And we've lost yet another member of Team Bischoff

How is it possible we have so many updates after only a few short weeks?!  Luckily we have a little fun with the medical updates this time.  The third week of July Reagan participated in a constraint therapy camp from 9am - 12pm Monday through Thursday at Children's Therapy Center where she regularly has therapy.  She had a great time although I don't have any pictures because we were asked to drop her off and come back to pick her up.  She came home every afternoon full of excitement about the activities she had done that day and was apparently a big helper with the other kids in the camp.


The week after camp we had our weekly physical therapy session with Jill.  She recommended we have Reagan fitted with a custom brace in the next few months.  She also recommended we move forward with the serial casting if the Orthopedic Surgeon supported that decision (we meet with him at UVA at the end of August).  The casting entails a cast on her leg for about 6 weeks that will be removed each week for her ankle to be repositioned to increase the stretch/range of motion.  We are hopeful that we can complete the casting before the snow hits since she won't be able to fit a boot and before it gets too cold since she will have limited clothes that will fit over the cast.  At our appointment last week Jill also dropped the bomb that she has decided to retire after 26 years of treating patients.  Jill has been Reagan's therapist since she was 3 months old.  She has been such an amazing support during this journey.  She supported both Reagan and I on the hard therapy days and pushed me to stand strong when I needed to be hard on Reagan.  It hasn't been easy getting Reagan to do all the activities she's had to do over the last 4 years.  There have been a lot of tears and frustration, but you can tell that Reagan understands why Jill asks her to do the things she does.  We will truly miss seeing Jill every week but are very excited about her next chapter in life.

Reagan, Cole and I were able to take a short trip to Ocean City, Md with my sister Chantelle and my nieces Emily and Allison.  Cole had a blast throwing sand all over himself and both kids loved playing in the water.  We also took the obligatory trip to the board walk and the kids had a lot of fun riding on the roller coaster and the other rides.  We definitely have two thrill seekers!  Although Cole's favorite part of the trip was by far riding the elevator and luggage cart.  Reagan's favorite was definitely the roller coaster.  She even rides with her hands up!

We also had a follow-up from the Botox injections with Dr. Evans, Reagan's Physiatrist.  We ended up seeing the nurse practitioner, Leslie Phillips and she was pleased with Reagan's progress but it is still uncertain whether the injections will help long term.  She recommended we return in 3 months to discuss next steps.  She did say that we can consider additional Botox treatments and serial casting on her leg.  She also recommended we consider getting fitted for a custom brace for her foot.  Needless to say our next appointment will be full of decisions.

We also celebrated Johnny's last birthday in his 30's!  For his birthday we picked up an ATV for daddy and Yamaha TTR-50 for Reagan.  We took both to my parent's property Sunday and they both had a lot of fun playing around with the new toys.  We are able to control the speed on Reagan's dirt bike with a throttle lock and we also bought a remote kill switch that allows us to remotely cut off the engine.  She did really well for her first day out and her squeal with delight was clear evidence that she had a blast!  Cole could be heard on the sidelines scream, "Yay Reagan, she's doing it!"

Today we had a follow-up appointment with Reagan's Neurologist, Dr. Pearl.  Although we expected a rather anti-climactic appointment, it wasn't at all.  First, he dropped the bomb that he wants Reagan to stay on the anti-seizure medication for at least five years.  Johnny and I firmly remember him saying we would wean her off around age 5 so I have been hopeful that we were on the downhill slide toward being without the weight of medication twice a day.  Now it looks like we'll have at least another 4 years of it.  When I mentioned this he said, "our goal is to have an 18 year old who doesn't need medication.  In order to achieve that objective we need to give her brain time to quiet down."  I have been so hopeful that Reagan being on medication was just another speed bump in this thing we call life.  But my disappointed by his comment is overwhelming.  It truly makes me feel like we need to prepare ourselves for Reagan always having epilepsy.

As if that didn't crush me enough, he then mentioned that the results of her last thyroid level gave him some concern.  So although I promised Reagan she wouldn't have to give blood today, she did.  We had a long talk about why this was important and she didn't jerk or cry.  Either she is really tough or she is getting used to needles.  She is such a tough girl!  As if these two bombs weren't enough, Dr. Pearl then shared that he was offered a Chief of Epilepsy position at Boston Children's Hospital.  He said it is like being offered a seat on the Supreme Court. It is with great disappointment that we've now lost yet another person from Team Bischoff.  As you probably remember, in the last year Reagan's neurosurgeon, occupational therapist, physical therapist and now her neurologist have moved to new positions.  Dr. Pearl has seen the Bischoff family in the lowest days of our lives.  He has seen our tears, heard our fears, understood our frustrations, shared our joy as she started developing and shared our disappointment when Reagan started having seizures again last April.  Given the complexity of Reagan's displasia, it is a huge disappointment to lose both experts who were in the operating room during Reagan's brain surgery.  Given we positioned our children with experts in their field, it is not surprising that they have been given amazing opportunities to be recognized in their professions but we don't have to like it.

It is with a heavy heart that we start thinking about heading back to UVA next week.  Luckily we know exactly what to expect and know that we saw amazing progress in March.  Reagan is now able to dress and undress almost completely by herself.  She still has some trouble getting clothes over her shoulder, but she has shown great progress since the constraint camp last week (they practiced dressing).  We are hopeful that she will continue to see progress and such an amazing sense of confidence.  We are excited about our trip to Disney in September and will likely plan for Reagan to start the serial casting soon after we get back.