It's all becoming too real...

I'm not even going to try to sugar coat my thoughts today. As parents there are moments that get permanently etched in our memories. Some of those moments are times when we get to experience some of our children's major milestones. Who among us doesn't remember the time our child took a first step, or said the word "Mama"? When you are the parent of a child with challenges, there are also some incredibly painful moments that stay with you forever, no matter how hard you try to forget them. Never mind having to watch all of the physical pain - I'm talking about the emotional pain which can be even worse. For me there are a few of those instances that come to mind...

1.      The first happened when Kaitlyn was 3 years old. I had just put her baby brother down for a nap. When I came down the stairs, I found her curled up on the kitchen floor hysterically crying. When I asked her what was wrong, she looked me square in the eye and said "I can't walk"...

2.      The second was when she was 4 and we were driving through town on a really pretty spring afternoon. Out of the blue she said that she wished she could walk and run.

3.      The last one was about 6 months ago when she told me that the only thing she wanted to ask Santa for was "to make me a regular kid".

Today I experienced one more of those gut-wrenching conversations with Kaitlyn. It is clear that this whole CP thing is becoming very real to her. The two of us were just chatting about a few things, when she asked me what it feels like to not have cerebral palsy. She said that she wishes she could be like everyone in the world who doesn't have cerebral palsy...like Connor. She said that it's really, really hard to fall all of the time. She has been complaining that her knees hurt quite a bit lately, and I noticed that she's got some nasty bruises. Imagine what it would feel like to fall on your knees several times a day on wood floors, tile, and pavement?

She went on to say that she knows that she's going to have this for her whole life. I asked her if that made her sad, and she said no, it makes her angry and frustrated. Who can blame her? How on earth can an 8-year old begin to be expected to wrap her head around the gravity of dealing with this forever? How as her mom can I be completely honest with her without breaking her heart?

This was just one of those days when I wish I could turn the clock back to when Kaitlyn was little. I loved those days when Kaitlyn didn't know that she was any different than anyone else in the world. Her world was truly all rainbows and fairies and it was such a happy time. I guess that's probably true though for any child, not just one with challenges. Since we can't turn back the hands of time, I think I'll continue to relish in the happy moments, and deal with the difficult ones as they come. That is in the end the job of every parent, isn't it?

Time to take a minute to enjoy the good things in life...

Okay, I'll be the first to admit that things have been tough since July for Kaitlyn.  Between her mobility challenges, this nasty acid reflux, and a week-long fight with croup, it's sometimes hard to stop and smell the roses. 

Luckily Kaitlyn is really good about enjoying all of the happy things life has to offer.  She is such a shining example of someone who always looks at the bright side of life. She loves life and can find happiness in simplest things.  Here are a few pictures of her just living life - a happy life - every single day.  Honestly, seeing her smile truly makes me smile. 

Here is Kaitlyn's awesome cake.  She baked it from scratch and decorated it herself!

 

This was "Red Carpet Day" at school. Any excuse to wear a feather boa... 

 

One of the best days ever - Kaitlyn got to play the last 5 minutes of Connor's soccer game.  She was beyond excited!  She really couldn't stop smiling, and I couldn't stop crying! 

 

Showing a little team spirit... 

 

Pirate day in class.... 

 

Thank you sweet Kaitlyn for reminding me that life is meant to be lived with laughter, happiness, and fun no matter what challenges each day might bring.

Sometimes, life is just plain tough...

I know - it's been two months since I've posted.  I remember there was a time when I was posting often with all kinds of news.  I've always had three goals for the this blog...

1.  Share Kaitlyn's story of navigating through life while managing the challenges of living with cerebral palsy.
2  Inspire others by showcasing how Kaitlyn's positive attitude and fierce determination help her to overcome many of life's challenges.
3.  Be completely honest. 

The problem I'm having lately is reconciling that currently there seem to be tons of challenges, but very few stories of overcoming anything.  If I want to remain completely honest, then I know the tone of my writing will be sad, frustrated, and maybe even a little defeated.  Like Kaitlyn, I'm someone who tends to think positively and can usually find a silver lining in even the most dire situations.  In the interest of full disclosure, I have to say that these days I'm feeling less like that person, and more like a bitter, ticked-off, really sad mom.  I look at her and my heart breaks.  I'm tired of her having to live with this condition, and I hate the fact that I can't fix it.  So those of you who like to read this blog to be lifted up, you may want to stop right here.

