Reagan's Graduation from UVA CIMT, the August Rendition

I feel like just yesterday I was packing for Cole to go to Aunt Chantelle's and for Reagan and I to go to UVA for our first week of the August rendition of Constraint Induced Movement Therapy...and now it's done!  The month went quickly and was exhausting, but it was completely worth it.  Wow.

The week started a little rough on Sunday morning when Reagan tripped on a toy fire truck and ripped the skin off the bottom of her fourth and fifth toes.  Then Monday night she caught Cole's cold with the raspy cough and runny nose.  All week I've been trying to stop her from wiping it with her cast.  Then Tuesday morning her toes started to bleed again.  In the afternoon she was bit by mosquitos three times on her leg, once on her cheek and twice on her shoulder.  They started to itch right away but got worse and very inflamed by Wednesday.  Not pretty when you have no good way to scratch them since your dominant hand is in a cast and your left hand isn't strong enough to scratch.  Then Wednesday she fell off the moon bounce slide and grew a hematoma on her head.  But through it all, she was a trooper and we're so glad we took on this journey once again.

Tuesday started with a consult with Dr. Romnes, Orthopedic Surgeon.  As you may remember, Dr. Evans, Phsyiatrist at CNMC was concerned that Reagan may have a leg length discrepancy that is causing her to trip (as opposed to having a toe drop from a tight gastrocnemious which was previously diagnosed). The good news is that Dr. Romnes did not see any leg length discrepancy.  He did, however, say that it is not uncommon for kids with CP to eventually have one and there is nothing we can do to prevent it.  I really liked his approach and bedside manor with Reagan, but he provided a lot of conflicting information that will cause us to rethink several decisions.  First, he pointed out the difference in muscle development between her left and right side.  I guess I hadn't noticed it before.  It's subtle, but noticeable once pointed out.  Second, he disagreed with the type of brace Dr. Evans recommended and the one she has currently.  The challenge with her current brace is that it holds her at 90 degrees so her toe can't drop but that means she can't jump.  This exacerbates the issue of her underdeveloped calf muscle.  Third, he said serial casting on Reagan's leg probably won't help because she already has range of motion in her ankle (which is what serial casting tries to achieve).  He said we should continue Botox if we felt like it helped, but recommended we wait to try the Bioness/Walk-Aid electrical stimulation until Reagan is a little older (she has to know how/when to turn it off if she sits down at school).  He did say that it would be good to continue the stationary e-stim that we are doing.

We also met with Ms. Ruth for therapy on Tuesday.  We had a great session and were able to play outside for quite a bit of our session.  Reagan spent time pouring sand over her foot (the other one was too bloody to go in the sand) and picking out the pretty rocks with her left hand.  This was a great workout for her hand since the sand was heavy and the rocks were very small.  She also spent time watering plants, also a great activity to carry, hold and pour the water can.  We also reviewed her goals for the month and started to see how she was doing in achieving those goals.

Reagan's goals for this month included:

1. Stacking 3-4 blocks with her left hand
2. Holding a fork and cutting play doh with a knife (bilateral activity)
3. Making a play doh ball (bilateral activity)
4. Throwing a ball at least 3 feet with her left hand
5. Scooping food onto a spoon with her left hand
6. Pointing to objects or pages in a book with her left hand

Check out this picture and count the blocks. Yes, there are NINE!  Yes, I couldn't be more proud of her and clearly Ruth is too!  This skill is very difficult because she has to 1) pinch the object 2) lift it supporting its weight 3) stabilize it on top of another without tipping it over or stacking it crooked 4) release the object - probably the most difficult part of the task for Reagan.

We took it easy after therapy Tuesday and walked around the mall for a while.  I let her play in the mall playground so she could have some down-time and then had dinner at her favorite restaurant, Red Robin.  We then headed back to the hotel. Getting out of the car Reagan got a huge smile on her face and said, "hey mom, do you think Daddy is going to surprise us again?"  So cute to know how much that meant to Reagan last week and how much she loves her Daddy.  I explained that Daddy had to work and she was ok with that, but was very happy when he called to say good-night.

