UVA CIT Week 3 - March Madness Continues

What a great week!  We are finally getting accustom to the routine and expectations are helping everything work a little more smoothly.  Not to mention, Reagan actually had an < almost > normal slept schedule this week and it made a big difference.  We were also reminded by the therapy team that it is extremely exhausting for kids to use their non dominant hand since it takes a lot more mental energy to send the signals from the brain to the muscle.  Nothing is automatic with their weaker side, so it's much more tiring to do everything.  [Just a reminder - you can click on any of the pictures to view them larger.]

Day 7
We had a great day on Tuesday.  Reagan always loves starting with riding the trike.  She also played a fun game called Cranium.  Ms. Ruth was especially working with grasp and release and pronating Reagan's wrist.  Reagan put the balls in the top of the game, drew a card, turned it over and used a key to open the door that matches the card.  This game was a big hit and we played it several times.  We also played "sink or float" with the balls in the water (also practicing grasp and release) because wet activities are often more difficult because they are slippery.  Reagan also practiced putting shaving cream on the mirror, writing in it, spraying it down and then wiping it off.  This gives her practice opening and manipulating her fingers, squeezing the sprayer (strength activity) and reaching up high on the mirror to increase range of motion.

Day 8
Wednesday was a day all about fish!  She played a game where she held a fishing pole and pretended the blue mats were the ocean.  She was quick to point out that there was an issue with the fishing poles because they didn't have a working reel like hers at home.  That's my girl!  She had to steady the pole over the fish for the "hook" to magnetize to the fish.  She also practiced cleaning shaving cream off the fish with Ms. Sue.  After our therapy session we spent some extra time practicing on the trike by riding it down to the playroom and outside to see the beautiful flowers.

After therapy on Wednesday we had enough time to drive down to the Historic Charlottesville Downtown Mall and go to the Discovery Museum.  Reagan had a blast practicing many lefty activities. There was a really cool tubing system where she pushed in a soft pompom and it got sucked into the tube and shot out the top.  She loved playing with the well and putting the bucket on the hook and crank it up.  She also played dress up, served me popcorn and mailed letters in the pretend post office.  She especially liked to play the tube organ with the floppy paddle.

Day 9
Thursday was a tough therapy session.  She started by riding the trike again and loved it so much that getting her off the bike was a huge fight....thus making any progress after that very difficult.  All was not lost, however, as she did meet the monster!  Ms. Sue would open the tennis ball's mouth and have Reagan pick up small objects and feed him.  So clever!  She also practiced putting the monsters in their "house" and washing them in shaving cream.  After three weeks I finally captured an eating picture that I am willing to share.  As I mentioned before, this is THE most difficult part of March Madness for Reagan.  But she was VERY proud to come home and tell her daddy that she ate her yogurt by herself with lefty. 

After bath she showed daddy all the pictures and talked about what she did during the week.  When it was time for bed I took her to her room and we picked out her outfit for school the next day.  As always, we picked out the cast bandage for the next day to match.  She then asked if she could have the tube from the bandage - I often let lefty play with it after the roll is done.  I told her she could have it Friday morning after we put on her cast.  She looked up at me and said, "well maybe we could just put the cast on now."  A little surprised, I reminded her that if we put the cast on that she would need to wear it to sleep.  In a very matter-of-fact tone she said, "well that's ok mom, because it makes lefty stronger."  And how could I argue with that?!  What better way to know that she understands the CIT program than to hear her explain it.  Although I do believe she sometimes repeats what she hears us tell her, I also believe she is starting to realize she can do more than she thought.  I also believe that she is getting stronger and therefore is doing more than she could before. 

We are excited about finishing the program next week, although it come with mixed emotions since we have seen so much progress in such a short period of time.   And in usual Bischoff style, we are already thinking about the next one!  One more week....

