Thursday, December 20, 2012

Ending the year on a bittersweet note

This past year was marked by exciting progress, some painful realizations, and a new level acceptance.

It's hard to believe Caroline is almost three. In a lot of ways, she's not that different from most girls her age. She loves spending time with her grandmas. She likes watching Sesame Street and Beauty and the Beast. She gets a kick out of dressing up like Princess Belle. She is obsessed with Yo Gabba Gabba. She enjoys being around her friends. She laughs at our silly jokes. She can be goofy. She can be serious. She grins when we tell her we love her. She gets feisty when she doesn't get her way. She is smart. She is sweet. She is patient. She is full of love.

Unlike her peers, Caroline is on a very different path. This path is limiting. Aside from the physical impairments, Caroline's disability also affects how the world perceives and treats her. "Caroline can't speak, but she understands what you say to her." I sound like broken record. Despite polite nods, I sometimes detect skepticism and pity. Assumptions are often made about Caroline's intellect based on what her body is able or unable to do. She is unable to speak. She is unable to use her hands to feed herself, hold her baby dolls, or point to images to communicate. She cannot eat food that has not been pureed. She cannot walk or stand on her own. She has constant involuntary hand movements. She grinds her teeth. She rocks her body. She holds her breath. She still spits up. She needs assistance with every aspect of daily living. The "evidence" is stacked against her. Caroline is often presumed unintelligent until she proves people otherwise.

Sadly, I've come to realize that poor perceptions about Caroline's cognitive skills can be more debilitating than her own physical disability. These perceptions limit her ability to grow, learn, and experience the world like her typical friends. It takes a certain level of investment in time and energy to see beyond Caroline's symptoms. To see that she has the ability to learn and develop new skills. To see that she really does understand what you are saying. To see that even though she struggles to talk, she still has plenty to say. Caroline supposedly has the same rights as the rest of us, but Mike and I often find ourselves needing to advocate for her access to some pretty basic needs. Poor perceptions about Caroline's intellect also chip away at her innocence. Caroline is often talked about as if she's not in the same room. As if she can't understand. Or as if it doesn't matter if she does. She is exposed to discussions and assessments about her condition, progress, and delays on a regular basis. Yes. We do it too. And we're trying our best to watch how we frame our explanations, especially as she gets older and more perceptive. But we can't control what happens when we're not around. A person who cannot communicate tends to become invisible.

Caroline's condition also impacts her ability to fully participate in "regular" childhood experiences. Easter egg hunts, pumpkin picking, trick or treating, decorating the Christmas tree, baking cookies, building sand castles, going to playgrounds, leafing through books, playing with dolls, drawing, dancing, singing... these are all activities Caroline is unable to enjoy without a high level of assistance (we have to manipulate her hands, move her body, and talk for her). We do our best to expose Caroline to a wide range of "typical" experiences, but I can't help but wonder how her inability to fully engage (on her own) affects her overall socio-emotional development. I don't want her world to be small just because she has Rett Syndrome.

Finally, this year has changed my understanding of reaching acceptance. Acceptance is no longer a place free of sorrow, grief, anger, and frustration. In fact, acceptance for me is coming to terms with the fact that those feelings will bubble up from time to time. And that's okay. I can still be at peace with Caroline's diagnosis. I can still experience moments of joy. Which brings me to another point. Having a child with severe disabilities and a shortened life-span has forced me to be truly present. Consequently, happy moments are even sweeter and more appreciated than ever before. I feel love more deeply too.

Caroline's condition brings me a great deal of pain. But I am immensely thankful for the perspective I have now. I feel like I've never seen more clearly.

Overall, I think we had a good year. And I don't take any of it for granted.

---

Last year, we spent a lot of time worrying about what ability/skill Caroline would lose next. This year, we worked on preserving and improving skills. Caroline proved to us that Rett girls can continue to learn and develop even after they hit the Regression stage. Below are videos showing some exciting milestones Caroline achieved around communication, gross motor skills, and hand use.

Communication 
Caroline has lost all of her words except for "da," which she uses exclusively to call Mike. She vocalizes like a young infant.

