow it to extend, but she did it!  We are definitely going back there next week!


Reagan and I left the park to go to therapy at 1pm and Emily stayed with Cole so he could play in the splash pad in his bathing suit.  I was VERY impressed that Reagan left willingly.  She knew she was going to therapy and he was staying for the water park.  This really speaks volumes if you ask me.  It shows that either she is enjoying therapy this time around, or perhaps she is recognizing how much progress she is making while she is there.  Either way, we are seeing progress.  You can see her pushing the phone button here - not something she could do last week.  She still can't keep her finger straight and it still collapses, but she is able to get it working!!  She also built that Wild West covered wagon one piece at a time.  Each styrofoam pipe, every magnetic ball connector and every clip for the fabric.  And not only put it together, but put it all away one by one!

Ruth was also very exited to show me a new trick Reagan learned today.  She had to use a card board tube to pick up a marble buried in rice with her left hand.  The trick is that she has to rotate her wrist one way to pick up the marble and rotate her wrist the other direction to allow the marble to slide into the jar of marbles.  Although very challenging, she worked very hard and we are looking forward to more new challenges next week!

UVA Constraint Therapy ~ Day 8

Low key is becoming our new mantra!  Not necessarily intentional, but our schedule just doesn't allow much else to fit in these days.  Our day started with therapy at 11am for Cole followed by therapy at 12:30pm for Reagan.  They both had a lot of fun today.  Cole worked on using scissors to cut straws.  I never would have thought to try that, but they are easier to cut than paper since they aren't flimsy and he doesn't have to manipulate them - just hold them to cut.  His therapist, Alan, fabricated a special modification that made the finger holes smaller so it was easier for him to use.  And lucky for us…we get to take them home next week!  Cutting is definitely extremely difficult for Cole still so I'm excited to see how they work.

Reagan had another fun day with Ruth working on weight bearing through Yoga, playing with rice and other games and doing swing activities.  She has mastered the "candle" move and especially loves the table and downward dog.  Ruth said she has asked Reagan to touch her phone button on occasion over the last three weeks to check the time (they study has very strict protocols on how long certain activities last).  Today was the first day Reagan's left hand pointer finger was strong enough to push the button and light up the phone.  What a great sign of building strength!  Pretty exciting news.  This is the first step in being able to do things like button a shirt or her pants.

I was able to get several hours of work done while the kids were at therapy, but I wasn't able to finish one of my client deliverables.  So we went back to the hotel after therapy and I worked for a couple hours while the kids played and Emily watched them.  Then Emily was nice enough to give Mommy a night out with another mom who is here, Deena, whose son Tyler is also in the program.  We also spent our first UVA Constraint Therapy program together during the big snow storm of March 2013.  It was great to get out and talk about the program and about nothing.  It means so much to have someone who can empathize with what it is like to face the daily challenges that we face.  Before having children, losing a child, and going through brain surgery with each, I never would have guessed all the amazing people I would meet.  The people who would give me strength.  The people who would give me hope.  And mostly, the people who would let me cry and remind me to get back up…that it will be ok.  And although I would trade the journey without question, I am blessed for the paths I have crossed and the lessons I have learned along the way.  One more day and we're headed home….

UVA Constraint Therapy ~ Day 7

We had a low key day today.  We drove down and stopped at Panera for lunch since our hotel room wasn't ready for check-in yet.  Then we were off to the hospital by 1pm. Reagan has another fun day playing with Ms. Ruth.  They played games, did Yoga and built a fort…one of Reagan's absolute favorite activities.  As with everything, it's all about the process of getting everything out, getting it setup, playing with it and then breaking everything down to put it away.  Today was no different!  Ruth said she definitely is seeing increased strength in Reagan's left hand which is great news!  You can also see "big fingers" (aka placing all fingers straight out) is becoming much more common without prompting.

