Seven Years Later

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Sounds, often smells and certain times of the year are memory triggers for me.  This time of the year, mid to end of June sometimes is a difficult one.  Everything about it from the way the morning sounds as I sit outside and have a cup of coffee before the kids wake up, to the smell of the air in general throughout the day, to the way the days get longer and the sun sets later each night… all of it, brings me back like it was yesterday, to a life changing moment that occurred seven years ago on June 22nd with one phonecall.

Seven years ago, we entered into a new world… one that would forever change me as a person.  We heard the confirmed words of “Claire has Rett Syndrome” and had no idea what it was and what the future meant for our little girl who was 14 months old at the time.

When Claire was first diagnosed, someone once told me that things would get easier through time.  I questioned everything they said, not understanding at all how this could be possible because the life I thought my daughter would live had completely changed to a life that would be extremely difficult not only for her, but for my boys, my husband and myself.

I went into a dark place. I couldn’t concentrate.  I didn’t sleep.  If I did sleep, I woke up with nightmares.  I went through a period where I zoned out and found it tough to keep up with the outside world.  I was angry. As a mother, I felt a deep sadness in my heart that I never knew could possibly exist.  I couldn’t, in the slightest, comprehend all that was about to take place with Claire and what was in store for her future.  My memory shut down and there is a lot during that first year post diagnosis that I don’t honestly remember.  I was no longer the happy go lucky girl/ woman I naturally once was and it was tough to adapt to this new me.  I was 30 years old at the time, and many days, I wasn’t sure how I was going to make it another 30 days… getting through one day was hard enough.   I was beyond devastated as I looked into my little girl’s eyes, knowing more about what was in store for her life than she did at the time… and I remember wondering how in the world I was going to help her every step of the way as she lost more skills over the years to come.  I remember wondering how this would affect my boys who were ages three and five at the time, in the years to come.  How would this affect Sean and me?  None of it was going to be easy.

This diagnosis was out of my control… many things in life are.  It was just a lot to take in – all of it – and it all happened so suddenly and out of the blue after a completely normal and healthy pregnancy and first year of life.  So – all this being said… how could things possibly get better – or easier?  The person who told me they would, I wondered… how did they get to that point, and would I ever feel the same?

It’s been seven years. And this morning I told Sean, “Happy Anniversary.”  He looked at me like I was crazy (not out of the norm, haha) and with a smile on his face, he said, “Not so sure it’s a happy anniversary.”  But I told him yes… it was this time.  Because my gosh – look at what we’ve been through, and look at what we’ve gotten through together.  It hasn’t been easy, true.  But it really has gotten easier in many ways and it’s important to focus on this.

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With every setback or difficult situation especially relating to Claire, I’ve naturally become more and more resilient towards “life.”  My skin grew thicker.  My perspective and priorities changed.  I’ve learned by default to not freak out about the little things I used to think were a big deal, because they were so not.  I learned where my energy needed to reside… and where it didn’t.  I learned a lot about others.  I learned a lot about myself.

A few weeks ago, Claire got her wheelchair modified because she had outgrown her old seat, leg and arm rests, etc.  It took months to get to this point with the paperwork, measurements, quotes, denials and finally approvals before the actual changes could be made.  We worked with her great school PT and company who helped make this process a lot easier than it had been in the past, and I was so very happy when the day finally came where they were able to rebuild what needed to be done for a while.

They were going to work on Claire’s chair during her school day originally, but Claire ended up being out sick the entire week.  So instead of cancelling her appointment because she wasn’t able to get to school, both her school PT and the company came to our home to work on it.  The man from the company who made the changes did so from 9am – 6pm and only stopped for a few minutes when he took a lunch break.  Meanwhile, Claire had a fever, required constant suctioning and nebulizer/ the VEST treatments and she literally needed nonstop hands-on care the entire day.  She wasn’t in great shape, and it stunk that she was missing the last days of school because those were the extra fun ones! Yet, as I sat next to her, I remember having one of those moments where I felt a “win.”

Because despite the current situation of her not feeling well, I was happy because I knew her chair would be way more comfortable for her to sit in, and it would also give her more support.  In this moment, I also realized how far I’ve come over the years with the way I processed information. Because I can still picture the day where I took Claire to get fitted for her very first wheelchair when she was a toddler. That day was not an easy one to say the least.  But here we are years later, and instead of being sad that Claire’s in a wheelchair, I was genuinely celebrating the fact that the day had come where she was finally getting the wheelchair modifications she needed and it would make her body feel a lot better.

Time heals a lot.  And it gives you the opportunity to grow and learn about yourself – about what tools you need to help you get through the harder times – so that when additional setbacks occur, you are more groomed to handle the blows more gracefully.  With time, you gain experience, wisdom and grit.  You learn what works well when advocating, and what doesn’t.  You learn how to better organize medical information and prepare for big meetings.  You learn who you want on your team caring for your child, and who you don’t.  You learn what you have control over, and what you don’t.  You learn what battles to pursue and which ones to let go.

Time has given me the chance to learn my true inner strength.  It’s amazing how God gives you the grace to get through situations you never realized you had the ability to get through.  I’d be lost if I didn’t have my faith and for that, I’m grateful because although growing up my faith was always strong, it’s nothing compared to what it is like today. Claire recently made her 1stcommunion and it was the happiest we ever saw her… she was all smiles from the moment she woke up to when she went to bed.   She worked hard to prepare for this day and we were blessed to have an incredible PSR teacher who connected with Claire so well and taught her many things.  She continues to work with her now.  Faith has helped me overcome many obstacles so far in my life, and it is so important for me to try and give all three of my kids as many opportunities as I can to help them grow in their faith.  The leaders of our church were very supportive in working with me to help give Claire the opportunity to make this sacrament.

Seven years later, setbacks still occur and those times of darkness are definitely still there, testing me every step of the way, believe me.  In March, Claire was hospitalized for a week due to what was possibly a bone infection of the hip.  The pathology reports confirmed dead bone in her left hip, which explained why she was experiencing a lot of pain.  This condition may improve over the years (we are hoping) but we aren’t sure.  Our goal every day is to help treat and try to minimize her pain… some days are better than others.  But for now, we know she’ll have chronic pain in this area because there is no blood flow to this bone and it’s essentially dying.  (The fact Claire is young though is a good thing because hopefully the cells will regenerate and things will recover.)