Things have been tough lately.  However, one huge upside is that Kaitlyn responded really well to the injections she got over the summer.  She is much looser, and she is falling much less than she was in the spring/early summer.  She'll need to have the injections repeated in early 2013, but I'm encouraged to see how well she's doing. 

As for the tough stuff, I almost don't know where to begin.  First, the doctors are talking to us an awful lot about what the next few years may have in store for Kaitlyn.  She's 8, and evidently the pre-adolescent years (9-12) can be quite difficult on kids with cerebral palsy.  If we thought that ages of 7&8 were hard on her (which they were), the next few years will most likely be even worse.  The growth that she'll experience will probably result in increased muscle tightness.  With her muscles being so tight, they will not be able to stretch with her growth rate.  That in turn may cause her bones to twist and turn because her muscles can't keep up with the bone growth.  If this happens, she will need a miserable surgery to break and reposition the bones that get twisted.

Within the last year she was diagnosed with scoliosis.  What was originally a "mild" 20% curvature of her spine has quickly progressed to a "concern".  If it continues in the direction it's going, she'll need to wear a back brace to straighten/support her spine.  So this poor kid who already uses a walker, walks differently than everyone else, falls in front of her friends all day long, is the only kid at school to wear a seat belt on the bus, sit in a special chair in class, sit in a different special chair in the cafeteria, and wear leg braces will now have the distinction of wearing a big old back brace over which fitting all of her cute clothes will be virtually impossible.  That's just the emotional component of this...never mind the pain and long-term impact this will have on her physically.

Lastly, Kaitlyn is suffering from SEVERE acid reflux.  She's had an endoscopy, and has been on 4 different medications, but nothing seems to be working.  It's impacting her whole life.  It's really hard to get through a school day with a stomach ache and acid reflux.  She missed out on amusement park rides this summer because her stomach hurt too much.  Just today she had to leave a movie half way through  because her reflux was so bad :(  It's just plain miserable to live with this.  The fact that she now has to deal with this on top of everything else just seems cruel. 

So that's it.  There's the update on Kaitlyn.  At the very least after reading this I hope you can understand why I'm having such a hard time.  I just don't understand why the sweetest, kindest, most loving person I know has been saddled with this affliction.  I guess sometimes life just isn't fair.  What's most amazing to me is that Kaitlyn manages to keep smiling, even through the toughest times.  Hopefully I can learn to smile too by watching her example...

Summertime...

"Summertime, and the livin' is easy" - George Gershwin.   

I've always loved summer.  Living in New England, there is not a day too hot and humid for me.  I know with certainty that in the blink of an eye the long, warm, easy days of summer will be behind us, and the cold fall winds will begin to blow. 

I always envisioned my children's summertime memories to be much like mine...days filled running around with their friends, swimming in the pool, running to the passing ice cream truck, and spending as much time on the beach as possible. 

For Connor, summer is turning out to be all that and more.  He is having the time of his life, running around with his buddies, going to birthday parties, perfecting his dodge ball game at camp, and working on his cannon ball.   Life is good for Connor.

For Kaitlyn, this summer has had plenty of good times, and quite a few challenges as well.  Like me, she loves the summer weather.  She is happiest outside, reading a book, swimming in the pool, or swinging on her swing set.  However, some of the things she wants to do are proving to be quite difficult for her.

This past year she went through a big growth spurt, growing over 4".  The downside to that is that her tight muscles did not have the ability to keep up with the rate at which her bones grew.  The tight muscles pulling on her bones caused several of her bones to twist.  Her mobility has been negatively impacted, and there is a chance that she'll need a difficult surgery that involves breaking her bones and rotating them back to the proper position.  A few weeks ago Kaitlyn had a series of injections into the muscles and nerves of her hips, hamstrings, quads and calves in order to decrease some of the tightness in her legs.  The goal of the injections is to loosen her muscles enough to allow her bones to grow without being twisted over this next year, and perhaps help in preventing the need for surgery.  By the way, I have no idea why she was so happy the day of her injections after not eating since the day before, getting up at 5:00 a.m., and sitting around a hospital for hours, but take a look for yourself...

While having increased flexibility is certainly helpful when it comes to growth, it is decidedly problematic for mobility.  As it turns out Kaitlyn was using her high muscle tone to help with her ambulation.  With the loss of that tone, we are seeing just how weak Kaitlyn's muscles are.  She has gone from walking independently in most situations, to struggling to get from the living room to the dinner table without falling. 