After therapy I got suckered into ANOTHER trip to Build A Bear for Summer, Princess Aurora's kitty cat and then treated everyone to a new adventure.  FONDUE!  We went to the Melting Pot and had a lot of fun trying new things.  And although we were all tired, it was a good time and it always ends well when they bring out the chocolate.  Although the bribe was that all dipping would be done with lefty, I quickly realized that was WAY too complicated so we compromised by having "weight bearing" on lefty on the table as she reached into the pot with her skewer. The smile says it all - strawberries and chocolate were Reagan's favorite!  And although Cole was entertained by the sharp sticks and banging them, he didn't really take to fondue like I had hoped.  But hey, it's all about adventures right?!

UVA Constraint Therapy ~ Day 6, horse back riding and band camp!

Fifty percent done!  Overall we had a good week in Charlottesville.  Our Day 6 started out smoothly with a very low key morning.  It gave all of us some much needed down time before therapy at 1pm.  After the meltdown on Tuesday we decided it will probably be best if I only join the therapy sessions toward the end.  Unfortunately that means I don't get as many pictures.  But on the same token I want what's best for Reagan.

I've been thinking a lot about this round at UVA versus the last one.  I have definitely noticed a big difference with transference.  When Reagan had the cast all day every day for 30 days in March and August of 2013 I really felt we worked very hard for a full month.  It was painful.  It was grueling.  But it was productive and we saw amazing results.  This round I feel like we work really hard three days every week.  But when we come home, although she uses her left hand, it just isn't as intense.  With that said, I am impressed with how much Reagan uses her left hand.  At her riding lesson today she was telling everyone all about Charlottesville and how she goes there to work on "making lefty stronger".  I am so happy to see her so proud of her accomplishments but would love to know how different things would be if we were placed in the 5 days of therapy with a cast for 30 days.  Call me an over achiever, but I love seeing the smile on that face!  I look forward to one day reading the research findings.  And you can see in all these pictures that she is working hard on using it and the smiles show that she is excited about how much her hard work is paying off.

It was a big day for Reagan at riding.  She played a game where she had to touch the dressage letters posted on the rails and it was all with lefty!  And then she not only cantered for the first time but also started jumping!  Her giggle said it all!  I'm so proud of her!

Today the kids spent the morning with their cousins at the Loudoun Valley High School band camp.  It's great for them to spend time with their cousins and see music in action. Cole has shown such an interest in music that we started him in a music class at Bach 2 Rock.  Today was his third lesson and he is having so much fun.  Each week he is introduced to a new instrument.  And today he also learned about the staff, clefs, and drew notes on the whiteboard.

UVA Constraint Therapy ~ Day 5

Wow - what a difference a day can make!  We decided after such a rough day yesterday that we would take it easy today.  We took the kids to the Bounce-n-Play in the morning which gave me some time to work while Emily watched the kids. They had fun playing and were able to ride the small train outside in the parking lot. Reagan even had a snack and ate the popcorn with her left hand!  As you can see in the picture she still has to shift her posture since she can't rotate her wrist but look at that pincher grasp!  Also, you will notice she is keeping her elbow against her body.  It's much easier to get that popcorn to the mouth when the elbow is against the body and that's something she is reminded about constantly and is obviously practicing!  AMAZING!  Definitely not something she could do so easily last year at this time.  After a couple hours at the bounce house we left and took our packed lunches to the hospital to make sure we beat the traffic.


Given I had several back to back conference calls for work today I wasn't able to join the therapy sessions for very long.  Cole apparently did very well with Kate and played a few games, played with play doh and rode a plasma scooter.

Reagan had a much better day today and worked hard playing games and doing activities.  She was very excited about her zebra-leopard mix.  When I joined her session toward the end she was doing a science experiment with sand, baking soda, Kool-Aid and water.  Again, it's all about the process.  The pouring movement of the measuring cup is very difficult because it requires rotating her wrist.  Our hope is that through intensive therapy time like this she will increase her range of motion and build up the muscle so that she will be able to slowly gain more movement and stronger movement.  You can also see that stirring is difficult because she has trouble rotating her wrist to grab the spoon and therefore grabs it from the top.  If you follow our journey here you probably remember seeing that similar tendency with the golf club when we were in Williamsburg.