I remember being in the hospital, wondering what this now meant for her everyday care and routine.  I needed to completely start over.  Because with Rett, it’s best to keep her upright and standing/ walking as much as possible.  It helps with her tight muscles, chronic constipation, growth and strength in bones.  Prior to the hospital, she’d be in her stander 2-3x a day for up to 45 minutes each time.  And she’d walk laps around the gym or home.  She had no problem bearing weight which helped us with transfers.  We had our routine and schedule.  However, now all of a sudden, things have suddenly changed…  again. Upon leaving the hospital, Claire could only stand on one leg for up to four minutes before crying.   Rest was best for her hip.  So how do we address what she needs from a Rett perspective while addressing what she needs now?  How much is too much and how do I help now manage her care?  When she came home, every little transfer hurt her.  She cried a lot the first few weeks post hospital visit, in pain.  In the hospital, we were followed by the orthopedic team and the infectious disease team.  I heard the words “this is rare for a child.” And I laughed (and cried).  I had flashbacks to the exact words I heard from Claire’s neurologist when she said we have to test for Rett but that it was rare – however we needed to rule it out.  How much can a little girl endure?  Yet she still manages to smile through the tears.

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Claire’s new diagnosis with her hip has nothing to do with Rett.  I reached out to the Rett community and her Rett specialist in New York, and nobody else ever had this issue.  Claire is one in a million, I’m telling you!

Oh, but this girl… She continues to be our angel.  Our sunshine.  She brings us so much joy and teaches us the definition of perseverance and grace among so many other things.  She’s eight years old now…  still super sweet and happy (when feeling well).  Still loving her music and her activities.  She’s so funny.  Like REALLY funny and she knows it.  The more you get her going, the more she’ll ham it up.  She knows what she wants and likes.  She has no problem telling you her opinion on things especially if she doesn’t like something.  She recently wrote a newsletter with her eye gaze device that I’ll share soon so you can get a better idea as to what she’s into these days.

Our newest hurdle as of this past week, which hopefully won’t turn into anything, is the question that came from Claire’s eye doctor, who wonders if Claire had a stroke at some point over the past year which is when she had her last exam prior to last week’s.  He has a few reasons for thinking this, but the biggest one is that she’s no longer tracking to the left in ways like she did before.

Yesterday, we had a follow up with Claire’s neurologist (the one who diagnosed her) and she thoroughly examined Claire.  She’d like Claire to get a MRI because there are other signs regarding Claire’s left side of her body that has changed over time.  (And not changes that align with Rett Syndrome)  If it was a stroke, everything would have happened at once. However, with Claire, these changes to her left side have been gradually happening.  The reason for the MRI is to rule out any findings on the brain that would be progressive, such as a tumor or something else because if there is something, there could then possibly be a treatment for it and we’d know what the plan of action is going forward.  If it’s nothing, we know this too.  Either way, more to come.

Overall though, Claire’s “Rett stuff” continues on and things are going well.  I still take her to her weekly physical, occupational and speech therapies.  These services also happen one time a week in school, in addition to her receiving vision therapy due to her cortical vision impairment.  She’s in a great place at school and has a strong team supporting her. She received a feeding tube two years ago.  She still gets botox in her legs and now she’s also getting it in her upper extremities on the one side due to tightness.  We’ve been seeing her pulmonologist more frequently to address respiratory topics. She continues to get her regular EKGs.  Her GI and I still work together to address her acid reflux and constipation issues, along with her g-tube button. GI, nutrition and I work together to address her food and water intake.  Neurology and I work together to address seizures, etc.  The list continues on.

We recently had her well visit with her amazing pediatrician, and upon leaving, he told me, “you have become a veteran.”   It took me a moment to understand what he meant. We were going through Claire’s recent medical challenges, talking about the latest hospitalization she had, and I was bringing him up to speed on everything.  I was very matter of fact with my updates.  I’ve become so used to these visits… used to filling people in on her latest… used to accepting the new normal – whatever it was – and updating accordingly.  Hearing him say this to me though, was one of those moments where I had confirmation that I guess I did progress a little and things did get easier in time.  Because this was the same doctor who once gave me the advice to just focus on the next six months of Claire’s life and that’s it.  The reason he said this was because during our initial visits, I was overwhelmed and anxious about many things.

Now, don’t get me wrong… grief will still hit me out of nowhere and knock me out for a little at times.   My husband recently took my oldest son to Cooperstown, NY for a week long baseball tournament.  He is not a coach, however he is in charge of running the team, taking care of the administrative items, logistics and financials.  He needed to stay with the two other coaches and players in the barracks because only Sean knew who needed to be where, when, and how everything worked in order for the week to run smoothly for the team.  We decided it didn’t make sense for Claire, my other son and myself to go because if we went, we’d have to stay by ourselves.  There wasn’t tons for us to do outside of going to the fields, and the downtown area wasn’t very wheelchair friendly.  Claire is 65 pounds now, and her new wheelchair is even bigger and heavier.  My back is a mess, so me doing all the lifting for the week – getting the wheelchair in and out of the van without Sean’s help is especially harder these days.  But not having many places to go to where we’d be able to fully access things… it just didn’t make sense.

I didn’t realize until they left, how hard this week with them away would be for many reasons.  I was angry at Rett for the first few days and mad we couldn’t be there as a family.  But – like other instances, I felt (the feelings that are normal that sometimes come with this diagnosis), I dealt (I acknowledged what was, and I let it be)… and I soon got over it because what is the alternative?

I refuse to let Rett get and keep me down because I’m not the type of person who likes to be angry, bitter or feel defeated.  Like I mentioned before, I was always a happy and optimistic person, and I like this version of me better because it’s more natural for me, and peaceful.   It’s taken some time and practice, but I refuse to let Rett (and now her other issues) dictate my attitude in life.   Yes, my attitude will need adjusting at times – especially during the harder times… and there will continue to be good days and bad.  However overall, I guess we really have come a long way in these past seven years because our good days definitely outweigh the bad ones now, no matter what is going on… and the opposite used to be true.  And this is kind of a big thing… a good big thing.

So yes.  I think that person was right… things did get better.  And I am extremely grateful for our progress so far because this is definitely something I never realized could become a reality, back on June 22, 2011.  Claire, we love you more than words can possibly describe… you truly are our angel.

When I was Five…

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by Claire Marie.

When I was five, I:

Joined my first baseball team. We were green. I played all positions.

