So Close, But So Far Away

Tonight as I tucked Claire into bed, I noticed she had something important on her mind that she wanted to share.  Her Tobii communication device was downstairs charging for the next day, so at this moment, it was just us two, no communication devices, no technology.  Just us.  Claire was staring at her three favorite stuffed animals.  She wasn’t lying down, but rather upright, looking at them, and making “mmm” sounds.  I knew from that moment we needed to chat!

So I got into bed with them all, and said “What’s going on with your friends?”  She looks at me, and smiles.  (This is her telling me she feels understood)  So I get comfy.  I tell her, “Okay!  You need to tell me what you guys are talking about… fill me in!”   Again, she looks at me and smiles.

There are many moments like these where she looks right in my eyes, for a long moment.  Sometimes for a few seconds, sometimes up to a minute.  This is when I make sure to be quiet and listen.   I smile back.  In between the looks, I tell her “Claire, you really have a lot to say right now.”  She smiles back.  Again, feeling understood.  And I continue:  “I know, Claire.  I totally agree with what you are saying.  Tell me more.  Yes!  I know.”  And she smiles yet again, looking me deeper in the eyes.

At that moment, I felt so incredible close to her.  We were inches apart, and we were connecting.  And it was the best moment ever.  And yet, here we were, only inches apart, and as I looked into her eyes, deep down, I felt so far away.  What I’d give to truly know what she was thinking during this moment when she was staring me in the eyes with that look on her face, which said “Mom… do you know what I mean?  I want to tell you so much.  Please tell me you understand.”

Awee, Rett.  How much I dislike you.  Seriously, why?!   I just want to hear my baby’s voice.  Please, one day??  But recently, her health?    Come on.   I knew from the beginning how all  x, y, and z were possible with Rett.  But now, darn it… they are coming true.  No!  I’m not ready yet.   Prayers are welcome in these upcoming next two weeks.  My stress level is honestly through the roof at the moment.  As I mentioned in my previous post, Claire’s health has been poor this winter.  Now, we are facing the possibility that she’s aspirating on food and liquids, which means instead of her food and liquids going to her stomach, they are going to her lungs, causing her to choke/ cough and consistently vomit among other issues.  On Tuesday, she will have her 4th swallow study done.   We are also suspecting GERD among other GI issues, and she’ll be seen next week for that.  I don’t even want to get into what this could mean if she truly is aspirating because honestly I’m not there yet to think along the lines of her being fed through a tube. But, I’m not going to lie… when the pediatrician called me on Friday and asked me if I truly understood everything that was going on and what this could mean (which I do understand), it became more real.  It’s just weird hearing it from someone else.  No!

We will do whatever we need to do for Claire, for her safety and health. Prayers please though, for a good outcome with these upcoming doctors appointments.  She also needs to see pulmonary for possible reactive airway disorder.  And should we get back to the sleep specialist for possible sleep apnea, or obstruction of the airway when sleeping?  (am I even saying these medical things correctly?)  Yes… all of these things are now on the radar.  Not uncommon with Rett.  But new to us to some degree.

The focus of the next two weeks are not only on Claire’s current medical issues, but it’s also on Claire’s school program.    We have a couple meetings with the person in charge of the school program, along with the entire team of teachers and therapists at school this week and next.  I haven’t said much on the topic of her school year thus far, nor will I, in this format.  However, now that we almost have a year under our belt with the program, I understand a lot more than I did in the beginning and I’m comfortable in determining if this is the right fit.  There are current challenges and gaps that need to be figured out and closed at the moment.  I’m hoping we can come up with a great solution in the next couple of weeks together, so that next year will be smoother on both ends.

Finally, on Thursday this week, we have a meeting with our case manager to discuss Claire’s updated health and progress (or lack thereof), among other topics.  This meeting should be fine… there’s just a lot of prep work this time around in particular.

