New brace coming soon!

Wow, I haven't posted in over two months!  You'd think I've been on vacation or something.  Well my contracts with Boeing have been very busy and they have kept me traveling.  But life doesn't stop!  Since my last post Reagan has visited the physiologist, Orthotic Solutions, the pediatrician and back to Nascott to check her DMO glove and get fitted for a new brace.

The visit to the physiologist went very well and I actually heard the words, "she may not have to wear the brace long term".  I just about fell out of my chair!  That was the first glimmer of hope in this area and I could have FLOWN home I was so excited.  But one thing I've learned is that you should NEVER count your chickens before they are hatched.  With that said, Dr. Morozova recommended switching from the Cascade 3.5 DAFO (Dynamic Ankle Foot Orthosis) to an SMO (Supra-Malleolar Orthosis).  Unfortunately the orthotist and PT don't agree with the SMO direction and I'm stuck in the middle.  The good news is that we have a team of people who are giving us options.  We met with the orthotist and he cast Reagan for a new brace and will be calling Dr. Morozova to make a final decision on what brace to order.  It should arrive in about 6-8 weeks.  Reagan decided to switch from green with horses to purple with jaguars.  Can't wait to see it!

In addition to therapy and doctor's appointments, we took a trip to the Rehoboth beach with her friend Abby and the Coullahan family.  It was a great trip and a lot of fun.  We played on the beach, took a boat trip to visit Assateague Island, went to a waterpark and Reagan tried cracking crabs for the first time and really liked them!

In addition to some beach time, Reagan went to a Disney Frozen ballet camp with her friend Emma, went to the Leesburg 4th of July Parade and we've made some time to get the ATVs and dirt bike out!

DMO Glove is in…Reagan Takes 1st Place!

As you may remember, Reagan was fitted for a Dynamic Movement Orthosis back in March.  The glove finally arrived and we picked it up this week.  I convinced Reagan that it was JUST like Cinderella's glove.  When questioned about why her glove had no fingers I explained that this is the "new model" that wasn't available when Cinderella ordered hers.  Although very excited to pick up her princess glove, the novelty has quickly worn off.  However, she is being very patient and we are working through the adjustment.  We were asked to increase the time she wears the glove by one hour each day until she reaches 6-7 hours per day.  We look forward to meeting with the physiatrist this week to see what she thinks!

As a quick reminder, each orthosis is custom made to have a snug fit to increase pressure on certain muscle groups and improve proprioception.  The hope is that this leads to better awareness of the affected arm and hand.  The resistance created by additional layers of reinforcing material adds a biomechanical influence to improve control of movement.  The glove should provide improved functions to include better posture, improved proximal / distal stability and reduced involuntary movements.  Over time, the desired effect would be to experience the improvement in function and control of movement when not wearing the glove.  At $1,170 ($250 out of pocket after insurance paid their part) we are hopeful the glove has as many amazing results as research has suggested!

Last week was a busy one with 5 appointments between the two kids.  Reagan caught strep which took us to the pediatrician, in addition to getting the glove and therapy.  We have an equally busy week this week with four appointments.  But the weekend was nothing but fun!  Reagan rode in her first horse show.  It was a "schooling" show so it didn't require the traditional suit coat.  She had a lot of fun and rode in three classes.  She chose to ride Tuppence and rode in a walk/halt, walk/trot and a pattern class.  She placed 2nd, 1st and 4th  and was very excited when her Daddy hung her ribbons in her bedroom.

EEG Results are in...

I will start with the good news…

Cole saw the ophthalmologist this week and although it was a disaster of an appointment, Dr. Jeffries said Cole's eyes have remained stable since our last dilation so his prescription does not need to change.  Unfortunately he refused to do the vision test and it was heart breaking watching him try to identify the shapes and continue to call them the wrong names even when we moved him halfway to the screen.  All things considered, however, we are very happy to hear that his eyes are staying the same.  We will go back in 6 months for another check-up.

Regarding the EEG, I finally got a call back from Dr. Lavenstein today and unfortunately he said there is still quite a bit of abnormal activity on the EEG.  Although I wasn't surprised, it was still extremely discouraging since we were hoping it would be "clean".  It has been two years since she had a seizure and I was really hoping the "quiet time" would stop the rioting and we'd be able to start weaning her off her medication.  The neuro said we should continue at the current level of her Trileptol and increase it to 1 tsp when she reaches 40 pounds (in the next few months).  We will go back in 6 months for a check-up and do another EEG next year to see if she has made any progress.

