Reagan's clean bill of health - Cole's annual CT scan

It has been a busy couple weeks and I don't know where to begin!  Reagan had an appointment with her neurologist, Dr. Pearl and he said she looks great!  When we pulled up to the office she said, "is this going to hurt?"  Of course I told her, nope, we're just here to say hello to Grandpa's friend!  After discussing several of our concerns, he recommended we have blood work done to rule out any issues with her thyroid causing her overheating issues.  We're hoping it's nothing, but he felt like we should check it out.  Breaking the news that she had to give blood was torturous.  Although not as bad as having to tell her that the tech blew the first vein and we had to do it twice.  She's such a trooper!

We also discussed the constraint induced therapy and he is very supportive of her participating in the UVA program.  We discussed the electrical stimulation technique and he wants us to get a second opinion from a physiatrist.  We had been hoping to avoid this specialist, but we're going to see Dr. Evans at Children's.  A physiatrist is a physical medicine doctor - basically a therapist with a medical degree.  She will be able to better ascertain whether the electrical stimulation could cause Reagan's brain to be more predisposed to having seizures.  We got the first available appointment at the end of May.  I guess because she is in the head of the department she is in high demand.  Given her PT isn't in a hurry to begin the electrical stimulation we will wait for that appointment and see what the doctor says.

We also learned that Reagan will probably not be able to attend the Loudoun County Public School program next year.  She is apparently too high functioning for the special needs classroom - great news right?!  We are very happy she is doing well, but would like to enroll her in the Reverse Inclusion program at the same school.  This program is setup to include both children with special needs [who have an Individual Education Plan (IEP)] and children who are normally developing (anyone can apply who has a child who is 4).  Unfortunately we were told that Reagan can't participate as special needs because it would mean increasing from 3 days to 5 and they can't justify that need.  She can't qualify for normally developing because she has an IEP.  We are very disappointed that she is being told she can't apply like other children because of her handicap and plan to research our options.  I visited with the director of the new Compass School in Ashburn and LOVE the principles and methodologies they are implementing so that may be a good fit for her.

Unrelated to the kids, I finished the bulk of a contract I've been working on for several months.  We completed the build of the Comcast Executive Briefing Center in Naperville, IL and hosted our Grand Opening this week with several hundred people over three days.  I look forward to completing the project and finalizing the processes and support systems necessary to run a successful program.

Cole had a follow up CT scan at Fairfax Hospital today.  We were lucky to avoid anesthesia, but that meant he had to be bundled, taped to the table and forcibly held down by his mom.  It was torturous seeing the look of fear in his eyes, but we are hopeful he was still long enough to get a clear scan.  We will meet with his neurosurgeon and neurologist in the next two weeks to review the results.  We have no reason to be concerned, but it will be good to have reassurance.  We were also able to visit with several of Cole's nurses and doctors while we were there.  Such an great team of people it took to get us to where we are today - we are blessed to be surrounded by so many amazing professionals!!

On another note, we completed the paperwork for Cole to enter the Lo Co system and have an appointment with the county this month for his initial assessment.  I will keep you updated, but we expect that he will be admitted based on his visual disability.

Well that's about it for now!  Spring is around the corner and I hope to have more non-medical updates as we get out of the house a little more!

Reagan got into UVA! Go hoos!

It is my dream that one day Reagan will be blessed to go to a college as prestigious as UVA!  Until then, she will start understanding the importance of studying hard by attending the Constraint Induced Therapy Program at UVA in Charlottesville, VA.  The Kluge Children's Rehabilitation Center (KCRC) in the UVA Children's Hospital is very well known for its research and treatment for children with cerebral palsy.  We are nervous about the logistics and the emotional roller coaster but know that we are giving Reagan an amazing opportunity.  Reagan and I will travel to Charlottesville Tuesday mornings starting March 5th and have therapy that afternoon.  We will have therapy Wednesday and again Thursday morning and then drive back home.  We will make this trip each week for the month of March (four weeks).  She will be fitted for her right hand cast (dominant arm) on the first day and then wear it 24/7 unless she is bathing or sleeping.  This will encourage her to realize she can use her left hand for hard tasks like eating, playing, getting dressed or going to the bathroom.  Research shows that the brain actually starts learning to ignore the dominant hand thus making it more natural to use the less dominant hand.  Our hope is that her brain will remap or build new synapses to increase the use and strength of her left hand.  Please pray for all of us as we embark on this challenging journey!

We also had a busy week with a home visit from Reagan's teacher and therapy for Cole with Early Intervention.  Reagan's teacher said Reagan is doing very well socially and cognitively...so well that she doesn't think her current classroom will be a good fit for her next year.  This is excellent news.  She does think Reagan needs to continue receiving occupational therapy, however.  We have two choices that we are currently investigating.  First, we could put her in the Reverse Inclusion class at her elementary school.  This would allow her to remain with a few of her peers and half her class would be "normally developing" children who may also be in her classroom for kindergarten.  Unfortunately given she needs to keep her Individual Education Plan (IEP) she does not qualify for the "normally developing" registration.  But because she is so high functioning, they can't justify including her as a special needs child in the same room.  We are trying to determine what options are available.  The second choice is to have her go to a private preschool.  More on this over the coming months....

