Long time, no talk.  So, what have you been up to for the last 4 months?

We’ve had our share of excitement (understatement), that’s for sure.

The Claire’s Crusade Race Against Rett Syndrome as part of the 2013 Cleveland Marathon was an amazing success.  And an amazing amount of work.  Recruiting and organizing 150+ runners and walkers, coordinating pick-up and delivery of race packets, etc. was quite the challenge to say the least.  Seeing the army of Crusaders that assembled over that weekend in mid-May, sporting Claire’s Crusade race gear and increasing awareness every step of the way, made everything worth it.

The post-race fundraiser event was incredible as well – and arguably even more work than the race itself.  Nearly 300 people packed Mavis Winkle’s Irish Pub to enjoy the all-you-can buffet, open bar, raffles and auctions, but more importantly, they learned about Rett Syndrome and opened their hearts, wallets and purses for a great cause.  Undoubtedly worth every ounce of effort.

We understand that we can’t do it alone.  We’re blessed to have unwavering support from family and friends – even strangers.  When Claire was diagnosed, we looked at it as an opportunity – an opportunity to leverage this blessing to make a difference, not only for Claire, but for all those like her.  We took it upon ourselves to jump to the front of the line and help these girls who can’t fight for themselves.  As we suspected, friends and family have been and continue to be right there with us.

Between the Race Against Rett Syndrome and the Race Against Rett Syndrome Fundraiser, we came together to raise in excess of $45,000 for Claire’s Crusade.  Simply astounding.  (Click here for a full recap and photo gallery.)  Thank you…for everything.  Sincerely.

As we were preparing for the race and fundraiser, we had the pleasure of going through the IEP process for the first time as well.  (For those who aren’t familiar, IEP is short for “Individualized Education Plan”.)  This is the excruciating process of negotiating with the school district about how they’re going to go about educating your special needs child and what equipment, services and methods they are going to employ in order to do so effectively.  The process started with the school district presenting us with what amounted to a 12-page contract.  After multiple meetings and several conversations in between, the final “contract” ended up being 26 pages.  Colleen’s countless hours of intense preparation and research made for a favorable outcome – one that we’re definitely comfortable with.  We feel like we’ve been able to open solid two-way communication with the school and that the IEP process will lead to a mutually beneficial relationship – both of which will ultimately benefit Claire.  On paper (26 pages worth), things are lined-up to position Claire for a positive school experience this Fall.  It’s up to us now to hold the school district accountable and work with them to ensure that they execute on the plan we’ve agreed to.

After briefly getting a chance to exhale, we were lucky enough to spend roughly 10 days in the hospital.  Good news was that it was a family affair!  Our oldest son, Nolan, was admitted for an emergency appendectomy.  Good thing he was there, because our younger son, Brendan, was then admitted for pneumonia.  Convenient.  Claire, not to be out done by her older brothers, went in for pneumonia as well.  Brendan and Claire were in and out in the same day.  Nolan got to move in.  What else can you do but laugh?  Hey, at least we were efficient!

The story has a happy ending.  Nolan was released the night before his Uncle Mike and Aunt Carli’s wedding.  He was mad that his stay at Hillcrest would cost him the majority of his baseball season, but he was really upset that he was going to disappoint his aunt and uncle and not be able to honor his commitment to be part of their triumvirate of ring bearers for the ceremony.  God works in mysterious ways sometimes…Nolan recovered quicker than expected (aided, no doubt, by his decision to rip his NG tube out of his nose and stomach because “he didn’t need it” any longer) and was able to be there.  As a result, all five of us were able to be there and share in excitement – Colleen and I were in the bridal party, Nolan, Brendan and our Godson, Jack, were ring bearers and Claire was a flower girl with our niece Caitlin.  All is well that ends well.

In between all of this, we began to notice a change in Claire’s behavior – she just hasn’t been herself.  She hasn’t been smiling as much.  Her left hand hasn’t been moving much at all for quite some time now.  Her right hand is now starting to regress and is constantly in her mouth or pulling at her hair or glasses.  This happened before, but we thought she grew out if it.  Not the case.  Not only is she doing it again, but Claire doesn’t seem able to reach out to her communication device to “talk” to us the way she used to.  Her legs are very shaky and her heel cords very tight.  She isn’t taking as many steps and has been falling more.  Her sleep habits have become more of an issue.  If she falls asleep, she is waking up suddenly more often, and more often than not, she is unable to fall back asleep.  Her naps are hit or miss.  Lately, she’s been staring off into the distance – in some sort of daze.  Strange signs of further regression after a period of much progress.  Doctors have suggested botox injections to alleviate tightness in her heel cords and low doses of melatonin to assist with sleep.

Then, just these past few weeks, Claire started showing seizure like behavior.  You see, with Rett Syndrome, seizures are part of the game.  Every parent, though, prays that somehow their little girl defies the odds and gets to live life without seizures.  We were no different.  But like with every other curve ball Rett Syndrome has thrown at us, we will adjust and we will manage.

After the “seizure”, Claire underwent an EEG.  Results were inconclusive; however, we were now on high alert.  On the way to therapy earlier this week, Claire had another seizure-like episode.  This one was the longest (and scariest) to date.  Luckily, we were able to capture it on video.  Getting video is significant.  Not only can her neurologist at Cleveland Clinic Childrens review the footage, so can her specialist at Montefiore in the Bronx.  The beauty of this is that these experts can consult on the best course of action for Claire as we move forward.

The next step is for Claire to undergo 72-hours of EEG monitoring this weekend.  She is scheduled to be admitted at Cleveland Clinic Childrens tomorrow and will likely be required to stay the weekend and into next week to complete testing.  If all goes according to plan, her neurologists will be able to capture and characterize these “events” we suspect to be seizures.  Epilepsy specialists will be involved and the team will hopefully be able to diagnose and name the events so they’re able to guide treatment and management.  If this particular test fails to lead to definitive diagnosis, we’ll pursue Plan B which will investigate potential breathing abnormalities.  Not uncharted territory – very common, actually, in girls with Rett Syndrome.  Although new for us, there is some comfort to know there is precedence for this type of thing.

Truthfully, this summer has been a difficult one so far.  The dark side of Rett Syndrome is starting to show.  Aside from the medical difficulties, Claire is simply getting older.  She’s your everyday three year old little girl, just one starting to realize that she’s trapped inside her own body and that she is “different”.  It’s heartbreaking.  She’s sassy, she’s frustrated, and at times, sad.  She’s also growing.  It’s harder to carry her around – she’s heavier and has out-grown her stroller.  Shopping with her, for example, used to be simple – now she no longer fits in the front of a cart.  Traveling is difficult due to all of the equipment needed to truly include her in all activities.

Despite all of the “excitement”, Colleen was able to escape to Catawba Island with the kids for a much needed get-away.  We were also able to spend some time there as a family over the 4^th of July to celebrate Colleen’s birthday as well.  We’re also really grateful for having some great friends stay a night with us on their way back home from IL to NC. We hope to be able to sneak away for more “summer fun” before the school year starts.

We still hold on to the dreams we have for Claire – independently walk, communicate her needs, etc.  We need to patient…just because a milestone isn’t achieved according to our timeline, or if it was achieved and she’s no longer able to do it, this doesn’t mean our dreams for her won’t come true.  Then again, with Rett, maybe it does.  If that’s the case, we will adjust accordingly.

– SMR