A major breakthrough came in October. We finally found a method to communicate two precious words that have opened up her world: Yes and No. We are also working on using the Pragmatic Organization Dynamic Display (PODD) communication system. Soon, we will begin trialing eye-gaze computers at home.

Caroline still tries to talk  (December 2012)

Caroline can now make choices using Yes/No (November 2012) 
Note: we use eye-gaze and head movements for Yes/No

Caroline's first time using an eye-gaze computer (October 2012)  


Gross motor skills 
Caroline is unable to stand on her own or initiate steps without cueing and input.

This year, Caroline finally learned to come to a seated position by swinging her legs. She has also recently started using her gait trainer to move towards things and people. The gait trainer offers her a level of independence she's never had.

Caroline is beginning move to where she wants to go (December 2012)

 Caroline learned to sit up by herself. She uses her legs and momentum!  (March 2012)

Hand use
Caroline is unable to use her hands to feed herself, pick up objects, or even pet our dog Kroeber.

This year, Caroline recovered some ability to grab things that are placed in her hand. With the help of her arm braces, she has also regained some control of her arms to manipulate objects. She is sometimes able to reach out and touch our faces.

Caroline helping to "push in" puzzle pieces (October 2012)

Caroline manipulating one of her favorite musical toys (September 2012)

Saturday, November 24, 2012

Thankful

Time really does fly. I'm trying to enjoy and celebrate Caroline every day.

Caroline at 6 weeks

Thanksgiving 2012 

Sunday, November 18, 2012

Emma Claire Reilly Memorial Fund

My dear friend Laura shared the message below the day after Emma was laid to rest. Beth (Emma's mom) is really one of a kind. She's the kind of person whose warmth and openness makes you feel like you've known her forever. She's the kind of person to always put others before herself. I am in awe of her strength and grace. Please consider making a donation in honor of Emma. 

Since our daughter was diagnosed with Rett syndrome almost four years ago, there have been a lot of sad and difficult days. But yesterday was one of the most heartbreaking. Yesterday, I watched my dear friend say good-bye to her daughter Emma, who was only 5 years old and died this week from complications of Rett. Beth may just be the strongest woman I know, and even when her life was crazy, she was always there for anyone else who was struggling. If you know Beth or know Rett syndrome (and even if you don't), please consider making a donation to help the family cover these unexpected funeral costs. (See info below.) And please send out into the universe wishes of strength and peace for Emma's grieving family.

There has been a fund set up at BB&T bank in memory of precious Emma, to assist Beth and Sean with funeral costs and medical bills. If you want to donate, you can make a check payable to "The Emma Claire Reilly Memorial Fund" and mail to the BB&T bank branch in Mt. Airy.

The address is:
BB&T
443 E. Ridgeville Blvd.
Mount Airy, MD 21771

If you would prefer to donate via Paypal instead, please login into your account and send money to the following email address: emmareillymemorialfund@hotmail.com. After denoting your amount, please click the tab "Personal" and click on "Gift." This way, Paypal will not deduct any fees from the money.

June 2012

August 2011

Thursday, November 15, 2012

Emma

I have no words. Many tears have been shed this week.

My dear friend Beth lost her precious daughter Emma to complications from Rett Syndrome.

Emma, you are one of the bravest, most determined people I've ever known. You have touched our lives forever. We love you and miss you so much.



Friday, November 9, 2012

Two life-changing words

Yes. No.
Those two words are changing Caroline's world!

Last December, I wrote about longing to hear Caroline's "voice" (please click here for the post). I remember being heartbroken, but hopeful. We always knew Caroline understood what she heard. Yet unlocking her voice seemed so daunting and overwhelming. Apraxia basically traps Caroline in her own body. It prevents her from forming words and using her hands to point. Her only tool for communication is her eye gaze.

This past month, we experienced a major milestone. Caroline started indicating "yes" and "no." For a while, we were encouraging her to use head movements (please click here for more detail). We soon found that the motor planning involved (not to mention Caroline's involuntary movements!) was adding yet another obstacle to an already challenging task. She would often get frustrated. It was also difficult for us to distinguish between a "real" head tilt and an involuntary movement. We decided to rely on one of her strengths instead: her eye gaze.