Last week we took our annual vacation to the beach.  There is a spot way down from where we sit on the beach that we like to walk to during low tide to search for crabs, snails and starfish.  Last year Kaitlyn was able to walk nearly the entire distance on her own.  This year she was only able to take a few steps before falling.  While she tried to get up and keep going time and time again, it was clear that this walk wasn't going to be possible for her this year.  Luckily she was able to hitch a ride with Dad...

That is just one example of the challenges Kaitlyn has faced since the injections.  There is no camp for her this summer.  There is no running around the yard with her friends.  There is no riding her bike with the neighborhood kids.  There is living with pain.  There is dealing with the frustration that her body won't do what she wants it to do.  There are physical therapy visits.  There are daily stretching and exercise sessions at home.  Sigh.

Chris and I are doing everything we can to make this summer fun for Kaitlyn.  She and I have a few hours alone each day while Connor is at camp.  We spend that time shopping, baking, doing art projects, or doing just about anything else she asks me to. She has been swimming just about every single day, which she loves.  Luckily being in the water is easy for her, and is also great exercise.  She has some fantastic friends with incredibly supportive moms who make sure that she still gets to hang out and have some girl time.  Having said all of that there isn't a day that goes by that I don't wish that things were easy for her.  I wish she could run and ring a friends doorbell on her own.  I wish she could hop on her bike and ride away with her brother.  I wish I could sign her up for all of the camps she wanted to go to this summer.  Honestly I just wish she could walk the two steps from her walker to the car door at the grocery store parking lot without falling and smacking her face on the concrete, but she can't. 

Why is it that even the medical interventions that are meant to help her seem to cause even more challenges for Kaitlyn???  I really can't answer that, but I can tell you this.  Kaitlyn has remained incredibly positive through all of this.  If she's frustrated with the loss of mobility, she's not showing it.  She's using her crutches and walker when she can, and asking Chris and I for help when she needs it.  She's finding happiness in all the things she loves including reading, swimming, and spending time with her friends and family.   She doesn't spend any time feeling sorry for herself.  She doesn't complain.  She doesn't dwell on the pain or the difficulty.  She is positive.  She is happy.  She is amazing.

Hopefully by the time I get around to writing the next post, Kaitlyn's mobility will have improved.  She'll be getting ready to start a new school year, and we are hopeful that by then she'll be able to walk more independently.  Until then I have no doubt that she'll keep smiling, giving me all of the motivation I need to keep smiling too. 

Here are a couple of pictures from our vacation.  I'm sure you can see by the look on her face that no matter what challenges she may be facing in a given day, there is always something to smile about...

 

  

Independence

Independence. Defined as "Freedom from the control, influence, support, aid, or the like, of others".

Well, independence certainly sounds like something we should all strive for, don't you think? As parents we all do our best to start teaching our kids to be independent at a young age, so that they don't grow up to be completely inept at developing relationships or living in the "real world" when they leave our houses someday. The goal of independence is the reason we teach our kids to use utensils to eat, dress themselves, and brush their own teeth when they're toddlers. It's something that is expected of us as parents, and something that if we didn't do would certainly lead to ridicule and scorn from the rest of the world.

While promoting independence sounds good in theory, it's not always so easy in practice. You see when you have a child with cerebral palsy, allowing independence is both necessary and incredibly difficult. I have said this a million times...Kaitlyn is fiercely independent. She has been that way literally since the day she was born. She's a fighter, she's tough, and she is incredibly driven. She wants to be as independent as any other 8 year old out there, and I want that for her. I have spoken to older kids and young adults with cerebral palsy, and every one of them has told me the same thing..."Don't treat Kaitlyn any differently than any other kid. Don't do things for her. She has to learn to do things for herself. Don't coddle her." I have heard this from both sides - kids whose parents encouraged independence, and kids whose parents did way too much for them. They all agree that allowing Kaitlyn to do things on her own to the extent that I would for any other child her age is imperative.

I have taken this to heart, and Chris and I agree that fostering independence is the best thing we can do for Kaitlyn. To squelch her independent nature would undoubtedly do more harm than good. Having said all of that, I'm finding it more and more difficult to stick to the plan. What kind of mother would stand by and watch her child fall (literally fall) sometimes a dozen times a day and not help her up? What kind of mother would be shopping in Target, allow her child to stumble, crashing first to her knees then toppling over onto her hip/shoulder/temple, and not lend a hand to help her up? What type of mother would see her child get knocked to the ground while playing soccer with her friends and not even ask if she's ok? Me. That's what mother would do all of that.

You see Chris, Kaitlyn and I all know a few important things:

1. She's going to fall. A lot.
2. She HATES when people make a big deal about it.
3. Unless she's really, truly, hurt, she wants no mention of the fall. She wants to get up ON HER OWN, and move on.