All of this “Claire health/school/case manager stuff” is in addition to regularly attending her therapies, trying to bring them in the home for consistency sake, keeping up with the kids’ school stuff, the boys’ homework, their sports practices and games, the kids’ playdates, and our normal  ‘life’  with family and friends.  We are constantly on the go, go and go…  and things need to slow down, down and down.  But right now, it can’t.  So yes…

Prayers for a good health report, successful outcome on the school front, smooth meetings with the case manager/ insurances, and peace among the homefront so my kids don’t sense the stress level or miss a homework assignment because my mind is so far away at the moment, would be much appreciated.  🙂

On a side note? (and yes, totally random point)  My boys love when I volunteer at their school as a library or computer helper.  They are so darn cute when I’m there and they are so happy to tell their friends “that’s my mom!”  I know this won’t last forever.  So on Tuesday, before Claire’s swallow study, I’ll be Brendan’s “computer mom helper” and he already told me how happy he was about this.  Hearing this is priceless.  Being there is even better!

You know…  so close but so far away?  Some moments you may feel like you have a good handle on things… you are in control and things are manageable.  Other times, you may feel the total opposite.  And… in a blink of an eye, these moments can be interchangeable.  That’s just the way it goes.

So, although I’m still searching on how to process and “do”, especially during these busier times, I’ve also just learned to go with it and ride the ride.  (And send extra thanks to those people who are patient with me when my getting back to you response time may be a little longer than what it used to be… or if I just completely forget… so sorry!)  😦

God has a plan for all of us, this I mentioned before.  But does that mean we can’t ask for extra prayers at the times where stress may be a bit heavier and we are hoping for good test results or IEP answers, among just keeping the “norm” on the home front?   I don’t think so.   🙂

Let It Snow

2014 has started off with some really cold temperatures around here, that’s for sure!  The kids have most definitely been enjoying their snow days.   Those snow days have also been great because we’ve had quite the sick little girl over here.  It seems like every other week since December, she’s been sick with one thing or another.  Whether a GI bug, a weird virus, upper respiratory issues, back to another form of the GI bug, etc., she’s needed a lot of down time to rest in hopes to recover.  This past week, Claire’s gone through a lot.   I’m happy to say that slowly but surely, she’s getting better.

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Sick at home. Bucket, sheets and towels galore. Claire’s being a trooper!

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Last weekend at the hospital. Again, she’s quite the trooper!

It’s important to give Claire as much downtime as possible when she’s sick.  It’s also important though, to make sure we continue to work on the things she would be working on whether at school or in therapy.  The continuous days at home can all blur together at times, so it’s helpful (for me) to have a plan and a few goals to work towards each day.  What activities can she do while wearing her AFOs and being in her stander?  What activities can we do so that she can practice “driving” her wheelchair?  How can we practice the vocabulary she’s working on in school, at home?  What activities can we do at home that can help her practice the preposition words and other concepts that she’s working on during her private speech therapy sessions?  How can we get her motivated to practice walking?  What flashcards can she go over while sitting during a meal?  My mind is always going, wondering how we can use the moments of each day to reinforce what she’s doing while at school or in therapy.  (Sometimes I wish my mind would turn off!)  If she’s stuck at home due to sickness, I don’t want her falling behind elsewhere.

Some of the things Claire’s been working on the past couple of weeks, include practicing her winter clothing school vocabulary and action words.  I didn’t know how to work on these words, but then after copying some ideas from a preschool lesson plan book, it started coming together.  The one morning, Claire worked on dressing her favorite stuffed animal because it was cold.  Claire would say which article of clothing her bear needed to find and wear, using her Tobii communication device.  The articles of clothing were scattered around the 1st floor of the house.  If she picked “mitten”, Claire would have to practice walking to wherever the mitten was located on the 1st floor.  She would continue to gather the clothing items and when she was done, she would “dress” her bear to get it warm.  Then, after doing so, she picked what the bear would do.  (Incorporating her action words). Should the bear sleep?  Throw snowballs?  Or possibly go sled riding?  If she chose (using her Tobii) that she wanted her bear to sleep, she would use the Tobii to read the bear a bedtime story.  If she wanted the bear to go sled riding, Claire would go in the basement to go “sled riding” aka: work on her physical therapy goals by going up the stairs of a slide we have in the basement.  She would take the bear sled riding down that slide. Etc.  Etc.