Went racing on my first ever go-cart ride.

Got my ears pierced!

Fell asleep on a raft in Lake Erie. Several times. It was so peaceful.

Went shopping at “Justice” clothing store for the first time ever. I’ve officially graduated out of the “T” club. (5T and below, no more!)

In fact, when I was five, I grew so many inches in such a short time, I’m pretty sure I broke some crazy record. I am tall. I’ve gotten fitted for a lot of new equipment that hopefully I’ll be able to get.

I went bowling a few times.

I went on a 5 day AAC summer camp in Pittsburgh with my Rett sister Gabby, and our moms.

Shhh.  I possibly developed my first crush… on Bruno Mars. (Don’t tell my Dad!)

I danced in my first recital with the only guy in the world that matters: my Dad.   (You can tell him this, though!)

I won the award of being “the best cheerleader ever”, as I supported my brothers’ million sports games between baseball, football and basketball. In fact, I wanted to be a cheerleader for Halloween, and I was.

I understood what it meant to have a really good friend. My first official BFF actually, Molly.  Being with her makes me so happy.

When I was five, I went to the most magical place in the world: Disney World!  I made lifetime memories with my grandparents, my aunt and my family.

I saw my BFF, Molly, while we were in Disney World – how “cray!” (as we would say with my talker) was that?!

I rode my first rollercoaster while at Disney. I proved to be quite the thrill seeker and I surprised my parents.

I lost my first tooth! The tooth fairy visited me, and my Dad and brother took me shopping; I got to pick out my own toy with my very own wallet and money.

When I was five, I felt so loved, safe and happy at school. My teachers knew me best and took really good care of me. We learned while having fun! I am going to miss them. A lot!

I also understood how cool it is to get your fingernails painted!

I enjoyed playing with my cousins. It’s cool that Colin is old enough now to join us on the trampoline. Little Ethan, was born in November; he’s adorable, and pretty soon he’ll be joining us on that trampoline!   Caitlin is going off to high school.  No matter the gap in age, we all have fun together and I love being with them.

I loved spending time with my brothers. They’ve been helping me a lot more than ever before with many things. We attempted to bake a few times, all while making fun of Mom since we all know she’s a much better cook than baker.   P.S. The cookies turned out okay – not sure how, since she never measures anything!

I got an adapted spinner for Christmas and had more and more nights of family game night… Love!

When I was five, I also:

Rode my first ambulance ride from one hospital to another with my mom, followed by a  stay in the PICU.  This was scary.

I broke my previous record of hospital stays in a year.

I lost the ability to swallow consistently, and received my first feeding tube as a result. Since receiving the feeding tube, I had to get it replaced 4 times within 2 months due to complications. I am still not out of the woods with this. But hoping to get there soon because I really miss swimming.

I had some bleeding issues with my ears. I didn’t like how it made me sick when they had to flush my ear the day before Christmas. I may need to get surgery to get some of the bleeding issues resolved. I will find out in a couple weeks what the next steps are.

When I was five, I was lucky to have a couple really amazing people (nurses) who helped take care of me when my mom couldn’t. They became a natural part of our family and made me so happy for a long, long time.  I also learned how it was hard when those people had to move onto other things and I had to say goodbye to them. Finding a replacement was hard not only on me for many reasons, but also on my brothers and parents.

I flew to New York to visit my Rett specialist again with my parents. While we worked hard when we were there, we also had fun swimming, eating New York Italian food, and just hanging out at the hotel.  I lost pretty much all ability to take even one step by myself now.   My overall balance isn’t what it used to be.   This time last year, I could walk (with assistance nearby) for a short distance. My doctor thinks I regressed so much because I grew so tall, so quickly, plus my heel cords and hamstrings are so tight. My doctor told my parents how aggressive they need to be this upcoming year with my physical therapy plan, because if I don’t get this skill back within the next 12 months, it will forever be gone. My mom set up a plan and I’ll be working hard on this, big time… even if the goal is to take just a couple steps by myself again.

When I was five, I worked harder than I’ve ever had to work before with my body, to keep it from giving up on me further.

So, that was then.

And this is SO NOW…

Now that I’m SIX!, I:

Will continue to play on my baseball team. Maybe I’ll start to focus on a couple positions this year.

Want to try new rollercoasters and faster go-carts. Who knew I’d love these so much?!

I love looking through the clothes that I’m getting from older girls who are friends of my parents. I look like a rockstar and I am a lucky girl to receive these from them.

I will continue to love Bruno. (Sorry, Dad)

My dance for my dance recital this year is with my friends and I’m so excited. (Sorry, Dad, again… I’m growing up but you’ll always be my #1 – you know this!)

Now that I’m six, I’ll continue to be the best cheerleader/ sister in the world. On top of baseball, football, and basketball, now they are doing track too?! Maybe this whole cheerleader thing comes with a limit. Jury’s not out on this one, just yet.

I have a lot more teeth to lose… in fact, two are getting pulled in a couple weeks and one is loose.   The tooth fairy better get a second job to keep up with my progress!

I will be transitioning into a new school. Like, starting next week. I’ll be riding a school bus. I’ll be attending full day (for part of the week). I’ll be meeting a lot of new kids. Hopefully meeting new friends. I’ll be learning tons, and pretty sure I’ll be tired a lot at first, and nervous too. I am going to miss Molly. Big time. I’m going to miss my old teachers. But I’ll still see Molly at therapies and our moms are going to get us together. My mom tells me, “Make new friends. Keep the old. Some are silver and the others, gold.” I’m pretty sure Molly is one of the gold ones.

Now that I’m six, I got a foot spa mini tub for my birthday. I’m going to continue enjoying my girl time, while getting those finger (and toes) painted!

I am SO excited to have two new (like freshly new!) cousins, Caiden and Kieran! I’m sooo the older cousin now, and can teach them a lot of fun new things soon!   They are so cute and I can’t wait to meet them.  I love all my cousins!

Since I’m taller, I need new AFOs. (Ankle, Foot, Orthodics)   I picked out the design myself. They, of course, have dancers on them. I get them in a couple weeks. A girl can always use a new pair of shoes!

Now that I’m six, my parents will never again worry about me not getting enough hydration, or medications, or food if I’m having a hard time swallowing. As much of a pain the complications from the feeding tube have been, my parents and I agree that this was the best decision in the world!  No regrets whatsoever. I even got a new bathing suit which I’m ready to use once my doctor tells me I am fully healed and can go swimming again.