Cole had an excellent session with Heather from Early Intervention.  She is very happy with his progress and very happy to see that he is counting to 15 and singing his alphabet.  She does agree with my concerns about his challenges identifying colors and animals.  We're both hopeful that this challenge is something he'll work through over time.  If not, its possible it is because of his vision issues.  We also discussed setting up the initial meeting with the Loudoun County to start his transition from Early Intervention to Child Find (Loudoun County Public Schools Early Childhood Special Education).  I'm hoping we'll setup the initial evaluation before we head to Charlottesville, but Cole will not start school until the regular school session in September.

We're looking forward to the excitement of 2013 and more updates over the next month as we meet with both neurologists and neurosurgeons.

Reagan hits the slopes and tests e-stim!

What an exciting way to start 2013!  We were able to schedule Reagan for an adaptive ski lesson at Wintergreen Adapative Sports.  They were nothing short of amazing. She had four instructors who were very knowledgeable about high tone and how to accomodate the support during Reagan's lesson.  She was very shy at the beginning, but quickly realized how fun skiing can be when you really get moving fast.  From the moment she saw the chair lift she was determined to go for a ride!  After 2 hours of practice she finally convinced the team to let her give it a try.  She did really well and has been talking about it all week.

We also had a busy day today.  Reagan had her regular physical therapy session with Jill this morning and an evaluation with a specialist, from Bioness, an electrical stimulation foot drop system.  The specialist put a small electrode inside Reagan's shoe with a chip that clipped on the edge of the shoe.  She then velcro'd a band (we called it a bracelet) right below Reagan's knee.  Every time Reagan picked up her foot the system sent an electrical impule to the brain tell her toe to lift.  It took a while to get the impulse strength high enough.  She decribed the feeling as "tingling" and after it came off Reagan said she would be willing to try it again.  Unfortunately Reagan's therapy was not able to be at the appointment so she would like to see how it changes her gait before we invest in the solution ($7,900 only partially paid by insurance).  She is still very young and it's important that she wears the device if we choose to try it.  The theory is that over time, the brain develops new pathways to raise the toe and she wouldn't need the device long term.  We've decided to do a little research on "e-stim" (electrical stimulation) and see what outcomes can be expected.  Additionally, we need to consult with Reagan's neurologist.  Since the device sends an electrical impulse to the brain...and a seizure is an electrical impulse being sent to the brain...we need to talk through the potential concern that this could "excite" certain areas of the brain that we don't really want to "wake up".  Timing is perfect - we meet with him in two weeks! 

Saying Good-Bye to 2012

Although very busy, the Bischoff Family had a wonderful holiday season.  Johnny was able to take more than a week of vacation so we had a lot of fun as a family.  Henry the elf arrived in the Bischoff household with the advent calendar on December 1st.  These were two new traditions that Reagan loved immediately.  And such great motivation to get her out of bed in the morning!  Reagan asked Santa for Rex the Toy Story dinosaur and a mermaid barbie doll and Cole was very excited about the new roller coaster and noisy trucks that he found in the living room Christmas morning.  It's amazing how every Christmas gets better when you have little children who get so excited.

We took Cole to his first theater movie, Monster's Inc.  We were hoping he would love the big screen and dark room.  He loved it so much he quickly fell asleep and took a great nap!

We had a few weeks off from therapy and doctor appointments and it was a nice relief from a hectic year.  We started 2012 with the hope that our family might avoid any sleepovers at the hospital but didn't get our wish.  At least one person in our family has been hospitalized every year since 2008.  We are hoping for a hospital free 2013 ! 

One of my favorite parts of the new year is being able to move the the insurance Explanation of Benefits file and the claims reimbursement file to the archive box in the basement.  My four month battle with reimbursements for Reagan's therapy hasn't quite ended so this will be delayed this year.  I did get notification yesterday, however, that the Medical Review board has finally approved Reagan's therapy and we should be receiving all the reimbursements owed since September.  I fax a claims report every month that generally includes about 18 pages of documentation.  It's amazing how quickly the paperwork fills the filing cabinet!  This year Reagan had 78 appointments, one hospitalization (with EEG), and one MRI at the hospital.  Cole had 27 appointments and one CT at the hospital.  So that's 108 in 2012 for the Bischoff family (not including mom and dad).  We are glad to be moving into 2013 and look forward to the excitement it will bring.  In the next six weeks we have two neurology appointments, two neurosurgery appointments, one CT scan, one evaluation at UVA and an adaptive ski class for Reagan in addition to therapy and swimming.  Updates to come!  We wish each of you and your family a Happy New Year filled with health and happiness.