A less important goal but still one to work one on includes having Claire practice driving her wheelchair.  To make this more fun for her, we lined up blocks and wanted Claire to knock them over by selecting the forward button on her tray. The boys thought this was so funny, and so did Claire.

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Driving her wheelchair into the tower to knock the blocks down.

Yesterday, I wanted Claire to work on pretend play, while incorporating her Tobii vocabulary words and direct access (an occupational therapy goal).  So…. she picked which doll she wanted to take care of.  She chose the activity she wanted to help the doll with (feeding, bathing, getting ready for bed, etc) using her Tobii, and I would try to incorporate hand over hand play so she felt she was actually, for example, giving the doll a bath.  Then, in conclusion, she would use the Tobii to read that doll a bedtime story.   Below are some pictures.  She seemed to enjoy herself.

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After giving her doll a bath, Claire was reading her a bedtime story using her Tobii communication device.

I give credit to those teachers and therapists who have to come up with ideas on how to work on goals through play, every single day!  I know I run into ruts in coming up with ideas as to how to keep challenging Claire to bring her a step further each day at home.  It gives me an appreciation to those educators who have the ability to come up with ideas, especially on the fly!  Kuddos to you!

Sweet smiles!

Reflections

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Happy New Year!  I hope everyone’s holidays were wonderful and I hope 2014 is off to a good start for you.

So in my New Years post last year, I had 2 resolutions. 1) to write more in Claire’s blog.   Hmmm.   This really didn’t happen.    And 2) to physically get healthier.  My results were not like my husband’s, (who lost 40 pounds and is now migraine free…go Sean!)  but they were okay:  my nutrition is on track,  I ran my first 10K for Claire in May, in addition to a few other 5Ks, and joined a gym when Claire started school (but it ended up closing after a couple months of me joining).

Are my 2013 resolutions going to be carried into the 2014 year?   To get physically healthier, yes.  Finding a new gym near Claire’s school is back on my radar.  Getting stronger is no longer a “nice to have” but is now in the “mandatory” category.  Claire has grown a lot this past year and it’s absolutely wonderful that she’s thriving in this area!   She is a few months away from turning 4 and is about 40 pounds, wearing a size 5T.  She is getting very heavy to pick up and carry around.  Because she is still non ambulatory, it is starting to get real hard, physically, to move her from point A to point B, whether inside or outside the home.  More weight training exercises for me is a must.

Now for the other one… to write more in this blog.  Ah yes, that one.  I give so much credit to others who are able to put their experiences with Rett into words and share these with others.  It is so good.  It helps spread Rett awareness.   It helps those outside the Rett community understand and learn more.  And finally, it helps other Rett families who are in the same boat, feel more understood and less alone.  I experienced this a few weeks ago when I came across the writings of Marta.  Marta is the mom of beautiful Caroline, who is a just a few months older than Claire.  And she truly has a gift with words.  Reading her posts has been therapeutic for me.  When I came across this post in particular (thank you, Marta, for allowing me to share!) I was in awe.

Click here.

The thoughts Marta shared were exactly, dead on, what went through my head the first time I went gift shopping for Claire.   Claire was diagnosed with Rett a couple months after her 1st birthday.  So, the experience I had when I went shopping for her 2nd birthday most definitely caught me off guard.  I wasn’t expecting one simple trip to the store to bring on such intense feelings – the ones Marta described in her post.  I thought I was crazy.  Fast forward a year 1/2 later (to now)…I’m shopping for Claire’s Christmas presents, and here we go again.  The same thoughts come back, only they are even more defined at this point, and the sorrow among other feelings, is so much deeper now than ever before.  But thanks to Marta, I no longer feel in like I’m crazy, particularly on this subject.  I feel more understood and less alone.