Wednesday we also spent time practicing her goals to see how well she had progressed.  One challenge for Reagan has always been reaching above her head with her left hand.  Historically she has not been able to reach with a straight arm.  Generally the elbow remains bent due to the spasticity of her muscles.  Check out that reach!  She was also able to take her cast off to practice cutting with a knife and fork and using a rolling pin to roll out the play doh after forming it in a ball.  She excelled at both tasks much better than expected. 

I also mentioned last week that Reagan has declared green as her new favorite color.  That continued this week with choosing a new green dress at the mall Tuesday, choosing a green cast on Wednesday, and picking green construction paper over pink for her cutting activity on Thursday.  Perhaps she is actually going to stick with this declaration!

Wednesday after therapy we quickly met with a physical therapist, Patty, to get her perspective on the situation with Reagan's brace.  She reviewed the recommendation from Dr. Romnes and said the brace he is recommending would be a good choice, but will be very difficult to get to fit in any shoes.  Her current brace is a Jumpstart Kangaroo AFO and he is recommending a DAFO, which simply means it is dynamic and therefore has a joint to allow flexion.  Currently she can't point her toe at all when she's wearing the brace.  After a long conversation, we decided to have Reagan's PT measure her current range of motion, try not wearing the brace for two months and then re-measure to see if we see increased tightening of her calf.  She was the FIRST person to explain why kids with CP often get tighter during growth spurts (also something we will need to monitor throughout Reagan's growth).  She said for kids with CP the bones grow at a normal rate, but the muscles grow much slower.  So they are tight until they catch up to the length of the bone.

We had a quick lunch and went to the hotel to take a nap. We then met a little girl and her mom at Bounce and Play that we met the first week at UVA at the museum.  The girls had a great time playing until Reagan got her leg caught on the slide/moon bounce and landed head first on the concrete.  She sat on my lap for quite a while as the hematoma grew on her head.  She played for a little while longer and then we decided to head to dinner and get back to the hotel for an early bed time.  And yes, I was keenly watching for the signs and symptoms of a concussion thanks to my First Responder training!

Thursday morning I'm in the bathroom doing my hair and getting ready for our last day of therapy when I hear Reagan yell, "Mom, come here.  Hurry." I'm thinking...great, she spilled her cereal all over the bed and there's no way we will be on time now.  I poke my head out and she says, "look mom, I'm pointing!" I can't really express how proud I was of her at that moment.  She has never isolated her finger like that before.  Of the six goals outlined above, this was the only one she hadn't successfully mastered.  She was so excited to get to therapy and show Ms. Sue.  She must have asked me 6 times, "hey mom, are you sure we aren't putting the cast on today?"

When we arrived at therapy Reagan quickly tried to show Ms. Sue how she had pointed.  Unfortunately, although she tried very hard, she wasn't able to independently lift her pointer.  We did, however, spend the day working on pointing activities.  It started with a book that had you put your finger in the holes.  Then another book that had you put cheerios on each page.  She also spent time pushing buttons on the computer and practicing with the stylus coloring on the computer.  We also played two GREAT games on the iPad: Ready to Print and Bugs and Buttons.  One was a pinching game that required her to use two hands and the other she had to drag and drop objects with two hands.  Two others that were recommended for us to try were Dexteria Junior, and Toca Boca.   Can't wait to start playing those this week!  We are very hopeful that given she was able to isolate her finger once today that continued practice will help replicate the activity.  In addition to learning to isolate that finger, we are working diligently at trying to then press buttons.  As you can see in the Elmo book, her finger generally collapses when she tries to push with it.  However, we are very hopeful that she will continue to strength the finger the more she is able to use it.