I remember growing up there was a boy on our street who had seizures.  I remember thinking they weren't really a big deal.  You have one, it stops, and you go on with what you were doing.  Boy was I wrong…or perhaps just wrong from a parent's perspective.  We've been told they don't hurt or cause development issues, so why are we so bothered by them?  Why?  I will share a few of the things that occupy my thoughts.  I worry she's going to be on playground equipment and have a seizure and fall.  I worry she's going to be on a school trip and they will forget to give her medicine or it's going to get too hot and not work (extreme temperatures change the compound).   I worry she's going to be in 7th grade history class, have a seizure, pee in her pants and all the kids will laugh.  I worry that she will only be able to live where public transportation can take her to get groceries and go to work because she won't be able to drive a car.  I worry that she will want to have children but not be able to take her medication while she is pregnant.  It's not really the seizures, but rather how it impacts her life.

So many times we've been told to be thankful.  We've been told that "things could be so much worse."  We were told to be thankful that her displasia was operable or her prognosis would have been bleak.  We were told that her hand could have been just a "helper hand" but look at how well it's functioning now.

Knowing this and reading so many blogs where parents struggle just to find a medicine regimen that controls the seizures I feel selfish wanting her to be seizure free.  I feel guilty for being angry.  I feel guilty for wanting her to play like her friends and not have to answer questions about why she wears a brace.  I feel guilty that I want her to not have to worry about so many grown up issues at such a young age.  I hate that I can't FIX this for her.  And yes, I know this experience will make her stronger…but all things being considered I would still trade it all in.  I know over time we will move on and accept where we are but I'm just tired of the roller coaster.

And with that, life continues…Monday we go back to the orthotist because Reagan got a HORRIBLE blister on her big toe from her brace after two hours of soccer at the playground Thursday.  We have her 5 year appointment and go back to see the physiologist in May and then a little over a month off before we head back to UVA at the end of July.  If we're lucky I'll have some fun pictures from summer trips to share.  As always, thank you for your ongoing prayers, for caring enough to read my blog, for keeping up with our adventures and for all your support!

Didn't see THAT coming…EEG here we come.

Although I just recently posted an update, we've had a hectic few weeks.  We were lucky enough to have the construction on the upper two levels of the house completed and our belongings brought back from storage.  Everything from the garage and basement had to remain in storage until those two rooms can be finished.  We're hoping that will start next week!

Reagan had her first appointment with Dr. Lavenstein last week and it went very well and he is very pleased with her progress.  I shared the discussion we had with Dr. Pearl about the medication plan to gain his perspective and was surprised by his response.  As a reminder, originally Dr. Pearl recommended trying to bring Reagan off her meds when she turned five.  The at our last appointment he was adamantly that we should wait until she's eight.  Dr. Lavenstein recommended an EEG to verify how her brain activity looks and make a decision from there.  They were able to get us into an appointment today and it was nice not having a lot of time to think about it.  Although it is a very straight forward test that is done in the neurology office, it still brings back a lot of memories and emotions for us.

We were asked to prevent Reagan from sleeping more than 4 hours last night and ensure she doesn't sleep on the way to the appointment.  Given the appointment was at 4:30pm that was rather challenging, but we accomplished it.  They connected about 20 electrodes to her head and chest and as soon as the lights went out so was she!  The goal is to see as much natural brain activity as possible and not be distracted by activity caused by movement (including eye movement).  They let her sleep for about 20 minutes collecting both the EEG data and the video component.  After about 20 minutes they asked us to wake her up and have her keep her eyes open…but kept the lights off and we weren't allowed to shake her or tickle her since movement can affect the data being collected.  Who knew THAT would be so hard!  Once we had about 10 minutes of her awake, they started a series of light strobes that flashed about 10 times and then it went dark for a few seconds and then another series of strobes done more quickly.

Overall Reagan did a great job and took it all in stride.  We even had her smiling by the end!  We talked to her about what to expect last night and showed her pictures from her last EEG in April 2012.  It was two years ago this month that she started having her seizures again after being seizure free for over 20 months.  She was exhausted when we left and after giving her a bath to get the yucky glue residue out of her hair she was very excited about being able to go to bed.  The EEG tech and neurologist will review the results and call us in the next 5-7 days.  We're praying the results look good and she is able to start weaning off the medication.  And if not, we'll carry on with the current plan and increase her medication (to keep up with weight gain) in the next few months.

Next week we have an opthalmology appointment for Cole and then physiology and the pediatrician for Reagan in May.

After only four hours of sleep last night with a wake up call by Cole in the middle for water, it's time for me to go to bed!  I'm definitely ready for some rest myself.