EEG Results ~ Feeling disheartened...

Thursday night Reagan was very excited to prepare for her sleep deprived EEG on Friday.  She remembered from the previous year being able to stay up late and watch movies.  So Johnny took the late shift and kept her up until 1am and I set my alarm and got her up at 5am.  We took Cole with us this year for the first time and it was his job to keep her awake for the 45 minute drive to the hospital. Although she almost fell asleep twice, Cole had a little too much fun hitting her and screaming to keep her awake.  He had a lot of questions about what an EEG is and how it works.  He was also very concerned about his sister and watched over her carefully.

Reagan did very well during the test.  It doesn't go without appreciation that when she was younger this wasn't as easy. The tech was very nice and did a great job explaining what she should expect each step of the way.  After about 15 minutes of getting setup and responding to some questions and breathing the tech turned out the lights and started a series of strobe lights.  They started slow and further between and increased with speed and frequency.  She was measuring brain activity both during wake and once Reagan fell asleep.  We were so proud of Cole being able to sit quietly for 40 minutes during the test.  This was important not only because she had a video monitor, but also because she needed to stay asleep. A year ago I'm not sure he would have been able to sit still that long.

We had our follow up today with the neurologist, Dr. Lavenstein.  We've been thinking about this appointment since our last EEG in April of 2016 and hanging our hat on something Dr. Pearl told us when Reagan was only 1 year old.  He said the around the age of 8 the brain could settle down as the majority of the mapping has developed.  Amazing how we've always kept age 8 in the back of our mind as a first goal (she turns 8 next month).  As you may remember, Dr. Lavenstein also suggested we repeat the EEG this year to determine if Reagan may be able to come off her medication.  Although he was very happy to hear she is still responding well to the Trileptol, he said that the EEG shows no improvement since last year and that she continues to have frequent focal discharges in the right frontal lobe in the area where her surgery was.  This indicates that without medication, her probability of having seizures from activity responding to the area of scar tissue is probably 50-60%.  We were hopeful going into this appointment that being seizure free for 5 years would be a huge factor in trying to go off her medication.  Unfortunately, Dr. Lavenstein said he just doesn't think it's a good idea.  I'm sure he could see the disappointment in our faces as we digested this information.  His compassion was apparent as he reminded us that we should be so thankful that the medication has allowed her to live seizure free for 5 years.  I mentioned our concern about learning challenges from the affects of the medication and he said research supports that seizure medications can do that.  But he also said that having seizures has so many negative affects on the brain's ability to learn and retain information that the risk would be counterproductive.  Reagan asked if she could start taking her medication as a pill.  Although she hasn't taken pills before, she said she is ready to try.  And selfishly it would be MUCH easier to keep pills in our bag if we are away from home not to mention they don't have to be climate controlled like her liquid medication.  AND we won't have to keep hundreds of syringes in the bottom drawer in the kitchen!

And so we left feeling as though the hope was lost.  We were told to come back in 6 months for another checkup and that maybe one day we would see improvement in her brain activity that may allow her to come off medication. But not today.  I have thought a lot about why we want this so badly.  I have come to the conclusion that especially now without therapy, and her doing so well in her activities, that the medication is one of the only things that prevents us from feeling like we could put this in the past.  Twice a day we are reminded that one day she may have a seizure again.  We are so happy with how well she is doing, but I guess there are days I just want to stress about normal mom stuff.  Like picking summer camps and Easter outfits.  But alas, this is not our destiny and so we carry on.  I tuck my children in bed each night, like all moms, kissing them good night, telling them how much I love them, how proud I am of them, and hoping they know how amazing I think they are for taking life head on and never giving up on things that are so very hard.

Ophthalmologist, Contacts, Lacrosse and Therapy is a WRAP?!

Well I have a few updates I should share.  First is that we had our bi-annual appointment with the Ophthalmologist, Dr. Jeffrey.  She was pleased with how Cole is doing and chose not to dilate his eyes since we had just done that in the Fall when we went to Ohio.  He didn't show any improvement in his vision exam, but she did say that the brain is still developing and we could see some minor improvements still in the next year or two.  She also isn't convinced that the contacts are going to help dampen the nystagmus, but said that it doesn't hurt to try if Cole allows us to put them in.  Unlike the optho in OH and our low vision specialist, she was willing to hold him down to get them in...and we did.  Unfortunately we only got one contact in and he was too upset to put in the other one.  But the good news is that he knew what it was like and knows they don't hurt.  This was huge progress!  She did say, however, that it is fine if we put the contacts in at home.  The other dr.'s told us it should be done in the office so they can check them.  No other big news from that appointment so we will go back in six months.