After another great week, we said our good-byes and hit the road not sure when we will return.  We found out Tuesday that although Reagan can participate in the study, she will have to be out of the CIMT program and without Botox for six months before she can begin the study.  Because she is in the control group, she will not be able to do Botox or CIMT until after the six months in the control group.  That means she wouldn't be able to have CIMT until September of next year (we haven't officially been told this, but that's what my math is telling me).  Given she will be starting Kindergarten in September, we have some hard decisions to make regarding the study and when we return for therapy.  We are waiting to get more information from the study coordinator and will then make a decision.  I know it sounds like we have a lot of time, but with new patients doing therapy for the study, it will be harder to get on the schedule.  And given she met almost all her goals that we set, it's clear once again that this program has been a huge success for Reagan.  We can't thank the team there enough for their patience with Reagan as she struggles through hard days and tries to assert her independence.  I'm sure they are used to it, but wow, they have a hard job!  There are many angels who have made an impact on Reagan's life.  I firmly believe Ms. Ruth and Ms. Sue fall into that category.  They will forever be a part of Reagan's past that is shaping her future.  The Bischoff Family will forever be thankful for this experience.  The smile on her face says it all!

We made it back to Northern Virginia in time to go to Back-To-School night for Cole tonight and we will go to his Open House tomorrow.  He already met his teacher, Ms. Carolann and her assistant, Ms. China, since Reagan was in that class last year at Potowmack Elementary School.  Stay tuned for First Day of School pictures next week!

Saying good-bye is always hard...

Since February 2011 Cole has been visited by every month by Heather, a therapist with Loudoun County Early Intervention.  She walked into our home at one of the most difficult times of our lives.  We had just lost our daughter, our son was still not stable (he was back in the hospital twice within the first four months at home), and I was transitioning into being at home full time with my two children.  She was always patient, kind, and supportive.  She knew when to listen and when I needed direction.  I always appreciated her honesty, even when the information was something she knew would be hard for me to hear.

Our visit Friday was no different.  She provided input on activities that I should continue to do to help Cole.  We reminisced about how far he has come since her first visit.  We talked about how hard we worked to get him walking (at 21 months).  We talked about his challenges and the complexity of his delays.  He continues to struggle with activities such as a shape sorter that are usually mastered around 18 months.  It is expected that the Cortical Visual Impairment (CVI) is causing a challenge in rotating the objects.  We have several activities we will be doing to try to improve his success with these tasks.  Additionally, I officially learned how to apply the
kinesio tape and I am hopeful we will see improvement.  We started our sit ups today - our goal is 60 per day.  This will help develop the stomach muscles and hopefully increase his abdominal muscles and reduce the posturing he currently has.  Given Cole will start school on Tuesday, he is required to transition from Early Intervention to the Child Find Program that is supported by the Loudoun County Public Schools.  He will start preschool at Potowmack Elementary School.  It was hard to say good-bye to Heather, but are very happy that Cole is able to start school next week.

To give the kids a little fun Johnny and I decided to overhaul both kids' rooms.  We carried the race car theme for Cole from his bed onto his walls and built a new shelving system.  Reagan was also given the opportunity to choose a new bedspread.  And although she chose it ALL BY HERSELF...mommy is very excited about her love for horses.  Another point worthy of mention....wait for it....after FOUR YEARS of loving nothing but pink, Reagan declared this week that her new favorite color is Green.  Not exactly sure how long that will last, but very fun that she is branching out.  Cole has

decided his favorite color is anything except green.

And mommy had a little fun with a get-away weekend with some girlfriends to Ocean City, MD.  It was nice having a little "me" time and relaxing on the beach.  Thanks to Patti, Ashlie and Amanda for making it a fun weekend!  We are off to Charlottesville again tomorrow and look forward to wrapping up Week 4!

UVA Week 3 and Happy Anniversary to little Reagan Rose!

Wow - what a week!  It started Sunday when Reagan and I were checking out at Bed, Bath and Beyond and she asked the checkout clerk why she didn't have a left arm.  I cringed hoping this woman understood my daughter's intentions weren't malicious.  She looked at Reagan and said, "God made me this way so I can spread His glory."  She was referencing John 9 when Jesus gave sight to a blind man and he spread the word about God's miracle.  I explained Reagan's short story and as we walked away I gave her a hug and thanked her.  She turned and said, "she'll have more questions...I promise you that."  She was right.  Reagan kept asking why God didn't give her an arm.  And I looked at Reagan and said, "you know how sometimes it's hard for you to use lefty?  You need to thank God that you have lefty. There are many people who have a hard time just like you."  As I put her in the car with a tear in my eye I couldn't help but think about this woman's mother and how amazing she must be to have raised such a positive person.  Such a good example for Reagan.