A few changes happening right now at home to help me get around easier. More to come on this soon.   But I just picked out my paint for my new room, and I’m super excited!!

Now that I’m six, I’ll continue to work hard. Because this is still very important. While I may not classify as “early intervention” anymore, repetition is important for my body.   Every Monday, my mom will continue to take me to occupational therapy, physical therapy and speech therapy. Every Monday night when I go to dance, my brothers will be in the next studio playing piano. Every Tuesday through Thursday, I will go to full day kindergarten now. This is the year I’ll learn how to read and write. Every Friday, I’ll go ½ day to school, and then my mom will pick me up to take me to swim therapy before having music therapy. On Sundays, I’ll have my baseball.  Everyday I will continue to work on my in-home therapy program and daily exercises.  Inbetween  all this, I’ll be sleeping. (Umm, yes!)  Or playing. Or of course, watching my brothers play baseball/football/basketball/ track, or whatever in the world they are doing.

Now that I’m six, I have another whole year ahead of me to make great new memories and overcome new obstacles, whatever lies ahead. Each day, I get stronger. If not physically, I get stronger mentally. I overcome. I’m not a little girl anymore people… I’m SIX now. I may have Rett Syndrome, but Rett Syndrome doesn’t have me.

 

 

 

 

 

Basic Overview Of Rett

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We were recently asked to put together something that not only helps explain briefly what Rett Syndrome is (see video below), but also shares from Claire’s perspective what it is like for her to live with Rett.

Claire is our third child, our baby… born healthy and happy 5 years ago.  She met all of the developmental milestones her older brothers had met within her first year of life.  She said “mama” at 5 months; followed by “baba”, “dada”, and “ma” for more, or “don” for all done.  She sat up by herself, pulled herself up from sit to stand, and walked.  She crawled; and once standing, was able to figure out how to sit again and move around.  She was able to go wherever she wanted.  She loved to play with her toys, and held everything she could get her hands on.  She especially loved holding her “Violet” stuffed animal, who, when she touched the various buttons, would play songs and make her smile.  She brought Violet everywhere!  She fed herself finger foods, and independently drank from a bottle or cup.  She was able to stand up in her crib in the morning to let us know she was “up” and ready for us to get her, after calling out to us.

When she was 12 months old, for a few months, her hands started to tremble uncontrollably.  She lost her smile and went inward.  She didn’t move around as much.  She had a blank stare.  She cried a LOT, and we had no idea why.  In hindsight, it was because she was confused and frightened, not to mention frustrated because she didn’t know what was happening to her body.

She was soon diagnosed with Rett Syndrome.  They told us the Rett mutation she had, was the most severe form compared to other forms, more atypical in nature, where the girls lose some skills, but not all.  As the months progressed, and fast forward 4 years, which bring us to today, despite the hours and hours of therapy each week, Claire lost an incredible amount of function.  Unless there is a cure for Rett, she will not get any of those skills back.  At least, the chances are very slim.   But we still go to therapy because of the small chance it could happen.  Plus we want to keep her muscles as strong as possible, and keep the pathways in her brain working, so she can maintain her current level of skill.

She is totally dependent on others for everything.  Her physical function and ability is the same as an infant under 6 months.  Only, her body is definitely bigger and will just continue to grow.  Mentally, emotionally, and cognitively, she is also age appropriate.  She is just like any other 5 year old; only she’s trapped physically inside her body, with no words to express how she feels or get someone’s attention should she need to.  She depends on others for everything, to get her everything she needs.  A drink.  Food if she is hungry.  Change her positioning if she’s uncomfortable.  Does something hurt her?  What is making her sad or mad?  What is she so excited about or what story does she want to share with you?  The list goes on and on.  The easiest way to describe Rett, in my mind, is to compare it to a kid like version of ALS (loss of physical, not mental/ emotional skills), sprinkling it with autistic type tendencies (sensory issues), plus a lot of medical issues.  I want to keep her little and young as long as possible: I hear from other Rett moms how difficult the teenage years are because you have added hormones and emotions.  So – focusing back on today…

I am humbled everyday by Claire’s ability to keep going and to keep fighting… many days with a smile on her face.  As her mom, I wish I could do the same.  5 years later, it still breaks my heart in the deepest way that I cannot explain in words.  I may appear happy and strong, but deep down, I am not.  Does it get easier to watch Claire suffer every day?  No.  It gets harder, and as she gets older and as I see what other 5 year olds are doing, plus children younger than her, I can only imagine what’s going on inside her mind.  That’s the part that makes me sad.  Going to parties and outside events is tough; I’m not going to lie.   I try to push those sad thoughts that I have for Claire out of the mind;  I try and include Claire with the other kids because I remember being 5 and running around nonstop, making up games with our imaginations, playing tag, being silly, and having so much fun.  Including her with peers her age is physically a lot of times easier said than done… so as a backup, we always have her music on hand…  we crank that up for her, because that will most likely always make her smile!

Things can be so much worse; this I know.  I am not posting this for any reason other than to truly share our truthful experiences with what Rett Syndrome is, based off being asked to do so.  We are blessed with SO much love from our friends and family.  The support is incredible.  It’s just that as a mom, when you see your child struggle, no matter what the situation may be, you know… it’s tough.

Anyway… here’s that video we put together.  Claire Marie… we love you beyond words, and are so proud of your ability to fight… every single day!!

A Year of Updates

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It’s been a year since I wrote in Claire’s blog. This post is lengthy, so if you are still interested in reading about her updates, you may want to grab a cup of coffee or your favorite beverage!

Physical Therapy:

In physical therapy, Claire continues to work on walking. She has good days and bad days. She receives botox in her legs every few months to try and loosen those muscles because they get very tight. She’s grown 3 inches in the past year. She’s received new AFO (ankle, foot orthotic) braces, and needs to now wear night braces along with knee immobilizers on both legs when she sleeps, and at points throughout the day. Doctors have checked her spine to see if it’s starting to curve. Scoliosis occurs in 75% of Rett girls before the age of 15. So far, no concerns on this end.

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Stretching Claire’s legs with her knee immobilizers.