After adding and mixing all the ingredients she was able to sink her hand into the mixture and feel the bubbly sensation and squeeze the oozing sand at the bottom of the bowl.  As you can see in the last picture, we are also working on getting her fingers to extend fully. Currently she is unable to individually manipulate any of her fingers or straighten them.  You can also see that she shifts her body slightly in order to lift her arm and show you her palm.  But you can tell from that smile that she had a lot of fun with this experiment!

Although these improvements may seem subtle, they are very significant milestones and her progress is amazing.  In the last year she has moved from having what many call a "helper hand" to having a very functional left hand.  There are many kids who develop significant medical complications over time due to the way they "accommodate" their movements due to the spasticity of the muscles.  Kids with a gate shift, for example, often need hip replacements because the shift in posture wears down the hip bone. These types of body posturing are movements are a focus during our time here in Charlottesville.

I feel so blessed to be able to dedicate this time to her progress and see the results.  It's exciting to see her working so hard and getting to an age that she sees that progress and recognizes how much easier the tasks are when she modifies her movements slightly.  We have a long way to go before she will be able to pull up jeans and button/zip them.  But as we always say, that is why we work hard.  Every day we are one day closer and a little stronger.

UVA Constraint Therapy ~ Day 4, Can I have a Mulligan?

As with golf, I think people should get a mulligan when they have a bad day so they can have a do-over.  Week two is well under way and starting out horribly.  We actually got to Charlottesville earlier than expected so our room wasn't ready.  We made the most of it and sat in the car until it was time for therapy.  Both Cole and Reagan had therapy today at 11:30am although Cole only had an hour and Reagan had 2.5 hours.

Cole skipped away happily to therapy and Reagan started out really well.  She started with yoga and had a lot of fun guessing the pose from the riddle on the cards.  She does yoga at therapy at home too so they were very familiar to her.  The focus is to get her to keep her heels on the ground (stretch her tight gastroc muscle) and to get all her fingers extended flat.  After yoga she grabbed her lunch box but struggled to be able to hold it because it was too heavy.  Honestly I think she was overly hungry, but a complete meltdown ensued and I had to leave with her in full tears. I should consider it a win that it took until Day 4 to produce tears, but it never gets easier seeing her struggle.  She also worked on opening doors, using the railings, and several other games that they played after I left.

After Cole was done with his session Emily and I had a quick lunch and went to check into the hotel before we needed to be back at the hospital to get Reagan at 2pm. As I took the cart to the car to get our luggage I BARELY tapped the side view mirror of the car next to mine and it snapped off completely.  I felt horrible even though it was probably a 20 year old car and left my number so I could pay for the damages.  After unloading our bags we got to the room and realized Cole pooped all over his stroller on the walk back from lunch and I ended up having to throw away the stroller.

We got back to the hospital in time to get Reagan and hurried to Monticello before it closed.  This was Thomas Jefferson's home and is located about 20 minutes outside of Charlottesville. We had a great time walking around the grounds and did amazingly well given we had two tired kids and only one stroller.  Although very tired, we tried to continue the two handed activities during our tour.  The one shown in the picture was the underground pulley system where the slaves would send wine directly up through the ceiling/floor into the parlor since it was stored underground to keep it cool.  Nice!

After a quick dinner it was time to get back to the hotel, get baths and get to bed.  And as if we needed more drama, Cole then fell off the bed head first.  After a complete meltdown because he hit is head…and a complete meltdown because she felt horrible she accidentally pushed him off the bed…we were able to get everyone settled and slumber took over.

Overall we had a productive day of therapy…but I really appreciate two sleeping children right about now and hope for a full night's rest to get us ready for another day tomorrow!