Our day ended Sunday with dinner at Delia's, one of our favorite restaurants.  As we were eating a couple sitting across from us went to leave and the husband stopped to say hello to Reagan from his wheelchair.  We learned that he fell 25' from a ladder and broke his neck leaving him a quadriplegic.  When we shared Reagan's story, he looked at her and said, "I've worked for over 2 years to be strong enough to just sit in this wheelchair.  Keep working hard at therapy and you'll see progress too."  It was as if God knew we could use a little support to kick off our week.  Another amazing witness to remaining positive through adversity.

As if two messages weren't enough, good things come in three's right?  We were back at Bed, Bath and Beyond Monday returning our purchase from Sunday and found a little boy with a shaved head sitting on the floor.  A little worried he was lost I started talking to him and quickly realized he had a shunt just like Cole.  Unfortunately he didn't speak English, but he did want to be friends with Reagan and Cole and started following us around the store.  Reagan quickly asked, "why does he have a bump on his head."  I quickly said, "Cole does too honey."  Again, an onslaught of questions about why he has the bump.  As I was washing her hair tonight she said, "mom, is my hair bumpy?"  It took me a minute to figure out what she was asking, and when I said no she asked, "but why does Cole have a bump and I don't."  So many good questions that are so hard to answer!! I wish Cole was old enough to understand what he and this boy had in common.  In speaking with his mom, though, her son has cancer and it's not operable. The shunt is releasing the pressure from the cancer.  My heart broke for her imagining how hard her journey must be.

Still soaking in the meaning of all these people we met, we headed back to Charlottesville and had yet another great week at the Kluge Children's Rehabilitation Center!  We started Tuesday with our traditional ride around the hallway on the bike.  I have found it is an excellent way for Reagan to transition into our week and give her some sense of being in control over what she is doing.  She loves riding the bike and has gotten very good at it even though she is pushing with one hand in a cast.  We spent much our day Tuesday with Ms. Ruth making chocolate chip cookies.  As I've said before, you can make any task take twice as long if you have the "casted one" do all the activities without stepping in to help.  That includes opening all cabinets, getting out all the utensils, measuring and pouring all ingredients and cleaning everything while the cookies are baking.  Reagan had a great time and although in a much better mood than the previous Tuesday, she was still exhausted by the end of our session.

We were settled into bed Tuesday night at the hotel when Daddy called and asked Reagan if she wanted a good night hug.  And SURPRISE!  He was at our hotel door!  She was very confused when I opened the door and he was on the phone and in her room at the same time, but she was super excited and couldn't wait to tell him all about her day.

Johnny took a vacation day Wednesday so he could spend it with us in Charlottesville.  Reagan was excited to introduce him to Ms. Sue and she quickly started working on her painting project on the window.  She decided she wanted to paint pink and blue butterflies and dragon flies.  She also had a great time cleaning up her mess.  Given she can only carry objects with her left hand, she took several trips from the hallway into the kitchen to clean up the brushes, towels, paints and stool.  With the increased range of motion from her Botox we have spent a great deal of time working on her pincher grasp and trying to build up the muscles in her hand and wrist to maintain the functionality that she now has.