Week 2 - the roller coaster continues

Reagan finished Week 2!!  We're now halfway through the CIT program at UVA and I can finally navigate from Wal-Mart to the apartment without my GPS.  The weather was much more agreeable this week and we are now moved into the apartments and able to leave some things there for next week.  Although not as cozy at the Hampton Inn, it's nice to have somewhere to crash after a long day.  We joke about how we walk up hill both ways to our therapy sessions (literally), but it's very conveniently located over the river and through the woods to the clinic.  Deena and Tyler are in one apartment and Reagan and me are in another one around the corner.  It was a little bit of dejavu from JMU listening to the CXS train passing through at all hours of the night.  And my favorite quote from Reagan when I was giving her the tour of our new vacation destination was, "mom, that toilet is so little and cute!"  No elongated seats in this bathroom!  We have a living room, bedroom and bathroom with a refrigerator and microwave.  It definitely makes our trip more affordable.  Apparently all the furnishings are provided from donations from families who have used the apartments in the past.  It's a little humbling to think how many families have stayed in these apartments traveling a similar journey.  I spoke with a woman in Sterling last week who's granddaughter had brain surgery at UVA last month because her brain was fused to her skull and it had to be surgically separated.  Until I had special children I had no idea how many special children there were in the world....

As most parents feel with special needs kids, this week was another ride on new roller coaster.  Day four was good, day five was exhausting, day six was good and exhausting.

Day 4
On Day 4 Reagan spent more time focusing on her left hand.  The Kluge Children's Rehabilitation Center used to be affiliated with an onsite inpatient facility that housed children after hospitalization.  Last year the University decided to discontinue the inpatient program and those rooms are now empty.  Although funding for this facility has been reduced, it's easy to imagine how amazing it was at one time.  There are both indoor and outdoor pools (now decommissioned), a gymnasium, a courtyard with a rehab greenhouse, wheelchair walk, swings and sandbox.  It was such a beautiful day Tuesday so Reagan and Ms. Ruth repotted a plant from the greenhouse for Daddy.  They also spent time putting spinners in the sandbox, pouring water into the sand buckets, and turning the kitchen table crank to raise and lower the height for lunch.

Day 5

Although we thought we may be able to spend time outside Wednesday, it turned out to be very cold.  Reagan had a hard time falling asleep Tuesday night so Wednesday morning started out a little rough.  She played a really neat Play Doh game where she had to mold teeth and put them in the monkey's mouth.  She got to jump on the trampoline and we practiced throwing the big ball in the gym.  She also practiced picking up different size balls in a water basin and guessed which ones would sink and which ones would float.  One of Reagan's goals for this program is to be able to increase how well she can throw a ball with lefty.  Most hemi's have a very hard time sending the signal from the brain to the hand to tell it when to release the ball.  So it's very common for them to try to throw the ball but it drops at their feet.  We've been working on this for the last year, but it's very frustrating for Reagan.  Ms. Ruth sent the balls home with us Tuesday so we able to continue practicing in our apartment.  I can't get over how much progress we've seen with this activity in the last two weeks.




Day 6

After not getting much sleep the night before and getting the car packed to go home, we headed to our morning therapy session at 9am.  Reagan had a great time washing the ducks and putting them in the bath, blowing bubbles with her new bubble blowing dog that we got on a shopping spree to Wal-Mart Wednesday night and riding the bike.  Reagan tends to like more of the gross motor skill activities than the fine motor skills.  So she likes PT activities like t-ball and bikes much better than OT activities like pincher grasp games.  Most PT facilities have bikes for kids that velcro around the feet so they don't fall off the pedals.  So although Reagan loves it at therapy, bike riding at home has been very frustrating because she can not hold enough pressure on the left handle to keep her bike straight on the sidewalk.  We rode the halls in the clinic giving her enough width to correct her turns and get a lot of great practice.  This is one of her developmental goals to grip the left handle bar.  She is doing well with this task and hope it continues when the cast comes off.  She rode all the way from the therapy room, down the hall to the elevator, down to the playroom on the first floor and back again.  It was amazing to see her hold onto the handle bar with lefty!  I have wondered whether this program would cause her to be more discouraged and point out her weaknesses, but this week again really built her confidence and helped her realize she CAN do things even though she often thinks she can't.  The hardest part is getting her to work hard even when she is tired, especially with eating.  There are many activities we do throughout the day that are therapeutic but she sees them as play.  Unfortunately, eating is easily seen as "right" or "wrong" if the food goes in the mouth or if she drops it so her frustration level increases easily.  I think the cutest thing I've heard her say all week was this morning when we were getting ready to put on her cast.  She said, "hey mom, I was thinking maybe lefty needs a turn today.  Let's put the cast on lefty today."  I laughed and gave her a big hug realizing her wit is going to get her into trouble one day!