Caroline's newfound ability to make choices has marked a real turning point in our lives. She seems less frustrated. She has higher expectations! She gets excited when she's able to tell us what she needs...and she yells at us when we can't figure it out! Ideally, we should aim to give Caroline two choices with "something else" as a third choice. This method allows Caroline to truly express her needs. It also lays the foundation needed for her to use the PODD communication system expressively. But reality isn't always ideal. Sometimes, we just ask her to chose directly between two items in front of her. This method is much more limiting, as it prevents her from expressing a need that may be completely different than the choices presented to her. But I may only have two snacks available. Or I may not want to offer "rocking" as option because she's just had something to eat and may end up throwing up (a common problem for us). We're doing what we can. And Caroline now gets to enjoy choosing activities, snacks, videos, toys, and even who she wants to hang out with!

Our next goal is to help Caroline tell us what's wrong when she's upset. When she's crying, she obviously has very little patience for using "yes" and "no." And yet these are the times when I most need her to be able to communicate her needs. I feel so helpless. Eventually, another big goal is to have her communicate in a more autonomous way. I'd love for her to tell me what's on her mind, as opposed to have me guide her into a specific topic. This is where PODD comes in. We hope Caroline will start using this communication system expressively soon.

This development was the result of a team effort. I want to thank Megan (Caroline's speech and language pathologist), Linda Burkhart, her school teacher and speech therapist, and everybody who believes in her potential. 

Caroline picking out a snack. 

Caroline choosing an activity. 

This is our home-made eye gaze board. Right now, it enables Caroline to use her eyes to communicate "yes," "no," and "I want."  The board is also training Caroline to eventually apply the same method of communication to an eye-gaze computer. 

Outside our home, we use the "yes" and "no" switches we made. We hold them up at a similar distance as the images on the eye gaze board.

We use laminated pictures to facilitate choice-making. Have I mentioned how much I love laminating? 

We are still in the modeling phase of PODD . We're currently reinforcing the meaning of the images in the first few pages of the book by showing them to Caroline when we use key words (we plan on gradually shifting to only using the book in the next few weeks).  

Here's a video of Caroline and I chatting and playing. (warning: this video is almost 8 minutes long!)

Wednesday, November 7, 2012

Caroline loves Yo Gabba Gabba

Yo Gabba Gabba videos make Caroline laugh. She seems especially tickled by Biz Markie's beatboxing. She cracks up every single time.


Monday, November 5, 2012

Girls having fun

Caroline had a playdate with Daisy this past weekend. They dressed up in their costumes and watched Yo Gabba Gabba videos together. For me, the best part was watching Caroline having fun with Daisy without needing my hand-over-hand assistance.

My friend Sherry (Daisy's mom) is just so good at finding activities the kids can all enjoy together. She's also great at answering questions and always pointing out the similarities. Please click here for a great post Sherry wrote on how to talk to young children about Caroline.

When I watch scenarios like the one pictured below, my mind often races to the future. Will Caroline have friends in 5 years? In 10 years? I want to think "yes, of course she will!" But the truth is that I just don't know. I then have to stop myself from thinking too far ahead before I ruin a perfectly nice moment...and just focus on what's in front of me right now.  More often than not, it works.


Thursday, November 1, 2012

"How are things going?"

I never really know how to answer that question without burdening people with what is essentially a conversation stopper.

The truth? Some things get easier. Or maybe we just get used to dealing with them. Other things seem to get tougher as Caroline gets older. Another truth? The sorrow never fully goes away. It comes in waves. I've just learned to tuck those feelings away where nobody can see them. I especially never want Caroline to sense that her condition makes us sad.

I'm not the same person I was before I became acquainted with Rett Syndrome. I don't have the same dreams. I don't have the same patience or energy. My perspective and outlook have certainly changed, perhaps for the better and perhaps for the worse too. Strangely though, I like the "new" me. I'm more honest, more authentic ...and so are my relationships.