After therapy Wednesday morning we met with the study coordinator and doctor for the CIMT Research Study that UVA and VA Tech are conducting.  UVA is looking for 50 candidates with hemiplagia (limited function of one side) to participate in the study over the next few years and after meeting with us, they said Reagan is an excellent candidate.  There are four treatment groups and one control group for this research.  The research will attempt to provide data that supports whether longer exposure to casting increases the effectiveness of the therapy.  There are many theories on this around the world and within the United States.  Reagan was randomly assigned to the control group.  We were very happy with this outcome but it does mean we have a lot of decisions to make.  First, it means she will only receive her current therapy at home for the next six months.  During that time there will be several assessments to measure her progress.  At the end of her participation in the study (after 6 months) she is given the opportunity to receive one of the treatments that the other groups received. The four options are as follows:

• Option 1 = part time splint for 2.5 hrs/day 3 days/week for 4 weeks  
• Option 2 = part time splint for 3 hrs/day 5 days/week for 4 weeks
• Option 3 = full time cast for 2.5 hrs/day 3 days/week for 4 weeks  
• Option 4 = full time cast for 3 hrs/day 5 days/week for 4 weeks

Johnny and I will be discussing the alternatives and which option may be the best fit for Reagan and the family.  Participation in the study also means that Reagan will not be able to have any more Botox treatments while she is participating in the study.  Given we haven't even started discussing whether we will do the injections again, we are willing to accept this condition of participation.  

After our appointment we went to lunch and then treated Reagan to seeing the Disney movie Planes.  Although it sounds like she was relaxing and not getting therapy time don't you worry!  We made her eat the popcorn by herself and she did a great job with lefty!!  After the movie we took a quick trip down to the Pedestrian Mall and Reagan rode the carousel.  Then it was back to the hotel for dinner in bed and an early night with lights out.

Thursday was another great day.  Reagan spent time playing a game where she made faces, she played another game where she dressed momma, daddy and baby bear, she played outside in the new sand box and practiced her balance on the big platform swing inside.  The large platform swing has been a staple for Reagan for several years in therapy.  Not only does she love to swing, it forces her to prop herself with her left arm and weight bear on her hand.  It also forces her to hold onto the rope with her left hand.  She had a lot of fun doing "crazy shake" with Ms. Sue but did ask to go take a nap several times throughout our session.

We also celebrated an anniversary Wednesday - it was the four year anniversary of Reagan's brain surgery.  Although we have had several very difficult days as a family since her surgery, this day ranks as one of the worst.  It's hard not to relive the feelings of that day and honestly I want to relive them.  I want to remember how hard that day was.  How nauseous I felt.  How helpless and hopeless we felt watching her being wheeled into the operating room.  She had stitches soaked in blood from just behind her hairline on her forehead in an arc around her head to below her ear.  She had an IV in every limb and one coming out of her diaper.  Wires, leads and a feeding tube.  She had abrasions on her forehead from the clamps holding her still during surgery.  She had burns from the EEG leads from the last 20 days.  Her head was so swollen her right ear was almost 45 degrees on the side of her head.  Such vivid memories even after four years.  I want to remember that day so that every day I thank God for being where we are today.  I don't ever want to take for granted the person who she has become.  I will never forget the night we got her MRI results and the neurologist said, "I"m sorry, but we think she has schizencephaly."  When we asked what that meant she said, "we don't expect she will ever be able to walk, talk or have any cognitive function."  We lived with that expectation for almost two days.  Every dream for her shattered.  Every excitement for her future crushed.  No first day of school.  No graduation.  No first date.  No best friend.  No wedding.  All the things as a mom you think about as you grow this precious baby in your belly for 40 weeks.  We lived with some degree of those fears for almost two years.  It's hard to explain that feeling...but it's one that Johnny and I will never forget.  We feel so blessed to be where we are today and we thank God for the amazing medical team who has cared for her.  We thank God for choosing to help her through the surgery.  We thank God for giving her the personality to persist even through the frustration she feels some days.  And I thank God for the amazing partnership that Johnny and I have to walk this journey hand in hand.  Every time Reagan looks up and says, "mom, I can't do that with lefty.  Will you help me?"  I say, "honey, we're a team.  You. Me. Daddy and Cole. You will never be on your own - we're all in this together."  Thanks to each of you for being part of the Bischoff team - your support has been unending and it helps us remember there is good in the world.  My prayers tonight go out to all the families we know who have had those dreams shattered and continue to persist through the difficult days they face on their journey.  