Overall we had a good week.  It has been a blessing to have Deena and Tyler to keep us company.  We share our discouragements, we share even the tiny successes, and have an equally obsessive love for fountain soda.  We laugh, we cry and most importantly we "just keep swimming, just keep swimming." 

Cole's Vision Appointment - To See or Not to See

To bring a little non-medical humor back to my blog, I wanted to say that Cole met the Easter Bunny this weekend.  You gotta love this kid!  He wanted NOTHING to do with the big furry white guy.  Disney this Fall should be entertaining!!

I also wanted share a quick update since Cole had his vision appointment today with the Loudoun County Vision Specialists.  The appointment went well and I learned a lot more about Cortical Visual Impairment - one of Cole's numerous diagnoses.  As I've mentioned before, his eyes are able to collect information, but his brain has trouble processing it.  So it's common for Cole to see a mirror and call it a rectangle or see a clock and call it a circle.  That is because his brain is processing one element at a time.  The hope is that over time he will train his brain how to continue to collect information to process what it means.  Although the specialists agree that he has significant visual issues, they are not able to give any information about what they will recommend for his services until the final report is completed.  They also said that given his diagnoses and history, he is doing really well.  I suppose it's all about perspective...

There have been many times in our journey that I am shocked by comments that people make.  Today was no different.  The specialist said, "I think it's very possible he will be able to read."  Ummm....ok.  Funny how I made a broad generalization that because he knows the difference between a pentagon and an octagon and because he can knows many of his alphabet letters that he will one day be able to read.  Apparently that's not the always a good assumption.  As with many of these ah-hah moments, I called my father to get a more in-depth explanation to understand the implications for Cortical Visual Impairment (CVI).  He agrees that Cole is doing so well that he will most likely be able to read.  So although I feel better knowing he will likely be able to read, it has added another item on my never ending list of things that I worry about.  On a positive note, Cole doesn't walk into things nearly as much as he used to and he is getting much more accurate with his colors!  Go Cole!

UVA CIT - Week One!

And the Bischoff Adventures continue!  I firmly believe, life is about perspective.  You can be cranky, angry, and bitter, or you can roll with the punches and not let things get you down.  We've lived that mantra the last few years and this week's adventure was no different.  We made it through snowquestration and our first week in the UVA Kluge Children's Rehabilitation Center (KCRC) Constraint Induced Therapy (CIT) program!

Our trip to Charlottesville started at 8am with a drive to my friend Vicky's house to drop off Cooper (Johnny was in NY this week).  We then headed West to drop Cole off with Aunt Chantelle and rendezvous with my friend Deena and her son Tyler who are also participating in the UVA CIT program.  After smothering Cole with kisses and struggling to leave him behind, we only left 15 minutes late and still arrived in Charlottesville with enough time for the kids to have a quick bite to eat before their first session at 1pm. 