Because Claire has gotten bigger, she’s having a harder time rolling over while in bed. A few months ago, she had gotten “sick” at some point in the night, but she didn’t make any noise. Sean and I had no idea she needed our help. In the morning when I went to get her up, she was covered in vomit. Obviously she couldn’t call out to us to let us know, but now due to her increased physical challenges, she was stuck and unable to move away from the vomit or reposition herself. This broke my heart. After this incidence, my mom helped me come up with an idea to velcro a “talk button” on a small pillow next to where Claire sleeps. If she needs us at night, she now “calls” us. If she presses the button, it says “Mom, Dad!” and although it’s not perfect because sometimes she still has a hard time accessing the button, it helps bring a little more peace to our minds.

As I mentioned before, Claire has grown a lot this past year. It’s not easy for me to carry her up and down the stairs anymore, and lift her in general. All transfers are tricky; I’m afraid of getting her leg caught or hurting her if I slip in some way. We have reached the point where we need to make some decisions: either we make some modifications to our existing home to make it handicap/ wheelchair accessible, or we move. We also need to modify our van so we can get Claire safely in and out of the car. This may include getting a specific chair that swings out of the van for the actual transfer, or getting a wheelchair lift installed.

Occupational Therapy:

Claire’s occupational therapist has worked very hard to create a “sensory buffet” for us to incorporate throughout each day. Claire can become unregulated easily, and because of this, she requires tools to wake her system up, calm her down, or provide other means of sensory input to help whatever the issue is.  I also now use essential oils to help regulate Claire if needed.

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The bubble tube helps Claire reorganize her senses.

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Claire loves to listen to her music while being in her cuddle swing.

With regards to eating, Claire lost the ability to self-feed completely but she has gained the ability to drink from certain types of straws! With occupational therapy, one of the biggest goals is to try and give Claire as much independence as possible. Now with Rett, because she relies on others for everything, we need to get creative in thinking of solutions to achieve whatever task we are trying to get her to accomplish. Some examples include programming a talk button so when she presses it, she can lead the family in meal time prayer. Or, if we are celebrating a birthday, programming her talk button so she can lead others in singing happy birthday. It’s important to give her a purpose and she has to do chores like the boys. Examples of her chores include wearing a sock on her hand and dusting surfaces that she can reach while being in her kidwalk, and having an adult help move her hands back and forth. Or, Claire is responsible some days for checking the mail. She needs to wear a backpack and practice walking down the driveway towards the mailbox. Once she gets there, with the help of an adult, she opens the mailbox, puts the mail in her backpack, and walks back to the house.   Claire’s occupational therapist is remarkable in her field; we are lucky that she has worked with Claire since Claire was 15 months old.

Aquatic Therapy:

Swimming is one of Claire’s favorite activities of all time. Her entire body relaxes when she’s in the water and her smile is huge! Along with doing their regular stretches and exercises, Claire’s aquatic therapist has been working on dunking Claire into the water little by little, along with getting Claire to tread water with as little support as possible. One long term goal we have for the house is to get a pool so Claire can feel the freedom she gets from being in the water… not to mention how good it is from a therapeutic standpoint.

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Claire floating on her back with just the support of one finger underneath her.

Communication:

Because Claire has lost almost all control and use of her hands, it was getting very difficult for Claire to access her voice output device accurately; she was getting very frustrated. Last summer, Claire got an eye gaze attachment that goes on her existing voice output device. This eye gaze technology gives Claire a voice by reading her pupils. When Claire looks at the button (aka: word) that she wants to “say” the eye gaze picks up on where Claire is looking, and selects that word, speaking the word so others can hear. Learning symbols and the eye gaze technology is truly like learning a new language. It takes a lot of practice, consistency and patience. Claire relies on others to make sure her device is on the correct page, (she’s not at the point yet where she can truly navigate around herself) in the correct position, working correctly, and turned up so others can hear it. If she’s on a page that she isn’t as comfortable with, she relies on others to press the buttons when they talk to her (aka: called “modeling”) so Claire can learn what the icon pictures represent and get used to it. A couple months ago, the screen on Claire’s device cracked. (Not good!) We are in the process of repairing it, so we’ve gone a bit backward in her overall use of the machine because currently, it cannot be used. We are also in the process of getting a loaner device that we can use in the interim. It’s a process that doesn’t happen overnight. Looking on the bright side of things though, when a high tech device like this breaks, you need to go back to the basics and ask yourself, “how can Claire communicate without her Tobii device?” Claire really misses her device; you can just tell. But without it, those around her need to use lower tech solutions so Claire’s needs, wants and thoughts can still be understood.

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Claire using eye gaze to talk.

We have less than a month to get Claire’s talker fixed (a little nervous about this) because Claire was accepted into an AAC camp in Pittsburgh at the end of July. It’s an “I Can Talk” camp, and it is open to 20 campers throughout the U.S.   The application process was intense and lengthy, and we are so excited that she was picked to attend. All campers are nonverbal and rely on a device to help them speak. Claire and I will be attending with Claire’s best friend, Gabby, along with Gabby’s mom Sara for a few days and nights. The agenda is super intense, not only for the girls, but for us moms. (What? Haha!!)   I’m praying for a good outcome as this is a big deal for us, not to mention pricey. We will be sharing joining hotel rooms again (we did this last year when we attended the Pittsburgh Rett Strollathon together) and it will be so much fun. It is so awesome seeing Gabby and Claire together. Even though we live about six hours apart, we try and get together as much as possible. I met Gabby and Sara at a Rett Conference in Washington D.C. last June. The second we met, we clicked. Since then, aside from meeting up for the Pennsylvania Strollathon, they came to Cleveland this past October for the Claire’s Crusade Reverse Rett Raffle, and then we attended the Cleveland Blue Sky Rett Event the next day. We absolutely love Gabby and Sara and are so very thankful for the friendship that has developed this past year between us!

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At Pennsylvania Rett Syndrome Strollathon.

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Claire’s first friend sleepover in Pittsburgh with Gabby.

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Gabby came to visit us in October for the Claire’s Crusade Reverse Rett Raffle, followed by the Cleveland Blue Sky Event. Here, they are enjoying the movement from Claire’s platform swing.

The other activities that Claire enjoys throughout her week include music therapy, adaptive dance (she just had her first recital; click here to watch: https://youtu.be/kVJpajuswS4) and now baseball!

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Claire with her dance teacher and music therapist… she loves them!

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Claire practicing her moves with her dance partner, Dad!

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Getting ready to play!

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Claire getting ready to bat. She presses a button, which will make the bat swing.

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Twirling with Dad.