Kinesio Taping Like an Olympiad and CIMT Week Two Is Complete!

After several conversations with Cole's therapist and reinforcement from Reagan's therapist (and a friend who swears by it), we decided to try kinesio taping for Cole's low tone.  He came with us on Monday for Reagan's physical therapy session and the therapist applied the tape across his belly.  There are numerous ways it can be applied for different issues, but generally it works by activating weak muscles and encouraging Cole to recognize and use the underdeveloped muscles.  The tape is applied and left on for three to five days.  It can be left on for baths and has to be removed with baby oil (it's extremely sticky).  Although it has been used for several years, it became more widely used after the Beijing Olympics in 2008.  I am so excited he hasn't been bothered by the tape - I was very worried it would irritate his skin or be scratchy.  Only time will tell if it will help him correct his posture.

We left for UVA on Tuesday morning and were much more prepared this week.  Dropping Cole off at my sister's was a little harder this week.  Cole definitely knew what was coming and threw those little arms around my neck, stuck out his lower lip and the alligator tears started.  But my niece Emily took it all in stride and got him playing with the bunny and turtle so he was distracted.  It still breaks my heart to leave him, but I know this program is an amazing opportunity for Reagan and we're already half done!  Cole had a great time this week at the Loudoun Valley Band Camp again and apparently is quite the ladies man with the high school girls!

I was feeling good about the week having gotten to Charlottesville early enough to check into the hotel and get organized.  I packed lunch so we could relax there before heading to the rehab center. Reagan unpacked her "kids" in the hotel and we were off to therapy. Unfortunately, Reagan was very tired and our first hour was a disaster.  Luckily Ms. Ruth and Ms. Judy didn't give up and turned things around so our day wasn't a total loss.  Unfortunately, however, I have no pictures since she was doing much better when I wasn't in the room.

After our tough day, I decided we needed to have an early dinner and head back to the hotel to get into bed early.  We were in bed with lights out by 7pm and she was asleep by 8:15pm.  I was very hopeful this would mean a better mood for day 2 and I was right!  We had a great day and she spent time watering plants, painting stencils on the pots she painted last week, and using stamps to make pictures for Daddy on an easel.  All these activities are geared toward increasing the strength in her left hand.  And best of all....drum roll please...Reagan has started pointing with her left index finger!  Although it's not straight, she is able to isolate it somewhat.  This is the first time Reagan has been able to manipulate this finger and it shows huge progress.  She still isn't strong enough to push buttons with it, but being able to isolate it is definitely a first step.

I promised Reagan if she had a good day at therapy Wednesday I would take her back to the Bounce-N-Play.  So we went straight there, ate a little lunch at the cafe and she played with some new friends until it was time for dinner.  She was thoroughly exhausted but we still enjoyed dinner at a great Mexican restaurant.  She even had the energy to dip her chips in the queso with lefty!

After such a successful day 2 I decided we needed a repeat of the bedtime routine.  So we were back to the hotel and in bed by a little after 7pm and she was asleep just after 8pm.  Luckily this made for an excellent day three!  On day three Ms. Sue and Ms. Judy spent a lot of time with Reagan outside.  The weather this week has been amazing!  We decided to finish up our potting project and put dirt and plants in the newly painted pots.  It always amazes me how we can turn every activity into therapy!  From carrying the pots, scooping the dirt, watering the plants, to sweeping up our mess.  Reagan had a great time and couldn't wait to show them to her Daddy.  She also spent time hitting a birdie and balls with a badmitten racket.  It was a great strengthening activity for her wrist and she did really well gripping the racket.  We also brought out the shaving cream and mirror again.  Reagan did a great job getting all her fingers out and drawing on the mirror.  Needless to say we had a great week and look forward to going back on Tuesday.  Although she still tries to convince me, "mom, I promise I'll do everything with lefty all day if you just don't put on the cast" she doesn't fight putting it on anymore and is prepared for the routine.  She is still a little shy when people ask her about the cast, but the new leopard print has been a big hit!  To give you an idea of how tired she has been, when we got home yesterday she actually asked me to put her in bed for a nap!