We want to give Caroline the very best life. At the same time, we're coping with a reality that is emotionally devastating and physically exhausting. And we're up against this reality every single day. There's no escaping it. This is not just a "phase" in our lives. It is our life. There are a lot of complex pieces to juggle. There are stresses most parents will never have to deal with or think about. A painful example is my constant awareness of Caroline's shortened lifespan. I try to use that information to celebrate her life, but I still think it's unfair and unnatural to know that I will outlive my child.

Mike and I often feel like we are struggling to just make it through this life in one piece at the end. I hate admitting that.

Given the challenges we continually face on a regular basis, we do our best to avoid additional stress that could easily tip us over the edge. We often end up having to cancel plans when Caroline catches even the slightest cold. Coughing often results in vomiting because Caroline has acid reflux, sensory issues, and weak muscles. We've had enough experience with messy vomiting sessions to want to avoid them outside our home. Trips are tough too. After a few taxing experiences this past year, we've made the decision to avoid long car rides and short overnight trips. Being in a car for a few hours exacerbates Caroline's involuntary movements. These movements become more frequent and spastic. They also continue into the night. They keep her from falling and staying asleep. A sleepless night, in turn, messes with our own ability to recover from an already exhausting week.

What keeps us going? Mike and I have each other's backs. Humor is a huge part of our lives too. We also rely on our parents a lot. We have a great support system. Nursing assistance is absolutely crucial. Connecting to other Rett families is a lifeline. Working out feels like therapy. My career is also important to me--it's one of the few links I still have to my "old" self. 

Despite Rett Syndrome and all that it has stolen from us, when I watch Mike and Caroline, I still feel like I hit the jackpot. The good moments definitely trump the difficult ones.


Wednesday, October 31, 2012

Update on potty training

Since the last time I posted about Caroline's progress with potty training, she's had one single accident with with "number two" in her diaper (when she got diarrhea once in September). I know this is a strange topic to blog about, but Caroline has Rett Syndrome. This is a HUGE deal!

We are still shocked at how quickly Caroline learned to use the toilet. As soon as she turned 2 1/2, we started training her and that was it. She figured it out in less than a day. Now, she lets us know by rubbing her nose and confirming with her yes/no eye-gaze board. She also knows to "hold it" until we can get her to the nearest bathroom (she actually crosses her legs with quite the force as we rush her to the toilet!). Her school teacher and home nurse also report that she always uses the toilet for bowel movements. Everybody around her is incredibly diligent about picking up the signals. Reaching this goal was a team effort with Caroline leading the charge!

Mike thinks Caroline's success with potty training is due to her eagerness to express understanding of our expectations.

Our girls are smart. They just need us to believe in them.

 

Tuesday, October 30, 2012

My princess Caroline

Lately, I've been surprised by some of the "typical" stuff that bubbles up in our "non-typical" life. Apparently, Caroline loves dressing up as a princess.

Just to be clear, I'm not pro or against the princess phase. For me, it's just a matter of not knowing what kids are into (at any age!). Caroline is our only child. And we had never really been around young kids before Caroline. So naturally, when it came to picking music and shows for her, we chose what we knew and liked too. This is why Caroline has been exposed to a lot of old school Sesame Street.

We ended up getting the Beauty and the Beast movie because it has a lot of great songs (a must for Caroline to sit through anything!). It was also among the few Disney movies currently out of the vault. To our amazement, Caroline was able to enjoy the movie in its entirety. This is quite an accomplishment considering the length. Caroline has to work extra hard to concentrate and focus. She totally gets into the viewing experience too. She yells when there's a lot of action and she laughs at some of the funny parts. She also gets quiet during the more "serious" parts.

I never imagined Caroline would enjoy dressing up like a princess until the Belle costume caught her attention at Target. I told her "this is the same dress Belle wears in the Beauty and the Beast movie you like so much!" We started walking away from the dress, but my mom and I looked at each other and something told me to just buy it.

We were all surprised by how much she enjoyed wearing the dress. She smiled the entire time she had it on. She cried when we finally took it off.