Health:

Claire has always required 24-7 hands on care, but now, due to the more medically complex issues that have developed this past year, she now needs an in home nurse during certain approved hours. This has been such a godsend. In addition to helping Claire with her home therapy program, they help treat Claire medically given whatever the need may be – either seizure related, if she requires suctioning, breathing treatments, administering of medications throughout the day, etc.   We are very thankful for this service because it allows me to leave the house and get the boys to where they need to be, help the boys with their homework, go grocery shopping, run errands, and do my normal mom responsibilities, knowing Claire is in good hands and is getting the 1:1 medical attention she requires. I’ve looked into getting back into the workforce myself and actually had a few offers to do so. However, in order to do this, we will need more nursing hours along with a transportation service because her nurses cannot take her to school or therapies. I trust that when the time is right, I will be able to go back. Until then, I need to remind myself that what I’m doing today is what God intends.

It’s important for Claire to get her heart checked out via EKG and echo. So far no issues here, and that’s great news!

Last week, Claire had 10 seizures within a 4 hour period. This isn’t typical for her. The doctor told us to immediately go to the ER. Once we got there, she had more seizures, followed by an increase in temperature. Within the hour of being at the ER, we were transported (our first ambulance ride) to the ICU at main campus and stayed there for a few days. The doctors think Claire developed a viral infection, which caused the increase of seizures, along with a new type of seizure we haven’t seen before.

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No fun being in the hospital…

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The cheering committee (Claire’s brothers and cousins) came to visit!

School:

This is the subject that I absolutely struggle with providing updates on. This is the subject that is the most near and dear to my heart and where the majority of my energy is spent.

Claire attended her first year at school (2013-2014) at our local district special needs preschool program, which incorporated peer models in the classroom. Without going into detail, at the end of the school year, the day we had our final meeting with her teachers, therapists and school director, it was very clear to us that we needed a better fit for Claire. They made some decisions that completely blindsided us, and these decisions would set Claire back even further in her educational development. Claire went into the 2013-2014 school year with a love of learning and excitement to attend. She ended the year with a crushed spirit, low confidence level, and increased behavioral issues. Instead of progressing throughout this year, she regressed. After hours of advocating, multiple meetings and numerous attempts to help Claire and the school throughout the school year, the meeting that we had at the end of the school year helped me realize that in order for anything to get better for Claire, both parties need to want what’s best for Claire. It became very clear that in this school, in this environment, Claire would never progress, only continue to regress. I left that meeting with tears of anger, frustration and exhaustion. I tried everything to make this work for Claire at this particular school. I was angry that all of it was for nothing. (Hindsight is always 20/20: I now realize it was the best thing that could have happened.)   I was angry that this school made decisions that didn’t include our input (and they should have) and this was my final data point that I needed to realize I was done here. I told Sean after leaving that meeting that day that I refused to put her back into that program when school started in the Fall. No way. But what were my other options?

I instantly went into “school OCD mode.” I needed to find a place that would help fix her behavioral issues, help rebuild her spirit and bring her confidence back. I needed to find an environment where they truly wanted what was best for Claire, and in doing so, would be open and willing to learn about Rett Syndrome to understand how there is a certain way to go about teaching a child with Rett. There are things to do and strategies to try, and there are approaches in which you definitely want to stay away from.   Most importantly, I need to find a place where the people who are working with Claire would be willing to work with me and practice open communication because this is truthfully the only way it could work. (I recently had to contact her old school for a number of things because her IEP is still through that administration. Three months later, and after numerous attempts at trying to get resolution on certain items from them, I have yet to receive returned phonecalls and/or emails, etc. I’m speechless that this is okay. No child left behind, according to IDEA (Individuals with Disabilities Education Act)? Interesting. Okay, enough of this subject… I need to move on.

I was looking for a group of people who would believe in Claire’s potential, presume competence, and help bring her forward to the next level by challenging her. If not, as we’ve seen in the past, she will get bored, frustrated and shut down.   She knows when people believe in her. She definitely knows when people do not believe in her, question her intelligence, or just have an overall negative attitude or little patience (which isn’t good when working especially with a child with apraxia).

A month after her school year ended, I went to Washington D.C. for a National Rett Conference for a few days. It was amazing. I was surrounded by Rett scientists, Rett doctors, Rett families, and educational and communication Rett experts. I went there knowing 1 other family. I left there with having made lifelong friends and connections. I was surrounded in an environment where instead of hearing “She can’t do this… or she can’t learn this… or she doesn’t know this or that, etc.”, I heard “she CAN. They CAN. There is a way. Here’s what worked for us. Here’s what YOU need to do to help your daughter.  We understand. We are in the same boat. Never give up in your fight in getting her the education she deserves.”   Attending this conference was the absolutely best thing I could have done. I was home. It was emotional. It was absolutely wonderful. It gave me hope.

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Rett doctors and scientists sharing a lot of great information, including the updates on numerous Rett clinical trials.

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All of the Rett children and adults who attended the National Rett Conference.

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Finally meeting Jennifer (another Rett mom) in person. Jennifer was the one who reached out to me when she learned Claire was diagnosed.

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Proudly wore this around my neck all throughout the conference.

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Having fun with Kim at the conference. Kim organized the Cleveland Blue Sky Rett event and did an amazing job!

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Loved being with the other Rett moms!

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The dynamic duo: Susan Norwell and Judy Lariviere, presenting “Tots to Ladies Communication and Learning.” It was an amazing presentation.

Attending that conference also gave me much insight. It gave me the spark and confidence that I needed to continue on with my advocacy and fight in getting Claire into an appropriate learning environment. I was able to see what other families nationwide were doing with their daughters and how well their daughters, same age as Claire, same diagnosis, same challenges, were progressing. Being there reiterated what I knew in my heart: her environment at home needed to change. I left the conference with having had learned additional tools to implement into Claire’s educational program, knowing what was acceptable and what was not. I left the conference extremely thankful for having experienced what I did. My number one goal for Claire is to learn to read. This will unlock the world she, until there is a cure, will be forever trapped in. Teaching her to read and write is something that CAN be done with our Rett girls. I want Claire around people who want this for Claire, believe in this, and will be willing to overcome whatever obstacles that arise to get her there.