As many of you know, a butterfly in the NICU represents a baby who has lost a sibling.  For 97 days while Cole was in the hospital we saw Kendall's butterfly by his name on the nursing assignment board.  This has forever made butterflies very special in our family.  When we arrived at therapy this morning we were greeted by a beautiful butterfly.  A day doesn't go by that I don't wish Kendall was still with us.  Reagan recently said, "hey mom, I wish I had a sister."  With a deep breath I said, "me too honey."  She doesn't understand yet, but one day she will.  And knowing that our angel continues to visit us is a good reminder that Kendall is up in Heaven helping us through the hard days and reminding us to smile when our day seem very tough.

Here we are again UVA!

We just completed week one of the UVA Constraint Induced Movement Therapy !  Cole was lucky enough to stay at my sister's house.  My niece Emily took him to play with the instruments at the Loudoun Valley band camp (my sister volunteers there and Allison and Timothy play in the Marching Band), picked fresh corn with Grandma and Grandpa and fed the husks to the cows.  Between the music, animals and tractors he was happy as could be and didn't want to leave today.

Because the housing for the UVA Kluge Rehabilitation Center was shut down, we decided to stay at the Holiday Inn.  They provide a discount for patients and we have completed a scholarship application and hope to receive reimbursement.  Reagan has therapy Tuesday, Wednesday and Thursday every week in August.

Knowing what to expect, I hoped this week would be easier than it was.  Reagan was excited to see everyone again and knew exactly what to expect when the new cast was being made.  Unfortunately, the fun quickly turned ugly when she realized she would be wearing the cast for a month.  Not being able to fall asleep either night in the hotel also made the experience harder because she was not only physically exhausted, but also emotionally exhausted because her brain was working harder than usual.  If you remember from last time, the therapists said constraint therapy is exhausting because the brain and body are having to work harder to really focus on using the parts of the brain and muscles that don't normally get used.  Both therapists were very happy to see the positive progress from the Botox treatments and were hopeful that we could build enough muscle throughout the next month to keep some of the improved function even after the Botox wears off.

On Day One Reagan met with Ms. Ruth and Ms. Judy and had her new cast made.  She was very excited to have a thumb this time!  She also completed several assessments to determine her "going in" position on the therapy evaluations.  This involved several bimanual activities including making tea for everyone!  We also spent some time riding on a bike outside, playing on the swing and watering plants in the greenhouse.  After our therapy session we went to the Bounce-and-Play and she met some new friends and played for several hours.  She was very excited about the new jaguar print co-band that she was able to use for her cast.  

Reagan had a really hard time falling asleep the first night so we had a tough morning on Wednesday. After going to Michael's to choose pots to paint at therapy, I drove the backroads of Charlottesville and she sleep in the car.  We met with Ms. Ruth and Ms. Judy at noon on Day Two and started therapy with lunch.  It's amazing how much time that can take when Reagan has to do every step from finding spoons, to opening her Mac and Cheese and following all the directions to put it in the microwave.  One thing I have learned is that everything can be therapy if you focus on it.  It always takes me a few days to slow down and let her do everything.  It's a great feeling when you realize you don't have to be in a hurry and if it takes 5 minutes to pull the top off the mac and cheese that's ok.  We also spent time mixing pink paint (they only had red and white so it was a great learning experience and therapy) and then painting the two pots we purchased.  She plans to finish painting and decorating them and putting plants from the greenhouse in them next week when we go back.  

After therapy we went to the Downtown Mall / Pedestrian Walk and visited the Virginia Discovery Museum.  We went last time we were in Charlottesville and Reagan loved the interactive activities there.  She met several friends and played dress up, pushed the letters in the hallway and played in the pretend Panera.  She also spent time feeding Star (her new unicorn).  I tried to focus on slowing down and giving Reagan time to do everything herself.  She loved putting Star in the stroller and pushing her around...which is really hard with a cast on one hand.  