Day 1
Our activities on Day 1 were focused on the kids getting to know the team of therapists, getting comfortable with the surroundings and getting fitted with their new casts.  Reagan was easily motivated by the new purple cast (the one she has now is pink).  She had a fun time playing the piano and bowling.  After our session we were given the keys to the apartment that KCRC owns and rents to patients.  We were grateful to have somewhere to stay given 8 nights in a hotel would definitely add up!  Not to mention, it's in walking distance to the clinic so it's very convenient.  We just finished moving our things into the apartment when the KCRC therapy supervisor knocked on the door and told us he didn't think it was safe to stay in the apartment because he expected the snow would cause power outages.  He reserved a room at a hotel for us and said we should move to the hotel.  And so the adventure continues!  We packed up and moved to the Hampton Inn and let me tell you - we were definitely spoiled by the free breakfast and large comfy beds!
 

Day 2
We hoped to wake up Wednesday to nothing but a little wet pavement but we got 10" of snow overnight and the rehab clinic had no power. Our move to the hotel was definitely a smart decision!  We let the kids go outside in the morning to play before we put their casts back on (they can't get wet so they come off at bath time and to sleep).  Between the wind, the cold and the snow that was still coming down, we didn't stay out long.  Not to mention, we were told we would need to check out of the hotel because they had no available rooms!  The power company reserved all the rooms for their employees to take shifts sleeping.  So after a rather curt conversation with the manager on duty threatening we may sleep in our car, she said she'd let us know if anything changed.  Lucky for us, they had two cancellations and we were able to stay.

The therapists very generously offered to come to the hotel for therapy and we decided to meet over lunch time.  The hotel manager let us use a conference room for therapy....we figure they were protecting those people in the lobby enjoying quiet time to check email and read.  Day 2 was definitely a lot more difficult for Reagan than Day 1.  Eating is by FAR the most difficult part of this journey.  She had several meltdowns on Day 2 and we ended up stopping therapy and going back to our room for a nap.  The excitement from the night before kept her up well past her bedtime and between lack of sleep and the expended effort only using one hand, she was exhausted. 

Day 3
By the third day Reagan started getting a little more comfortable with the routine of putting the cast on in the morning and realizing that it would stay on all day even if she had a meltdown.  Although she went to bed late again on Wednesday night, she did very well at therapy Thursday.  She spent time drawing, moving hoops, taking off her boots, learning to move puzzle pieces to the edge of the table to pick them up (this trick works for food too), and playing t-ball.  The therapists also gave us special easy-eat spoons with almost a 90 degree turn making it easier for her to eat with her left hand.

 






By the end of Day 3 we were all exhausted and ready to head home.  There were numerous times that I questioned whether we were making the right decision to enroll Reagan in this camp.  I questioned my ability as a mom to be strong when I needed to be strong, and when to hug her through the tears when being strong was no longer possible.  By the end of the week, I became more determined to persevere through this journey and see what amazing progress we can make.  I will never forget our dinner at the Chinese restaurant Wednesday night.  Reagan was working very hard at eating her fried rice by herself and she got angry when I tried to help her.  "I CAN DO IT MOM." She had a soup spoon twice the size of her mouth and rice is no easy food for any 3 year old.  I encouraged her and helped when she let me but tried to let her do it herself and ignore the mess being made on the floor.  Halfway through dinner she looked up at me, leaned over and put her head on my shoulder and said, "you're the best mom ever."  As a tear came to my eye I thought, it is a moment like this as a mom that you reminds you it's ok not to be their friend, it's ok to be hard on them, it's ok to be strict, and they will still love you.