Caroline loved being Belle. 





Caroline also wore a little lady bug costume. She didn't seem to enjoy it as much. 


Wednesday, October 17, 2012

Caroline's feisty side

I thought we had ducked the "terrible twos" phase with Caroline. Well...it seems we are getting some light version of this developmental stage.

Caroline has rarely cried or fussed, even during the worst of her regression last year. But lately, a little bit of feistiness is bubbling up here and there. She yells at us (especially me!) when we can't figure out what she's trying to tell us (like when we put her on the toilet when she needs something completely different). She breaks down in tears when we end an activity she's enjoying (like when we try to keep her from rocking after she's eaten). She does something with even more intensity when we ask her to stop (like when she hits her head really hard against the chair and then watches for our reaction with a huge smirk). Caroline is definitely trying to make it clear to us that she wants some independence. She gets frustrated when she realizes she can't communicate with us. And like most toddlers her age, she gets upset when things don't go her way.

I can't complain though. She's still our sweet Caroline. We just hope this is simply Caroline asserting herself and not some Rett-related thing that's about to get worse. Our gut instinct (wishful thinking?) tells us that we should find some comfort in seeing yet another sign that Caroline is just like most kids her age.

Pictures from this week
 

Tuesday, October 9, 2012

First time trying an eye-gaze computer

This past week has felt like some kind of miracle to me. We had another major milestone during Caroline's first trial with an eye-gaze computer. She figured out how to use the computer in less than 5 minutes. Mike and I were in awe...just completely amazed. 

Caroline is working with a speech-language pathologist (SLP) on alternative and augmentative communication therapy. I am so thankful that Caroline is working with someone like Megan. She is compassionate, dedicated, and just a pro at what she does. I also appreciate that she immediately got that Caroline was "in there" despite her severe physical impairments. I am well-aware that not everybody believes in our girls' cognitive ability (click here for recent research). My heart breaks for girls who are not surrounded by teachers, therapists, and doctors who believe in them. Caroline must sense that Megan sees beyond her disability. She seems to consistently give Megan her best!

We are in the process of trying out difference eye-gaze computers until we find the right one for Caroline. We started with the DynaVox. I will try and post videos of our experience with other companies as we continue our search.   

I can't wait to hear what Caroline has to say when she's "talking" spontaneously! 

For more information about Caroline's awesome speech therapy place, please visit their website at http://washingtonspeech.com 

Video of Caroline using the eye-gaze computer for the first time. She quickly figured out that she could communicate that she wanted a toy by looking at the image of the toy! It was BEYOND exciting to watch! 

 

Sunday, October 7, 2012

Communication breakthrough!

BIG NEWS!!! Something wonderful happened this weekend. Caroline is beginning to express "yes" and "no" with switches and cards!

While working with Linda Burkhart on the PODD communication system, Caroline made her own choices for the first time! And she was so happy and proud of herself. She had this look on her face like "you finally understand what I'm trying to say!"

We've been modeling the PODD system (albeit inconsistently) since our July PODD training with Linda and Gayle Porter. We've also been working with Caroline on the head movements for "yes" and "no." We just didn't realize that she actually understood the meaning of these abstract concepts. For "yes," she tilts her chin down towards the "yes" switch (or green "happy face" card since we use both--see pictures below). For "no," she turns to her LEFT side towards the "no" switch. (note: Rett Syndrome causes Caroline to have involuntary movements, including shaking her head from side to side. This movement looks like "no," which can be confusing. Hence, her "no" is just one turn to her left side towards the "no" card.)

We feel so blessed to have worked with Linda. Not only is she an Augmentative Communication Specialist ROCK STAR, but she also "gets" our girls. She believes in them and knows their true cognitive capability. Caroline's ability to express "yes" and "no" will change her entire world (and ours too!).

For more information on Linda, please visit http://www.lburkhart.com/ . Also, please click here for a link to a short document explaining how apraxia affects communications in girls with Rett Syndrome.