As much as I want to be able to share my experiences with you in this blog, the truth is, it’s getting more difficult to do so.  As time goes by, living with Rett on a daily basis is just getting harder and harder.  (I thought the opposite was supposed to happen?!!!)  I cannot, for the life of me, seem to escape the deep sadness that I feel every single day, multiple times a day, when I see Claire struggle with her physical, social and emotional challenges. The ache in my heart is constantly there.  The sadness gets deeper as the months pass.  Is this normal?  Who knows what “normal” is anymore.  The fact of the matter is that it’s there.  And at the end of the day, when the kids are all asleep upstairs and the house is quiet, I need to shut my thoughts and feelings down for the day.  I don’t want to prolong my thoughts and feelings by writing about them… I don’t want to talk about them, even to Sean.  I just want to relax my mind, and escape reality by watching TV with Sean and Murphy (our dog).  I may provide quick updates about the day on Facebook. A few words, maybe post a picture or two because it takes less than a minute to do so, and then I’m done.  Good or bad, I need to shut things down because it gives me strength for the next day.

Living with Rett is getting harder vs. easier, I think, because Claire is getting older and understands so much more than what she obviously understood when she was 1st diagnosed.  Her feelings and level of cognition are just like any other soon to be 4 year old.  So, when others are greeted with a hello, and she is not, she knows.  She hears when people make remarks like “wow, she really IS, so smart!”   She also knows when people are questioning her cognition and don’t believe that she really knows what she knows.  She wants to feel understood but is at the mercy of others to do so and is frustrated when people speak for her and think they know what she wants or feels, without giving her a fair chance of saying so through her communication device or via another way.   She is frustrated when people don’t give her any way to communicate in general.  When I see how all of these types of things make her feel, and how frequently all of the above occurs, it absolutely breaks my heart.

The list continues on…  Claire wants to feel inclusion, just like anyone else,  and she knows when there is a clear division between her and others for whatever the reason may be.  Claire also understands her lack of independence compared to her peers.  She knows others her age aren’t in diapers anymore.  What am I supposed to do now if we are in public and she needs to be changed?  She no longer fits on the changing table, and I would hate to put her on any public floor, even obviously on top of a mat or blanket.   I want to give her the privacy and dignity that she deserves, and I’m not sure how to do this since since she is so much bigger than a baby who if when in public needs to be changed can be, no problem.  If she needs to be changed, I don’t want her to feel embarrassed in any way and I need to figure out a way to discreetly do this.   She knows others do not need someone to feed them or give them something to drink. She sees her peers coloring pictures with crayons and how they are starting to write their names, or how they are able to hold a book and turn the pages by themselves.

She knows that her peers are way beyond drinking from bottles.  (We no longer use the word ‘bottle’ in our house.  She will have her “morning cafe”  aka: protein smoothie via a bottle (in the privacy of her home) with Mom, as Mom is drinking her coffee… and her “night cap” aka: warm almond milk (in the privacy of her home) right before bed.  (with Mom?  ha.  No… Mom will have her night cap after the kids are sleeping)  🙂     Claire knows she can’t walk and go up and down the stairs, get on/off couches, or move around at all by herself.  During play times, she sees how with my boys, or when other kids are over, she cannot keep up with them.  They run from the outside, inside…  from the backyard to the front yard… from the toy room upstairs to the basement downstairs…  then back up again.  That’s what kids do, as they should!  They are asking each other, “what do you want to play next?”  And they go and do it.  Claire isn’t included in the conversation and decision making, and is often left alone until someone moves her to whatever the next activity is.  After a while of doing this, she’ll resort to her 12-24 month old musical toys that she’s been playing with since she was 9 months old, because pressing those buttons is something she can do by herself.   I’ve observed a similar type situation that Claire had during school one day.  I saw the sadness on her face that came from a moment where she was playing an activity with her friends on the carpet, and they quickly decided a new activity at the opposite end of the classroom seemed more fun… so they quickly got up and moved and she was sitting there by herself, until again, she was eventually moved.    Rett Syndrome or not, it’s just really hard when as a mom, you see how your child feels from the little things that happen throughout the day that may make her feel different, and/or excluded.  I talk to Claire about how everyone is different, and that’s okay because that’s how God made her and she is so special.  But the exclusion and division part between she and others, and how this affects Claire quite frequently, is what’s really hard to see.