While I know that allowing her to "take her lumps" is the best thing for her, some days are just harder than others. I really could do without the glares from the people in Target who look on in disgust as I stand by and watch Kaitlyn painstakingly roll from her side to her belly, get up on all fours, move her hands from her feet to her knees, and finally walk her hands up her legs as she gets to an upright position. I've actually gotten pretty good about not letting what a complete stranger thinks bother me. What hasn't gotten one ounce easier is fighting my instinct to jump in and help her whenever I can. What all of the people watching these situations unfold don't know is that while I can fire back a steely glare right at any one of them, on the inside my heart is breaking, each and every time.

Recently Kaitlyn had her annual dance recital. This is by far the single most anticipated day of the year for her. She not only loves to dance, but her favorite place in the world to be is on stage. She works hard all year to learn her recital dance, and bounds onto the stage with all of the enthusiasm in the world. This year her tap class did a dance set to "Anchors Away". They were so cute coming onto the stage all decked out in their sailor costumes. As the dance started, I couldn't help but notice that Kaitlyn was smiling from ear to ear. I'm always amazed at her bravery. She has admitted that being the only dancer with a walker is hard, but she gets up there and it gives is her all.

About half way through the dance, Kaitlyn let go of her walker to perform a little spin. When she got back to her starting position, she reached out and grabbed one side of her walker, but missed with her other hand. She fell to the floor, and there was an immediate audible gasp from the crowd. As much as I wanted to run up and help her up, I sat still, held my breath, and hoped for the best. While another child might burst into tears, or run off the stage, Kaitlyn did just the opposite. She pulled herself back up, and managed to finish the dance with a smile on her face. My heart broke for her when it happened, but I couldn't have been more proud of how she handled it. Here's a short clip from her dance. You'll see her smiling face dancing her little heart out. You won't see her falling - that's the least important part of her performance...



On our way out of the auditorium that afternoon Kaitlyn was showered with compliments from complete strangers, kids and adults alike telling her what a great job she did. In the car on the way home Kaitlyn asked me if everyone was upset that she fell. I told her that nobody cared that she fell, but everybody cared that she got up. It's amazing to me that an 8 year old girl can can teach such an important lesson to the hundreds of people watching her that afternoon.

"The greatest accomplishment is not in never falling, but in rising again after you fall. " - Vince Lombardi

If only I could wave my magic wand and make it all go away...

Today was just one of those days. I think that every mother probably has a day like this - a day that just absolutely breaks your heart. With Kaitlyn I've had more of these days than I care to count.

I try to prepare myself for the fact that Kaitlyn is growing up, and the fact is that at 8 years old she is becoming increasingly aware that not only does she have Cerebral Palsy, but that dealing with this condition is exhausting, frustrating, painful, and annoying. However I'm still taken off guard sometimes when she blurts out her feelings about all of this seemingly out of the blue, like what happened today.

As we were in the car driving home from dance class, we were chit-chatting about the usual stuff...what's for dinner, if she has to go to Connor's soccer practice, and the fact that she is so happy that she has no homework this week. Then after a brief silence Kaitlyn told me that she knows what she's going to wish for this year from Santa. Knowing that Kaitlyn begins forming her Christmas wish list on December 26th, I wasn't at all surprised to hear this. In my mind I figured she'd ask for some Littlest Pet Shop animals, some new clothes from Justice, and an IPod Touch. Instead when I asked her what it was she was going to wish for, she answered "To be like a regular kid".

She then got all choked up, and while doing her best to hold back tears she went on to tell me that it's really hard to have Cerebral Palsy. She said she's been dealing with this for 8 years, and that's a really, really long time. She said that she's tired of falling and getting hurt, and that nobody understands how hard her life is. She's frustrated that easy things like walking are hard for her, and that's not fair. She also asked me if she was going to have to deal with this for her whole life.

Talk about heart wrenching.

I think that this has been building up over the last week. She's taken a couple of hard falls, including one where she fell on the concrete around a friend's pool while she was just trying to carry her sno cone to a seat. I can't really imagine a sadder image than Kaitlyn lying face first on the concrete surrounded by her spilled blue sno cone :(

When she told me this in the car, I did my best in the moment to acknowledge that I know how tough it is for her, and that I understand her feelings. Later when I got home from Connor's soccer practice I sat in her room with her and had a long talk about all of this, which I hope made her feel a little bit better. However, there really is nothing I can say that is truly going to make her life easier. The truth is that she is right. Having Cerebral Palsy is really hard. Falling and scraping her knees, elbows, and head all of the time is awful. Being 8 years old and unable to ride a bike, play on a soccer team, or jump in a bounce house is truly sad. Knowing that she will have to deal with this for the rest of her life is just plain unfair.