Reagan got a lot of compliments on her jaguar cast and when people asked, "what happened" she would say, "I got a bug bite" and show them the huge bug bite on her leg.  Honestly, this bug bite almost sent us to the hospital.  It was HUGE...I could have sworn it was a Taradactyl bite.  Needless to say this was super confusing to most people.  But when they asked, "why do you have a cast on?" She would sheepishly respond, "my mom told me we have to make lefty stronger."  Which probably just confused people even more.  I haven't quite figured out the perfect response for her...but I'm sure I will by the end of the month.  We enjoyed a really nice dinner outside at an Italian restaurant.  I gave Reagan all the pennies in my wallet with the one condition that she had to throw them in the fountain next to our table with her left hand.  She did a great job and almost all of them ended up in the fountain!

Day Three we spent time with Ms. Sue and had a great time making old fashioned ice cream.  She got out all the utensils and ingredients, got the ice from the ice maker, stirred the ingredients together, and churned the ice cream maker from Sue's Grandmother (shown in the lower right of the picture).  Although she had a great time making the ice cream, she was very frustrated by her spoon when it came to eating it and decided she didn't want any ice cream.  And although it took a lot of coaxing, she did help clean up all the tools she used.

Although an emotionally exhausting trip for both of us, Reagan worked very hard and overall it was a good week.  I did see an interesting shift, however, in the way Reagan approached the experience.  In March Reagan got frustrated but I found that she fought trying the activities and was more stubborn going into the activity.  This week, instead of being frustrated and not trying an activity, I found she got frustrated after she tried and couldn't do it.  This was especially the case when trying to eat.  I noticed at lunch today as she was trying to eat mac and cheese with a spoon she kept eyeing a woman who was watching her struggle.  She got very angry and refused to eat.  I find the shift interesting because  cognitively I think she is recognizing her challenges in a different way and is more socially aware of people watching her (whether it's a stranger, her mom or her therapists).  Last time when people asked what was wrong with her arm she would tell them the cast was to make lefty stronger.  She believed it unequivocally.  Now she is trying to talk through why she shouldn't have to wear the cast with me whereas last time she cried and got frustrated and said she didn't want to do it, but didn't question why she needed to do it.  She even said yesterday, "mom, I promise if you take the cast off I"ll just do everything with lefty."  She has such a precious spirit and I'm trying so hard to delicately help her achieve more without feeling like there are things she can't do.  It's such a hard balance. And as with many other activites I find being a mom so much more difficult than I EVER imagined.  

The Bischoff's Take Hershey!

Reagan, Cole and I had a great time visiting Hershey Park, PA last week with the Bischoff side of the family - Pop, Rebecca, Jessica, Aunt Vicki, Emily, Alyssa, Leah, Aunt Sarah, Landon, and Luke.  The weather was beautiful and the kids had a great time riding rides, playing games, splashing in the water park and sharing ice cream.  It was a fun day and great to see all the cousins playing together.  It will definitely be a memory the kids will treasure for years.  And definitely needs to become a new yearly tradition!

After a fun day at Hershey I headed to St Louis for a client meeting to review the materials for an executive forum I have been developing.  It was a great meeting and we are getting very close to finalizing the content.  Timing is impeccable given Reagan and I leave for Charlottesville Tuesday.  I have been working hard to get the majority of the changes completed before we leave.

Unfortunately the day before I left for St Louis I learned the housing for the Kluge Rehabilitation Center at UVA was permanently closed.  I emailed the contact we have been coordinating with and she confirmed this is true.  Although I'm not sure why I wasn't notified, they did provide a list of local hotels that provide a negotiated hospital rate and she provided a scholarship application that I have completed to see if we are eligible for reimbursement.  Although we will  now need to pay for the hotel (8 nights) and will not have any cooking capabilities, we are grateful there may be funding to support some of the costs we will incur.

Although it is daunting to think about making the trek to Charlottesville every week for the next month and being away from Cole and Johnny, we are hopeful we will see some amazing progress again with Reagan.  And on a positive note, Reagan and I both know what to expect which will make our journey significantly much less stressful.  Pictures will be coming soon!