The inner strength that Claire has truly amazes me.  That, along with her patience towards others.  Due to her having chronic constipation, she is so tired of her belly hurting, and how when it hurts, it makes her very upset for sometimes hours at a time.  She wakes up at night and is thirsty, but nobody’s around to notice or help her, and she cannot say anything or come in our room to tell us, so she eventually falls back asleep.  Or, like last night, she wakes up in the middle of the night, crying.  I go into her room, and see that she looks so scared.  She probably had a bad dream.  I remember as a little girl, when I had a bad dream, I felt such comfort in telling my parents what my dream was about.  Telling them about it helped clear my mind so I wouldn’t be scared anymore.  I want to get to a point where somehow she can tell me what is making her scared.  Until then, I hold her close and tell her I understand she is scared, and that I love her so, so incredibly much, and I pray that this is enough for her, for right now.

This little girl… my Claire…  she truly is my angel on Earth.  Her smile takes my breath away, literally.  She teaches me more about life than I could have ever imagined.  She continues to remind me to be thankful for the little things, because those little things are really big things.  To see her face light up when she feels understood makes me so happy.  When I see others tune into her and help her feel included by doing whatever it may be, I definitely notice the happiness in Claire’s eyes and appreciate those people and those moments.  This little girl has turned our worlds upside down and inside out.  🙂 Her laugh, her sassiness and her sweetness make her our beautiful little Claire.

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Rett Syndrome takes so much away from Claire, and I am slowly starting to realize that this isn’t a bad dream I’m having, but it’s real, every single day, and it’s not going away.  This is the way God intended it to be for some reason, and although I do not understand why God would want any child to face such challenges, He has a plan.  I try so hard to focus on this and the positive.  I try to focus on the many, many blessings we have and were given before Rett, as well as because of Rett.

As I’m finding out though, sometimes this isn’t enough to keep me from still feeling the sorrow I do for Claire, especially when I see how certain situations make her feel.   As the hurt I feel inside continues to grow deeper, the harder it is for me personally, to process it and then take it a step further by talking about it, or writing it down.  So maybe I just stick with the high level updates on this blog regarding Claire, while also connecting you to beautifully written posts from others in the Rett community, like Marta, regarding the other “stuff.”   The Rett Community is one of a kind. The families, the connections, and the camaraderie between everyone is again, hard to put into words (ha) but pretty incredible.  There’s a national Rett conference at the end of June I’m really hoping I can attend for the first time, because I want to personally meet the many people I’ve gotten to know virtually.

At the end of October, which is National Rett Syndrome Awareness Month, we put together a video message from Claire to her “Rett Sisters.”  It was to remind them that everyday, there are people fighting for them and for a cure.  And until then, it was a message to keep trying and keep fighting.  The strength, the patience and the unconditional love that these girls have within them, is simple amazing.  I only posted this video to Facebook back in October, so my apologies if you are now possibly seeing this for the first time.  But, to all of those girls like Claire who work so hard every single day… keep it up.  You are our inspirations.  Know we believe in you, a cure is on it’s way, and until then, keep Roaring.

– Colleen

Off to School

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So next week is a big one.  Claire’s first day of preschool.  On Wednesday, I get to drive up to her school’s breezeway.  Claire and I will be met by her 1:1 aide in the drop-off line and I will put Claire into the school’s stroller they have reserved for her.  I will tell her how excited and proud I am of her, and how she’s such a big girl.  I’ll tell her I’ll be back to pick her up in a little bit when her school day is over, and to have a great day.  Then I’ll give her a huge hug and kiss, tell her “see you soon” and I love you… and away they will go into school, and I’ll continue to proceed through the drop-off line before exiting the parking lot.  Wow.  My nerves are out of control right now.  Not only is Claire my youngest, going to school for the first time ever, but she’s “Claire” and letting her go into the world for the 1st time by herself, is beyond scary.  I’m sure I’ll be fine once I get used to it, and I am sure this is 99% harder for me than it will be for her.

