Friday, April 19, 2013

DBVI, IEP, BFDWH...ENUF acronyms!

Wow - a busy month for sure.  We met with the Department of the Blind and Visually Impaired (DBVI) and have officially registered Cole with their program.  This program will be able to provide Cole any necessary assistive devices once he is in the Loudoun County Public School system.  They are also going to send a light box with other tools we can use for vision therapy.  Light therapy is different from Vision Therapy (which we researched in 2011) and uses specific frequencies of visible light projected into the eyes to enhance visual efficiency and visual information processing.

We also met with the Occupational Therapist with Loudoun County today to evaluate Cole's need for OT services next year.  This is the third of three interviews.  The first was the intake appointment with Child Find and the second was Cole's vision assessment.  Although the therapist was not able to conclusively commit to providing services, she did say that she felt he could benefit from services.

After the OT evaluation I had a meeting with Reagan's teacher and vice principal to review her Individual Education Plan (IEP).  We confirmed that we will send Reagan to Compass School next year instead of sending her to Potowmack Elementary.  She will continue this year with her current services.  After some negotiations, it was determine that next year she will receive 30 minutes of OT each week, 15 minutes of PT each week (I will take her to the school for these services) and 30 minutes of resource support at Compass each week.  The resource teacher will work with her in the classroom and work with the Compass teachers to ensure they are able to accommodate for her special needs and encourage her appropriately with tasks that are difficult for her.

We had several exciting March of Dimes fund raisers this month and look forward to the walk on May 5th.  Here are two preview pictures from our photo shoot fund raiser with Kara Smith Photography.

We have a great team and are exited to share the 2013 shirt design in just a few weeks!  KeCoRe LLC is also staying very busy with a contract extension with Comcast and a new contract with Boeing to develop an executive forum.   I will be headed to Chicago Sunday for project kickoff meeting all week.

I am always amazed when I see how much changes in a year.  On Monday, April 22nd last year Reagan was back in the hospital having seizures after being seizure free since her brain surgery more than two and 1/2 years before.  Although the year has flown by and Reagan is stable on her medications, we hope to start a new record of Bischoff Family Days Without Hospitalization (BFDWH).  The last year we had more than 365 days without a hospitalization was 2007.  That might sound like a lofty goal after 6 years, but we are ready to kick off Project BFDWH on Monday !


Monday, April 1, 2013

Reagan graduates from UVA!

I can't believe I haven't had time to post an update yet!!  Ok, I'm not surprised...I've been busy with fund raising activities for the March of Dimes walk May 5th, emails are flying around getting prepared for the Sterling Volunteer Fire Company 11th Annual Cascades 10K Fire Chase on May 25th, we are planning some new events for Preemies Today this month, I'm still working on a contract for Comcast, oh, and I'm still a wife and mom.  I'm so lucky my family keeps me around!

Well it's true!  Reagan completed her first Constraint Induced Therapy Program at the UVA Kluge Children's Rehabilitation Center on Thursday.  So the big question - was it worth it?  Absolutely!  I asked Reagan Friday morning what she wanted to do and she said, "can we go to Charlottesville with Deena and Tyler?"

Day 10
I'd love to say the last week of the program was a breeze but that was not the case at all.  Tuesday started out pretty rough.  Reagan immediately wanted to ride the bike and when we told her she had to do other activities she was not a happy camper.  Although it took a while to get her redirected, Ruth did a great job and we had a successful session.  She spent time painting, placing sticky shapes on a mirror and making more teeth for the monkey.



Day 11
After the disaster with the bike on Tuesday, I took Reagan to the therapy facility an hour early to give her time to ride before our session started.  This plan worked beautifully and the bike was a reward for her to ride later if she followed instructions during our session.  Throughout the last month I have tried several times to put a finger on what makes this experience so amazing...what makes it so different...and what makes it worth leaving my son and my husband and disrupting life as we know it.  I have struggled for years trying to find the perfect therapy toys and Wednesday I saw first hand that ANYTHING can be a good way for Reagan to practice and still be FUN!  I'm sure you won't be surprised that making cookies could be good "lefty work".  But let me tell you, patience is critical.  Reagan literally had to do everything!  She had to open the cabinets to find the cookie sheets and bowls, crack the egg, push the stool to the microwave, push the microwave button to open it and soften the butter, open the butter, stir the batter and drop the dough on the cookie sheets.  Until you try to make cookies with one hand, you won't appreciate how hard this task really is.  I encourage you to try it!  