Today Reagan went to school with her cast on.  It was Munchkins with Moms day so Cole and I went with her and sat in the cafeteria before school started.  Many of her neighborhood friends asked her what happened to her arm.  She sheepishly said, "it's helping lefty get stronger."  My heart sunk as she realized her friends were confused, but I was so happy they all smiled and said, "oh." I was apprehensive about how hard it would be for her to eat lunch (the teachers push the kids to be independent but do help if asked).  I pack foods that would be easier for her to pick up like veggie straws instead of gold fish.  When I left I gave her a big kiss, told her how proud I was of her, and reminded her "you can do this!"  I waited with anticipation as she got off the bus wondering whether she was going to feel discouraged.  Silly me.  The first thing she said to me as she stepped down off the bus was, "mom, I did everything with lefty all day!"  The smile on her face said it all.  I have been worried that this experience would crush her fragile spirit and make her feel like she can't do things that other kids can do.  That it would bring awareness to the weakness that she so often ignores by creatively compensating.  She often gets frustrated and says, "mom, it's just too hard for left.  I need help."  Or she will say, "mom, when I get bigger will lefty be strong like righty?"  To see the pride on my baby girl's face when she got off the bus today was everything I needed to remind me - as hard as this is, stick with it because this too shall pass...

The babies need you!

Before the craziness of March starts this week with our UVA camp I want to send a quick message with information about the March of Dimes fund raising activities we have in the next two months.  More than half a million babies are born too soon each year.  The money we raise supports programs in our community that help moms have healthy, full-term pregnancies. It also funds research to find answers to the problems that threaten our babies. March of Dimes has raised an incredible $2 billion to benefit all babies since 1970.  March of Dimes research funded the surfactant treatments Cole received to help his premature lungs.  They funded the memory box we received for Kendall.  I often open her box when I'm feeling sad and look at her photo album, her tiny hat, bracelet and footprints.  All put together with funds raised for the March of Dimes.  And although we didn't know it when Reagan was first diagnosed with Cerebral Palsy, the March of Dimes also funds research for cerebral palsy.

Team Bischoff March for Babies
Please visit our team page if you are interested in joining us for the walk or making a donation.  We will be walking at the Fairfax March for Babies walk at the Reston Town Center May 5th.  What better way to kick off Cinco de Mayo?!
http://www.marchforbabies.org/team/t1905229

March 22nd - 31 and Silapda Party
Mother's Day is just around the corner!  I am hosting a 31 Gifts and Silpada jewelry party at our house Friday, March 22nd.  I would love to see you at the house and help raise money for Team Bischoff and the March of Dimes.  I will have food and drinks so come and enjoy the company even if you don't need bags or jewelry!  If you want to look at the catalogs or can't come but still want to purchase items please take a look at the links.
http://www.mythirtyone.com/lblackwell Email lbloves31@gmail.com with your order
http://mysilpada.com/sites/lori.kelly1/private/content/home.jsf

April 4th - Fund Raising Dinner at Lucia's Italian Restaurant
Dine-in, carry out or call for delivery and mention March of Dimes and a portion of the proceeds all day will be donated to Team Bischoff and the March of Dimes.  This is an easy way to help Team Bischoff reach our fund raising goal!
http://www.lucias-italian.com/potomacfalls

We are also partnering with several local companies to help raise money.  Please considering taking advantage of their offer to help the babies!

Sweet from Scratch - We will have cupcakes and cookies available at these events to raise money for Team Bischoff.  Ashlie is also donating a portion of proceeds for all orders if you mention March of Dimes.  Need sweets for Easter or an upcoming party?  You will love her amazing sweets!
http://www.fromscratchcupcakes.com

Kara Smith Photography - We are selling raffle tickets to win a photo shoot with Kara.  Contact me if you want to buy tickets but can't attend the 31/Silpada party or Lucia's Dinner.  Check out her pictures if you haven't already!  https://www.facebook.com/karasmithphotography?fref=ts

Little Peeps Bows - Krysta is generously donating proceeds from her March of Dimes inspired bows. Go to her site and take a look - she has some amazing purple options that would be perfect for Easter!  https://www.facebook.com/LittlePeepsBows?fref=ts

If you have any questions or have trouble with any of the links please let me know.  We are very blessed to have been supported by the March of Dimes and want to help others who inevitably find themselves on this journey.  Please share this information with your friends and family.  As always, thanks for continuing to share in our journey and our passion to help others.