A video of Caroline making choices (for the first time!) while eating. It's important to give her a least 3 choices and also "none of these" as the 4th choice. (This video was taken by Linda)



Here's Caroline "babbling" for the first time (with PODD). She eventually says that she wants more apple sauce! (This video was taken by Linda)
 

Caroline and Linda Burkhart (Pictures by Soojung!)


Our "yes" and "no" switches (Linda taught me how to put them together)

We also use our "yes" and "no" face cards. The point is to get Caroline to learn the movements to express these choices. 

My own personal accomplishment this weekend was running a 10K in 58:32 (9:26/mile). I ran with my Rett mom friends Doris and Soojung!

Wednesday, October 3, 2012

Modeling the PODD communication system

The Pragmatic Organization Dynamic Display (PODD) communication system enables individuals with complex communication needs to have an autonomous voice. (to read more about how we're introducing this system to Caroline, please see click here)

We're still in the "modeling stage." We hope that Caroline will eventually use this system expressively. At this point, Mike and I are each using PODD twice a day for a few minutes. Caroline also takes her PODD book to school for her teacher and therapists to communicate with her.  

Here's a video of me using the PODD book to talk to Caroline (DISCLAIMER: I may be messing up to the point where what I am doing may not even be considered PODD anymore!) 



Sunday, September 30, 2012

Loss of purposeful hand use

In the spirit of Rett Syndrome awareness month, I'll be posting current videos of Caroline dealing with the various aspects of the disorder. Some skills have improved while others have further deteriorated. But she's still the same determined little girl!

A hallmark of Rett Syndrome is the repetitive hand movements and loss of purposeful hand use. I've posted many times about Caroline's loss of hand skills (to see previous posts, please click on the "Hands" link below this post). Caroline uses an arm brace on her right arm to keep her hands away from her mouth and promote intentional hand use by disrupting involuntary movements.

Caroline's purposeful hand use has improved a bit over the last year. These days, Caroline can hold a small light object in her left hand for up to 2 seconds. She can also reach out and touch our faces. She attempts to give us hugs by "patting" our backs when we hold her. She can "swat" at some of her musical cause/effect toys. I'm grateful for these improvements, but I can't deny the devastating impact of the loss of this skill. Caroline can't explore the world on her own. She can't point to objects or images to communicate with us. She has to rely on us for help with basic skills like eating, dressing, toileting, and even playing with her dolls. But we do our best to "be Caroline's hands" for her.

We are her hands and she is our heart.

Caroline's involuntary hand movements are constant while she's awake

Caroline playing with one of her favorite toys

Monday, September 17, 2012

Finding a communication device for Caroline

Unlocking Caroline's ability to express herself is a priority. The loss of Caroline's voice has been one of the biggest sources of sadness and frustration for us. After a long and stressful search, we are finally working with a speech and language pathologist (SLP) who's conducting an augmentative and alternative communication (AAC) evaluation to explore an eye gaze communication system for Caroline.

Caroline is smart. Recent research shows that the cognitive ability of girls and women with Rett Syndrome has been underestimated for a long time. Nobody has ever doubted Caroline's ability to understand what she sees and hears. It depresses me that she has no way to communicate with us. She can't tell us if something hurts or if she's thirsty. She can't tell us if she wants to listen to music or sit in another part of the house. She is unable to control her arms (let alone her hands and fingers) so she can't point to objects or pictures to express basic needs. All we have to guide us are her vocalizations, facial expressions, and eye gaze.

We are still modeling the PODD system for communication, but it may take some time before Caroline is able to use it expressively. The good news is that she seems very interested and focused when we use it. She just can't say anything back to us yet. Our hope is to incorporate the PODD system into whatever eye gaze technology Caroline ends up using.

Based on initial AAC assessments, the speech and language pathologist determined that Caroline is the perfect candidate for an eye gaze computer system. Before we can start "trialing" the different devices, we have to work on getting Caroline to more effectively use her eye gaze to communicate her needs and to make choices. During today's appointment, the SLP successfully engaged Caroline in an exercise to get her to look at an exact image of a toy she enjoyed to request that specific toy (pictured below). This seemingly simple exercise was incredibly challenging for Caroline. Her whole body squirmed as she struggled to concentrate on focusing her gaze on the picture of the toy.