I am truly happy for Claire though.  I think this will be great for her – not only from a learning perspective, but for a social and play perspective as well.   I am at peace with our decision to send her.  We’ve met with the school many times over the past few months (technically our first meeting with the school was in January – so 8 months ago!) and over this time, we had a lot to discuss.  The overall experience was emotional and tiring (mostly because this was our first time going through all of this), and it required numerous hours of preparation as we mentioned already.  But it was worth it.  I feel we’ve prepared the school as best we could to understand not only about Rett but about Claire.  And, I feel we’ve set Claire up for success come her first day, best we could.  The school has been great to work with and they may still think “we are the crazy parents – probably a tad over the top” (I joke with them all the time about this) but I also think, since many of them are mothers themselves, they really understand the importance of advocacy in general and they’d do the same themselves for their child.

I feel good about this.  I am excited for Claire.  I think this is going to be okay all around.  I am still super nervous and scared, don’t get me wrong.  When the teachers showed me Claire’s room the other day, I most definitely got teary eyed when I saw her cubby, her circle time area, her desk area, among other things.  I can’t imagine her being there and me not being with her.  We “get” each other because we are together all the time.  We goof around, and have fun.  I believe in her, and I know what makes her tick. We also get through the really hard “Rett” days together too, and although it’s hard to put those moments into words, I will say there is a comfort in knowing we both get it, are on the same page, and agree that Rett Syndrome, truthfully stinks sometimes!

I’d like to share one document I put together for her school staff.  It’s an “All About Me” presentation.  I met with the school staff this week and we went over this specifically.  I’m sharing this because maybe after reading through it, you will learn something new.  Maybe about Rett.  Or maybe about our Claire Bear.  Her personality right now is hilarious.  She’s into a lot of teasing… and enjoying every minute of it.  Enjoy! –Colleen.    >>>> CLICK HERE <<<<

Support Claire – enter to win!

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UPDATE:

Congratulations to Ryan Quinn for winning 2 Club Seat tickets and 1 parking pass to the Browns game of his choice!

Special thanks to Tim Reilly who championed this idea, and for the 2nd year running, donated the tickets and the parking pass.

Thank you to each and every one of the 46 of you who participated in the raffle.  Your support helped raise more than $1,900 – 100% of which goes directly to The Reilly Irrevocable Trust.  Both short and long term, the Trust allows us to provide Claire with the medical necessities and care she needs when we wouldn’t be able to otherwise.  Your prayers, words of support, your participation in this raffle – all are very much appreciated.  Thank you for being a part of and making a difference in Claire’s life.  Thank you for being on this journey with us.

– Sean & Colleen

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Enter online to win two (2) Club Seat Tickets and one (1) Parking Pass to the 2013 Cleveland Browns game of your choice!

100% of the proceeds are payable to The Reilly Irrevocable Trust for the benefit of Claire Reilly, an amazing 3-year old girl fighting a daily battle with Rett Syndrome.

Click here to read Claire’s Story and click here for recent updates on her progress.

ONLINE RAFFLE CLOSES AT 11:59 PM 9/6/13 – WINNER TO BE NOTIFIED VIA EMAIL

The raffle winner will have their choice of the following Browns home games:

  • BUFFALO BILLS – Thursday, October 3, 2013 at 8:25 pm – OR –
  • BALTIMORE RAVENS – Sunday, November 3, 2013 at 4:25 pm – OR –
  • PITTSBURGH STEELERS – Sunday, November 24, 2013 at 1:00 pm

Tickets are located in the Lake View Club Level at FirstEnergy Stadium in Section 328 (Row 16, Seats 1-2) and the parking pass is for the W 3rd St. Lot.  The package carries a face value of $280.

WHAT IS RETT SYNDROME?

Rett Syndrome is a rare and devastating neuro-developmental disorder that condemns 1 in every 20,000 little girls to an entire lifetime of challenges.  These girls are born just like most others and develop normally until 12-18 months of age when they suddenly begin to lose acquired skills.  They are robbed of their ability to speak, walk and use their arms and hands – requiring 24/7 care.  ‘Silent Angels’, as they’re often referred, continue to develop mentally only to be trapped by their inability to communicate.  As they grow older, these girls struggle with disrupted sleep patterns, breathing disorders, scoliosis, fragile bones, seizures, digestive disorders and heart problems, even suffering sudden death.  Rett Syndrome currently has no cure and there are no treatments.  Medicine can offer only supportive measures such as feeding tubes, orthopedic braces and surgeries, and trials of standard seizure medications which are often ineffective.