Since the conference, we were so lucky to have a world renown Rett educator, Susan Norwell (whom I met at the Washington DC conference), come to our house for a couple of days and work directly with Claire, Claire’s homeschool teacher, and Claire’s speech therapists. Then, a few months later, I flew to Florida to attend a Rett University workshop, given by Susan, to pick up on additional tips and techniques that we weren’t able to cover while Susan was at our house.   The gist of what we went through can be found at: http://www.rett-u.org/index_GAA5.html.

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Susan Norwell working 1:1 with Claire at home.

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Susan teaching the boys how to better interact with Claire throughout regular “play” activities.

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Working hard but having fun.

Claire came a long way from where she was a year ago when she finished her first year of preschool. She attended an individualized school program (at home) that helped her deal with some of the behavioral issues she faced, while also going through a Pre-Kindergarten curriculum and trying to incorporate what we learned from Susan and Rett University. Now, she is primarily attending a school, similar in form, however, outside the home with peers. We have ways to go and still face challenges, but that will always be the constant. What is the best update I can give you today, is that her spirit is back along with her love for learning… maybe not totally, but a huge improvement from this time last year.

This month of June marks 4 years since we received Claire’s diagnosis… June 22nd to be exact. Claire has turned into quite the little lady.  She got her ears pierced, is getting her 6 year molars (and her bottom teeth are loose, according to her dentist), and got a stylish new chic hairdo.  She loves getting her nails painted, we had a blast going to “Frozen on Ice” and she had an incredible 5th birthday music and dance party.  Her smile continues to light up the room, as does her big bright blue eyes. Her laugh continues to warm our hearts each and everyday.  We love you, Bear!

– Colleen

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Ears are pierced and Claire’s new haircut.

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Claire’s 5th birthday party.

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Claire’s 5th birthday : adapted dance and music party.

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Sleeping while getting her nails done… someone is enjoying spa time!

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Enjoying Disney’s Frozen on Ice!

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The kids and I walked in the Cleveland Rite Aid 5K, representing Claire’s Crusade.

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Sean running his first 1/2 marathon for Claire’s Crusade.

It’s Race Week! A Recap From the Original Start Line

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It’s about that time again – Cleveland Marathon weekend! A couple of years ago, I ran my first (possibly last, but not ruling it out just yet) half-marathon. Let me preface this by saying – I am not a runner, I repeat, I am not a runner. I was always an athlete, but long distance was never really my thing. My friend Jenn convinced me to train for the Cleveland Half Marathon. So we turned to our pal, Hal Higdon, for some running advice. He offers training programs from 5ks to full marathons – for all levels of runners. Being the novice that I was, I went with this 12-week training program.

So, back to the fact of not being a runner…I knew from the start I had to be extremely disciplined and follow this training program down to the day if I wanted to make it to 13.1. Before I even started the 12 training program I was already struggling, heading to the gym every day after work – trying to work my way up to 3 miles, no stopping. I was finally there, but motivation was already fading fast and the official training hadn’t even begun. After doing some research and poking around on the Cleveland Marathon website, I realized there were so many great charities out there that people were running in honor of. What better than to run for my baby cousin who was recently diagnosed with Rett Syndrome?

I contacted the friendly team at the Cleveland Marathon – who reached out to Sean and Col to get Claire’s Crusade all set up as a charity partner. I will say at this point – I was so excited, I had a REAL reason to run. Now not only did I have a real reason to keep on going, but so did many others. First to jump on board was my fave guy out there – my dad. I was begging him to join me (and let’s be real, I needed someone else who was a novice, because my friend Jenn was smoking me when we were training together). Once he heard about Claire’s Crusade becoming a partner of the marathon, there was no more convincing him.

We began building our team of crusaders and were well on our way to running 13.1 and rallying the whole time for Claire. The training was done and race day was finally here. The day was definitely a mix of emotions – excited to run my first half, pumped to do it rocking my Claire’s Crusade shirt, proud that we had a team of over 50 crusaders, a lot of pain when my legs didn’t want to go any further, motivated when I saw other crusaders out there running and cheering us along, a little embarrassed when my dad left me in the dust (remember when I said I wanted him to train because Jenn was smoking me, yeah – fail) and many, many more emotions. Whenever I felt like giving up and walking I thought about why I was doing this, for Claire. Claire won’t be able to run a half – and for that reason, I kept going.

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Crossing that finish line was especially emotional. It must have been physically obvious I was losing steam in the last mile or so. Colleen jumped in to finish that last mile with me – Col, I still owe you one for that. It was awesome.

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Year two of Claire’s Crusade being partnered with the Cleveland Marathon was another success – we went from 50 participants to over 150! We had one of the largest showings for charities involved with the marathon – how awesome is that!? This weekend, Claire’s Crusade will be represented by runners/ walkers/cheerers and new this year volunteers at the first water stop of the race. All 18,000 runners will pass our stop – so wear those Claire’s Crusade shirts proudly so we can cheer extra loud for you.

So, after all of that – I will again reiterate that I am not a runner – but I did it!

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Good luck to all of the runners and walkers participating this weekend – I’ll be at the water stop, so let me know if you prefer water or Powerade 😉  And remember… when you start to lose steam and don’t think you can go much farther, just think of that little blue-eyed, curly, blonde haired beauty – I’m sure that little smile will give you all the motivation you need! It sure did for me.

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– Written by Lauren Bolmeyer, cousin of Colleen & Sean.

(*** Thank you, Lauren, for all that you’ve done to help not only make this race happen for Claire’s Crusade in the first place three years ago, but for your continued efforts since, with helping plan and organize last year’s successful weekend, along with our upcoming one this weekend, which is going to be absolutely incredible!  There’s a lot of work that’s involved, and we are so very grateful for the time and energy you’ve put forth to make all of this happen.  Claire is surrounded by many people who love her and want to help the overall Rett cause for not only her, but for other Rett girls.  You are a perfect example of this.  We thank you, and we love you!!! ***)

Happy 4th Birthday, “Princess” Claire!

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Today we are celebrating another milestone for Claire… she turned 4 years old!  Wow… happy, happy, happy birthday, Peanut!!

We’ve been busy celebrating not just today, but actually over the past few days. Over the weekend, we had a princess birthday party and Claire invited four of her friends to “Princess Claire’s Cooking Class.” The girls all arrived dressed up in their favorite princess dresses. The party started out with Claire greeting her friends, using her Tobii talker. Each girls’ picture was programmed on a page, and when Claire touched their picture, the button would say “What’s up, Grace?!”, “Hi Jaida!”, “How are you, Charlie?”, “Thanks for coming, Bri!”, among other comments like “Whooo hooo!” and “This is fun!”

