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.

Riding Camp at Red Gate Farm

Reagan went to camp for the first time this week at the age of four.  She and her friend Abby went to the Red Gate Farm Preschool Camp for horseback riding.  Although I was a little apprehensive about how she would deal with the heat and having to wear pants, boots and a helmet, she didn't complain at all.

The camp was structured each day with 30 minutes of equine education, 30 minutes of horseback riding and 30 minutes doing crafts.  Although the camp counselors didn't exactly keep to the schedule very well, Reagan had a great time and is hoping to go to the longer camp next year since she will be a little older.  She is also hoping to start taking lessons so we are researching that too.

The equine education included information about safety around horses and the barn, learning the parts of a horse, bathing a horse and learning about the tack (e.g., bridle, halter, saddle).  Riding included one instructor for the class and one camp counselor for each horse/rider.  There were 14 preschoolers in the class and they were broken into two groups for the riding/craft time.  In this picture, the kids were asked to identify a part of the horse and paint it.  They thought that was so funny!

Reagan was especially lucky to have her cousin Jacqueline as her camp counselor.  Although she did help the other kids and with other activities around the stable, it was so nice having there to teach Reagan all about horses.  She is such a great role model for Reagan!

For the crafting time the camp counselors had a lot of fun with different activities each day.  One day they painted horses with water colors and talked about the different parts of a horse (e.g., tail, legs, mane, fetlock).  One day they were told to go search the playground for horse shoes (painted pink none-the-less!) and were given stickers to write their names on the horse shoes.  They were also given construction paper and glue and could pick a picture of one of the horses from the barn and decorate the page with stickers.  One day they were given horse and boot tattoos and the last day they colored pillow cases that had horses traced on them.

The riding instruction was tailored to preschoolers, but I was impressed with the depth of information they covered.  They were taught to hold the reins, sitting position and jumping position, navigating over cavaletties (poles on the ground) and through an obstacle course, walking independently (steering on their own) and trotting. Reagan did a great job and was able to achieve three of our big goals - she got a great stretch in her ankle as she put her heal down in the stirrups and she held the reins with lefty which required her to turn her thumbs up.  Great supination!  Oh, AND she had fun!!  Although this picture is a little blurry, Reagan was trotting - the smile says it all and the giggle was priceless!

The horse Reagan was assigned for the week was Caroline, a very sweet mare who took very good care of Reagan.  Although a little on the sluggish side, she was a perfect partner to break Reagan into horseback riding. As you can see from the picture, Caroline lost her eye.  She had an unfortunate infection that started to go to her brain so it had to be removed.  Reagan was very proud to explain to the other kids that her horse got an infection and had to "take her eye out".  As a person who believes everything happens for a reason, I like to think that Reagan and Caroline understood each other.  Reagan is very compassionate when she tells the story about Caroline's eye...seeing that side of her makes me so proud to be her mama.

Back to Children's National we go...

Just two quick updates from the last two days.  Monday we had Cole's monthly appointment with Heather from Early Intervention.  I have become a little worried about his posture recently and wanted to discuss it with her.  Cole has tilted his hips and pushed out his belly since he started walking, but we have always chalked that up to low tone with the hope that it would become less pronounced as he became a more stable walker.  I mentioned my concern to Heather and she agreed that it was more exaggerated than it should be at this point and recommended a PT consult.  She is going to request an Early Intervention PT visit him next month and we will also see Reagan's PT on Tuesday to get her opinion.  Heather said his hips are moving as one instead of separately causing him to stick out his belly and therefore throw his shoulders back to rebalance.  The good news is that she doesn't think it's a skeletal problem but rather a muscular one.  I will post an update next week.

We also had Reagan's first Botox injections at Children's National Medical Center Tuesday.  We had an 8am appointment that required a 6am arrival so we were on the road by 5am.  On a positive note that means traffic is lighter so we were happy!  Given there were 15 deep tissue injections, she was anesthetized for the procedure.  She got a really cool folder this time that had coloring pages and activities to do while she waited.  Most helpful, however, were the pictures of all the equipment she was going to see and it gave us an opportunity to prepare her before we went back into the operating room.  Although she sees some of the equipment at her other appointments, she doesn't see the oxygen mask very often and the bubblegum smell didn't make it any less traumatic.  She was definitely anxious, but overall did very well.

Botox injections are commonly used for kids with Cerebral Palsy.  Botulinum Toxin type A, or Botox, is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles.  Reagan has spasticity in her left arm and leg because the nerves aren't communicating effectively with the muscles.  The Botox will block the transmission between the nerves and the affected muscles, therefore relaxing the muscle and reducing stiffness to allow better stretches and increased range of motion.

She is at an age now that she asks a LOT of questions.  To give you an idea, she has asked me three times this week why we live on Earth.  Apparently not satisfied with the answer that other planets are hot and don't have water.  She reminded me that we could just bring water with us.  So when she asked why she had to go to the hospital it was hard to know how much to explain.  We try not to talk about her weaknesses but rather focus on the things she does really well.  She was persistent asking why we went to the hospital and being told that it will help her wasn't enough.  So I asked her to put out her hands.  As you can see in this picture, she is getting much better at opening the fingers on her left hand but she still can't get her fingers straight or isolate any of them (e.g., to point).  I then asked her to turn her hands over with her palms up and as you can see in this picture she had to use her right hand to get her left hand turned over.  Even then, with the restricted range of motion, she isn't able to rotate her wrist or extend her fingers.  I tried to explain that we know it is hard for her so we went to the hospital to make it easier.  She looked up with the saddest little eyes as if she had disappointed us.  It truly broke my heart.  I reminded her it was ok for things to be hard, but it was one of those moments as a mom that you wished you could take away all your child's pain.  We will focus the next few months stretching and doing activities to optimize the effects of the Botox injections and will return to see the Physiatrist July 24th as a follow-up to the procedures.  Although she said we may see some improvement in a few days, it may take up to two weeks for the new nerves to generate and start to show whether the injections will be effective or not.  We are so blessed that she wants to please us, that she cares enough to try, stubborn enough to keep trying even though it's hard, and smart enough to understand why we need to work so hard.