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Summer Fun

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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.

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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 4th 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.

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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

Update to themed activities

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Going on week three for the ‘themed activities.’  Here’s a quick recap, followed by some video of Claire herself in the midst of the action.

We went with a St. Patrick’s Day theme for week one.  It started off a bit shaky.  I wasn’t sure if she was really into this… especially when I told her ‘no electronics’ and we were going to do some other work.  Slowly though, she warmed up to this idea.  And just as she was warming up to everything, I ended up getting sick, which put things on hold for a little bit.  Claire’s physical therapist, Amanda, helped remind me though that it was okay if the “theme” lingered on for more than one week. 🙂  Thank you, Amanda!!  You are very right — life gets in the way (but hearing this also made me relax a bit when we approached the second week and I did not have anything new planned.)   Setting the expectations of having a new theme each week is great in perfect land.  But we don’t live in perfect land, and as I type this, there’s a sink full of dirty dishes, and my goodness, the laundry is overflowing, along with emails and phone calls unanswered, piles of stuff to put away in each room, etc.   But today, Claire and I had a great day, I made a great dinner (why great? Everyone loved it… I’m considering this a win, as it’s not often this happens) and I had some wonderful quality time with the boys when they got home from school.  In perfect land, I can wear all of the necessary hats in a given day and wear them well.  In Reilly reality land, if it takes me a couple weeks (instead of one week) to accomplish a “themed activity” or any activity or project for that matter, I’ve learned to be okay with this, as there is only so much time in a day.

So back to the themes….  we stuck with the St. Patrick’s Day theme for two weeks.  This week, we are focusing on Easter.  Here’s a video (and some pictures) of what we’ve done so far.  It may be tough to see as you look in from the outside, but below are some examples of what (and why) I chose these activities.

The Easter Egg hunt, and the other activities accomplished the following:

1. Physical Therapy – Claire worked on her motor planning and walking skills.  She often knows where she wants to go, but telling her brain how to get there and actually doing it is challenging for her.

2. Each Easter Egg was filled with cheerios because I wanted to incorporate part of her breakfast.  We filled up six eggs, and we got that number from a “Spot Easter Egg Hunt” book we decided to model.  I added an extra egg filled with jelly beans though.  Jelly beans for breakfast too?  Why not.  Added silliness is a bonus.

3. Occupational therapy – She used her ‘fanny pack’ to help gather the eggs since she cannot hold a basket.  We then practiced hand over hand so she could put each egg in her pack.  Later in the video, you’ll see her practicing her OT by attempting to feed herself cheerios.  This is often times hit or miss… but practice is important so she doesn’t lose this skill moreso than she already has.  Finally – we put Easter/Spring objects into her sensory bin, and we played with that.

4. Music – We incorporated a funny bunny song, and she loved this.

5. Math – We counted the eggs, and sorted the cheerios from the jelly beans.

6. Colors – We described each color… followed by her watching a Baby Einstein video on colors.

7. Pretend play – She dressed up as a bunny.   We also pretended she was Spot, gathering his eggs.

8. Art – She colored an Easter Egg, and additional Spring coloring book pages, and decorated each one with Spring stickers.  I helped her by doing this activity hand over hand (OT), and we listened to a few more Easter songs at the same time.  We “puuuushed” the stickers onto the pages, using her left hand, since she’s lost ALL movement in her left hand – any attempt to try and get this back is worth the practice.

9. Speech – I’ve recently learned the Boardmaker software program (I love it!), and therefore was able to customize and print out a “play page” for her.  (see picture)  I also used the iPad to customize other activity boards, where she chose the next activity, and we would go from there…

I am liking these themed activities.  They help me organize my days, activities, therapy homework and thoughts.  There’s a little bit of preparation that goes into each theme, for sure…. but it’s fun.  The boys are really enjoying this as well.  They get excited to join in and that makes everyone, especially me, happy because they are all enjoying an activity together.  Win win, for all.  Happy Easter!!

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