After the appointment, I drove straight to the craft store to get materials to make our own eye gaze board. When I got home, I took pictures of five objects representing Caroline's favorite activities. Our goal over the next couple of weeks is to reinforce the cause/effect of looking at a picture to express a need.

Everybody has something they daydream about every single day. I dream that I will someday hear Caroline's "voice."

Caroline looking at a picture of the toy to "request" it

Caroline enjoying the toy


Materials for Caroline's eye gaze board (Mike's project this week!) 

Pictures I took of objects representing Caroline's favorite activities (the Sesame Street one is an actual snapshot of the TV screen while Caroline was watching the Silly Songs DVD!)

Sunday, September 16, 2012

A visit to Clemyjontri Park

Caroline met Santi for a little playdate at Clemyjontri Park this morning. We love this park because it is tailored for children of ALL abilities! The park even has a swing that allows children with special needs to use it without having to transfer from their wheelchairs. How awesome is that?

Caroline was able to enjoy the park like the rest of the kids there! She tried the swings, the carousel, the slides, and other fun equipment. I even got her to bear weight on her legs without any complaints. She was clearly distracted by all the fun she was having.  

Caroline and Santi were so cute together. Santi is just such a smart and sensitive little boy. I love their sweet friendship.










Sunday, September 9, 2012

Breath holding

This morning, Caroline had several scary episodes of breath holding.

Caroline has experienced some abnormal breathing episodes for a while, but those patterns were so subtle that only a Rett specialist noticed them. The incident this morning was a first. Caroline held her breath for longer periods and with more intensity. She had a panicked and scared look on her face each time it happened. I tried to get her breathe again by blowing air on her face and kissing her cheeks. It worried me that she was unable to quickly "snap out of it" on her own. Mike confirmed he's observed Caroline holding her breath with more frequency lately.

I turned to my Rett mom friends for advice. I was surprised to hear how common it is for Rett girls (especially the younger ones) to hold their breath. Some girls turn blue and even faint from doing it, though they often eventually learn to overcome it.

Caroline's condition has been relatively stable these last few months. I think we got too comfortable. I am well-aware of all the sad possibilities and progression of Rett Syndrome, but I can't live thinking about what may or may not come next. I can only use that information to make the best of what I have today.

On a positive note, it's obvious to us that Caroline loves her new school! I still can't get over how happy and willing she was to get on the school bus by herself and start this new experience. She's so open, trusting, and brave.

We stopped by the playground during our long walk today. 


Thursday, September 6, 2012

First official day of school!

Caroline had a wonderful first day of school!! She came home with such a big smile. When I asked her how her day was, she giggled and vocalized in delight. I so wish I could understand what she was trying to tell me. Her teacher confirmed that Caroline had a great time!

Caroline has always thrived in a class-based setting. She LOVES learning and being around children her age. She also easily adapts to new environments. Our main concern was the thought of putting her on a school bus at the tender age of two, but the bus driver and attendants were so incredibly gentle and kind (and Caroline seemed to love the experience of riding the bus!). Mike and I are excited for Caroline as she starts this first school year. We feel that we really lucked out with the school team. 

The day was almost overshadowed by an incident that happened when Caroline was picked up by the school bus. What was already an emotional event was made worse by an angry lady who repeatedly honked her horn behind the bus while Caroline was being safely secured inside. She even attempted to drive around it a few times, but realized she didn't have enough room. I walked up to her car and said "my child is in a wheelchair" but she refused to acknowledge me. I could not comprehend how someone could be so cruel, especially towards a disabled child. I'm trying to put this incident behind and hope that it does not happen again.

Regardless, I took pictures and videos to share!

Caroline waiting for the school bus

 Video of Caroline being lifted onto the bus for the first time. A bittersweet moment.

Caroline coming back from school! (look at that smile!)
 

 Caroline had an awesome first day of preschool. She was so happy! 

UPDATE: Caroline's thoughtful teacher (pictured below) sent us pictures that made our day!