So I talked to Cole when we got home and let him pick what day he wanted to try the contacts again. He picked a day, and that morning I laid him on the bed and popped them right in his eyes.  Not to say it was EASY per se (I've never done it before) but he didn't have any problem and not a single tear!  He has worn them twice since but still isn't a big fan of them. Given there are mixed opinions on whether they will help, we're taking it slow while he gets used to the idea.  He did share Tuesday night that he didn't want to wear them because he didn't want the kids at school to know that he has to have a vision teacher.  We talked about how the kids know he has trouble seeing and that it's ok.  I went to bed worried about him but he woke up Wednesday and asked to wear them, so in they went! I would love to say that our conversation fixed the concerns, but he didn't want to wear them today so we still have some work to do.  He was pretty excited to be able to wear Spiderman sunglasses though!

In other news, Reagan decided she wanted to try lacrosse for a second season and join the Algonkian Tribe Girls 1/2 team. They have so many girls they are splitting them into two teams that will play back to back but all practices will be together.  She is SUPER excited that her dad is one of the assistant coaches!  It is so fun seeing her play and so helpful having dad help learn the skills.  Given there are so many girls new to lacrosse this year it's also fun seeing Reagan helping the others.  Unfortunately their first game was rained out Saturday but she will be playing a double header Saturday to help out the other team since so many girls are away on Spring Break.

And more big news about Reagan!  Her therapist from INOVA Rehab, Julie, is moving back to CA.  The care plan Julie wrote was coming up for re-evaluation and Reagan met all three of her short term goals and 2 of her 4 long term goals!  She has learned to tie shoes with two hands, she is able to successfully use a zipper, she can maintain yoga/plank poses for 15 seconds and propel a scooter board using bilateral movements for up to 200 feet.  And the most exciting one for Reagan is that she increased her grip strength from #5 to #10 using a dynamometer! This is huge - it shows how much stronger her hand grip has gotten.  She has gone from only being able to hang from monkey bars with two hands for about 2-3 seconds to be able to hold it over 12 seconds!!  The goal she has not mastered is putting her hair in a pony tail and using fasteners to dress her herself (buttons, snaps, zippers).  Both of these goals were focused on pronation and fine motor coordination which are still really hard for her.  Based on her progress and the activities she does (piano, TKD, lacrosse, swim team), Julie recommended we take some time off from occupational therapy.  Wow, never thought I would hear those words!  In all honesty, though, it has been a little hard to accept.  You'd think I would be happy, right?  Therapy 1-2 times per week for almost 8 years has been a huge commitment for us.  We decided we will come off the regular schedule, but she developed a new plan of care and will take cancellation appoints as they come up throughout the year.  I'm hoping that gives her some freedom to just be a kid but also some touch points where a professional can gauge if she is falling behind.

This decision comes with it a lot of mixed emotions thought.  I'm excited Julie thinks Reagan can maintain her progress without professional supervision, but I can't stop myself from feeling like we're giving up on her making more progress.  I can't stop myself from feeling like this may be all the improvement she may have in her hand.  She broke down a few weeks ago and said, "mom, what if my hand is like this forever."  It absolutely tore at my heart to realize she think she may regain full use and functionality.  And yet, who knows right?  With enough hard work and focus maybe it could...so is stopping the right choice?  I can't imagine not being able to put my hair in a pony tail, fasten a bra, or have to wear clothes without buttons.  I pray that one day medical advances will help us retrain the brain to work these muscles.  Until then, I hug her, I love her, I remind her how amazing she is...despite the fact that she can't juggle three scarves like the other kids in her PE class.  It's ok, it doesn't define her.  But when I tell her it's ok if she can't juggle scarves she says, "it's not ok with me."  It is exactly that spirit that has gotten her to where she is today.  I hope one day she knows how amazing I truly think she is.  Every step of the way she has worked hard and never given up.

And with that, we go into Spring Break week with our EEG prep tonight for tomorrow's test.  Reagan is SO excited about her EEG because it means she gets to stay up ALL NIGHT.  Luckily mom and dad tag team - he has has the late shift and I have the early shift.  So much easier going into the testing with a little girl who is excited.  If only I could be excited about staying up late and not being worried about what the results will mean.... so many days I wish I could be a kid again!