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After the girls said their hellos, the princesses then all gathered around our kitchen table, and began decorating their aprons and placemats. After they were finished, they began making their lunches, which consisted of fruit kabobs aka: their magic wands (they used cookie cutters for fun hearts and stars shapes) to go along with a sweet fruit dip. They made princess crown sandwiches and strawberry smoothies. They dipped the rims of their cups in pink sprinkles and enjoyed their drinks with fun straws. Claire led the crew by showing them how she can use a big button switch to activate the mixer, blender, and our newest toy, the automatic pourer. This was a big hit.

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After the girls were done making their food, they ate it, we sang to Claire and then enjoyed some cupcakes and ice cream sundaes. This was Claire’s first official “friend” party and it was so darn cute seeing these little girls all dressed up, having fun.

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Claire’s been feeling better, thank goodness! After going through recent tests, we know that Claire is not aspirating when she is eating. (yea!) Her reflux has gotten worse than before, so the doctor put her on a different medication that we are trying. We will know over the next month or so if the medicine is helping. If it isn’t, we’ll most likely look into if she has food allergies or other possible reasons for the GERD.   Her choking at times throughout the day has to do with her having an uncoordinated swallow. At this point, the doctor said there isn’t much we can do about this. This part stinks… I wish I could do something to help her when she starts coughing, choking, followed by her face turning bright red. I can only imagine how uncomfortable this must be for her. I have to say… when she does this, especially in public, it makes for a great conversation starter. It’s happened a few times where strangers will come up to us and ask us if they can do anything to help.

The other quick update I had for you is regarding Claire’s school. After a few meetings this past month, etc. her IEP for the next school year has been signed last week and it is now in place. I feel the discussions we had with the school addressing communication concerns among other areas were beneficial and helpful. We worked together to ultimately come up with a new overall plan. I’m feeling good with the outcome… so, here’s to a great (fingers crossed) upcoming school year for Claire.

It is so hard to believe that my baby is FOUR today!   (and Claire, I told you this…we all know you are so NOT a baby these days… but rather, such a big girl! However, as your mom, I reserve the right to forever call you my baby… okay?   Don’t worry, I told your brothers the very same thing and that I am still allowed to call them my babies too, no matter how old they get. It’s just a mom thing Xoxo)

The following video/ pictures were taken yesterday from her private therapies. With her OT (occupational therapist), she’s working on trying to feed herself again. It’s been a little over a year where she was able to pick up a cheerio. Within the same OT session, they are using construction paper to make a birthday cake.

Finally, in PT (physical therapy), Claire was trying out an adaptive bike. Hopefully this bike will be covered by insurance because it is pretty darn cool! I can see Claire riding outside with her brothers on this bike for years to come. She loved riding this, especially when she was going fast.

So, happy birthday to my sweet little sparkplug… whose smile literally lights up the room wherever she goes.  We love you so much, Claire!

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Thank You!

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Over the past couple of weeks, in order to prepare for the upcoming meetings / appointments that I mentioned in my last post, I had to give myself the specific task of organizing Claire’s medical files.  I’ve been putting this effort off for a little over a year now, but I knew the time had come to get myself back on track and organized so I could easily find whatever documents I may have needed to reference with these appointments.  It took me a few days to go through everything.  But in the process of doing so, I came across old notes from 2011 specifically, that helped me remember where we were when we first started out on this journey.

My very first notes on Rett were taken the next morning after having had received the news of Claire’s confirmed diagnosis.  My sister graciously took all three kids for a few hours, so Sean and I could go to the library to talk in a quiet study room and research.  What is Rett?  What in the world do we do now?  One question most definitely led into the next.  After talking for a while together and looking things up online, Sean stayed in the room to gather his own thoughts, and I started wandering around the library, looking for books to reference on Rett.  As silly as it sounds, I remember feeling totally lost as I scanned the library, looking for a book on Rett.   I found nothing.  However, what happened next really summarizes the type of journey we’ve been on so far with Rett.  There’s that old saying “the apple doesn’t fall from the tree.”  Well, it’s true.  How funny it was, that as I was searching the library looking for a book on Rett, at that very time, there was another woman who was also doing the very exact thing, at this exact location, at the same time.  Who?  My mom.  🙂

It was day one, technically “living with Rett” and it was apparent we weren’t alone, trying to research this new topic.  How ironic was it that I found my mom at the library doing the very same thing as me.

As I organized Claire’s medical files, I also re-read a few binders that I’ve gathered through the years…  these are labeled “support.”  These binders contain hand written letters, printed out emails, prayer cards, and other forms of support that we’ve received so graciously from others since Claire was diagnosed.  I am not kidding you when I tell you I’ve saved everything.   Why?  Because when I feel Rett is taking over in general, and bringing me down, I pull these binders out, look through them, and smile.  Claire has given us (all) an opportunity to see how GOOD people are.  How GOOD people come together during specific times.  How amazing a little girl like her can help teach all of us different things, in different ways.   I’m saying this as not only her mother, but from someone who is the recipient of emails or letters, or Facebook messages, etc…  as a person who (thanks to you) is reminded of this often.

Going through the exercise of organizing Claire’s medical binders and paperwork in general was a task I most definitely ended up enjoying.  As I reflected back on the moment I had with my mom in the library, to going through the support binders, to reviewing her medical records in general, I realized how far we’d come from June 2011 to now.  Both on a personal level but also in general with understanding the world of special needs and Rett specifically.  As I reread the letters, emails, and other items in our support binder, I was reminded again HOW we were able to come so far over the almost three year time span.  The answer?  The amount of prayers, love, support, encouragement, and advice/ help that we’ve received over the almost three years of this journey, from our friends, families, acquaintances, and strangers, has been overwhelmingly present.  And because of this… because of YOU… we are able to keep hoping, keep fighting, keep learning, keep growing… and keep going.

Your prayers are working.  Please see for yourself… These two videos were taken the other day.  🙂  Claire received her 2nd round of botox about a month ago, and that has really helped loosen up her leg muscles.  But to see her move around like this, to see her be able to better coordinate her overall movements with such intent… WOW.

In closing, thank you, thank you, thank you, and THANK YOU!  🙂   🙂

… and, Happy St. Patrick’s Day, from this family to yours!

– Colleen