Halfway through making cookies we removed Reagan's cast for 20 minutes to remind her how to use her hands together and most importantly to remind her to use it even when the bigger, better righty is "free".  Sue did a great job reminding me not to clean up - Reagan had to carry the shells and butter wrapper to the trash and wash the dishes.  Although I do make cookies with Reagan, I never have her do all these tasks.  What a great reminder that everywhere you turn, you can make something fun and still get the movement we need from lefty.

After a long day of therapy, I asked Reagan to take a picture with Sue and Ruth since it was our last day all together.  For any of you who know Reagan, she tends to be rather camera shy.  I did get a great picture of Sue and Ruth although Reagan is hiding under the table.  What a great pair!

After our session Wednesday, Deena, Tyler, Reagan and I went for a nice long drive to give the kids a chance to take naps.  We tried to drive to Monticello and Ash Lawn but neither were accessible by car so we enjoyed the country drive and read any historical markers we could find from the car.  After a few hours we decided to make a stop at the Bounce-n-Play in Charlottesville.  What a great indoor playground!  It took several tough attempts for Reagan to climb all the way up through the maze and go down the slide, but once she figured out how to pull with lefty and swing her legs up she couldn't get enough of it!  And Tyler had a blast on the sit-n-spin!


Day 12
Throughout the CIT program we completed the ACQUIREc Therapy Motor Activity Log (TMAL) several times to help determine how well Reagan could complete certain tasks with and without her cast.  This assessment was developed by the University of Alabama where the CIT concept was initiated.  I thought it might be interesting for some of you to read Reagan's goals for the program:  (1) Hold tricycle handles with 2 hands (2) Sustain hold of ropes on swing with 2 hands (3) Left hand will consistently be on the table when seated for meals and/or fine motor activities (4) Left hand will hold/stabilize fork while cutting food with knife in right hand (5) Use 2 hands to form a ball of play-doh (6) Throw a ball 3' with left hand (7) Build 2 block tower with left hand and (8) Isolate index finger to point at a picture.  These activities were chosen at the beginning of the program because they were difficult for Reagan.  The great news is that Reagan can accomplish all but three of these now!

You would think taking off the cast on the last day would have made it really fun for Reagan.  Unfortunately it was the exact opposite reaction.  Reagan was used to using the left if the right was unavailable.  But when the right was "free" she was insistent she didn't need to use it.  We tried to do activities she really loved, but she was certain she didn't need lefty.  Luckily we were able to turn things around and get her playing.  Sue reminded me this is not uncommon for kids at the end of the program.  Reagan practiced playing t-ball and her favorite activity, "riding the cow, Buttercup".  We also fitted her for a Benik hand brace for her left hand that allows her to isolate her pointer finger more effectively.  As you may remember, she already has a Benik brace, but it isolates her thumb.  So your question should be, why both?!  Reagan is unable to use any of her fingers on her left hand to push buttons - although she has high tone in her wrist (muscles are tight) she has low tone in her fingers.  So when she tries to push a button the finger just bends backwards (hyper extends).  The hope is that if she wears a brace to provide additional support that she will build up the strength to be able to use her fingers.  

After a long month of working hard and playing hard, we got in the car and headed home.  And as we drove away from the KCRC for the last time Reagan asked, "where are we going now mom?" When I told her we were going home she said she wanted to stay !  What a testament to a great program, great therapists and a tough kid.  So your next question should be - what's next?  Several parents have recommended participating a CIT program every 6 months.  We have a list of activities to do at home and are putting the cast on for one hour every day.  We also plan to keep in touch with the UVA CIT Program and discuss our options in the coming months.  We have seen such great progress with Reagan choosing to use her left hand and increased strength that we know this program was worth the time we dedicated to it.  The look on Reagan's face when she looks up and says, "lefty did it!" is so rewarding!

We enjoyed being at home this weekend and spending Easter with our families.  We have a busy month in April focused on finalizing paperwork for Cole's application to the Loudoun County Child Find Program (preschool), an appointment with the Department of the Blind and Visually Impaired, Reagan's IEP meeting, back to the regular therapy sessions (7/month), fund raising activities, and work.