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