Having said all of that I truly do acknowledge that I need to have some perspective. I know that there are millions of children facing much more dire and challenging situations than Kaitlyn. I count my blessing all the time that Kaitlyn is doing as well as she is. Many children born as early as she was face much more difficult roads through life than she does. However explaining that to a sweet little 8 year old is incredibly hard.

Since I'm pretty sure that Santa isn't going to grant Kaitlyn's Christmas wish, I really do wish I had a magic wand to wave to make this all go away for her...

Some things just pull at my heartstrings...

It's funny how these things tend to come in waves. I ought to know better than to let myself breathe too easily when things are going well. March was really an amazing month. Between our trip to Disney World and Kaitlyn's birthday, life around here was really happy.

Whereas March was all about rainbows and fairies, April is turning out to be more about frustration and annoyance.

Most recently Kaitlyn's been asking me if she can play soccer on a team like Connor does. Chris and I have always said that we would give Kaitlyn every opportunity that any other child would be given, no matter what. However, now that I'm faced with figuring this one out, I'm admittedly rethinking our strategy. For Kaitlyn to play soccer, there are some major hurdles to overcome. The biggest decision would be whether or not she would use her walker. When she plays soccer here in the yard, she doesn't use her walker. Luckily her neighborhood friends are AMAZING. They all watch out for Kaitlyn and take precautions not to bump into her. I even overheard a 3rd grade boy say to his teammate "Don't steal the ball from Kaitlyn.". I've never asked these kids to give her any special treatment, but the fact that they have done it on their own just warms my heart. However, on a soccer field with "real" players, I would anticipate that Kaitlyn would get bumped and knocked on her butt all day long. With that in mind, I can't imagine her playing without her walker.

So, the only real option would be to use her walker (which she would most likely hate). However, I'm not even sure if the league would allow it. I recently read about a family who had to file a lawsuit against the town they live in to allow their 9-year old son Ryan to play soccer with his walker. The league said that it was a danger to the boy and to other players on the field who could get hurt if they bumped into the sharp metal corners. A federal judge ruled that Ryan should be able to play soccer. He ruled that the walker must be padded, and that the league had to provide an adult to stay near Ryan on the field. I can't help but wonder if this is something we are ready to face. Truth be told, I have no idea if Kaitlyn would be allowed to play here in our town. Even if she's allowed, I'm not sure that I feel that it would be safe for her. I'm really not sure where to go with this whole thing...

On another note, Kaitlyn has been telling me that she's been spending most of her time at recess playing by herself, mostly on the swings. Knowing what a social girl she is, I'm always surprised to hear that she's spending a significant amount of time by herself. When I pressed her about it, she told me that she would prefer to play with her friends, but that they run around and play games that she can't keep up with. As a matter of fact she said that they line up to go outside, and as soon as they get the chance the kids all run off in different directions, and she gets "left in the dust". With everyone gone, she makes her way to the swings and hangs out alone. How sad is that???

Chris and I tried to give her some tips to help her through this. We suggested that she make some plans ahead of time at the lunch table with some of her friends. Sure enough Kaitlyn has become quite skilled at planning activities for her and some friends. She is so excited to come home and tell us that she got to spend time playing with her friends instead of hanging out by herself. We've seemingly dodged this bullet for the time being, but situations like this truly pull at my heartstrings a little. I wonder how long this had been going on without me knowing about it?

It's amazing to me how some of the things people take for granted are so difficult for Kaitlyn. When most children ask their parents to sign them up for a sport, it's usually as simple of filling out a registration form and paying the fee. Five minutes later, your done. As a matter of fact our biggest dilemma with Connor this season was trying to figure out which 2 of the 3 sports he wanted to play we would allow him to play. Similarly, for most children simply running around with their friends is something that happens naturally, without any forethought whatsoever. For Kaitlyn these are just two examples of seemingly mundane activities that for her present monumental challenges.

The one upside to all of this is that I know that this too shall pass. These challenges are certainly going to continue to arise year after year. My goal is to meet each one head on, and together with Chris figure out a solution to each situation one step at a time. Okay, that's probably more easily said than done, but it sounds good, right???

Happy 8th Birthday Sweet Kaitlyn!

I love, love, love Kaitlyn's birthday! The reason that I love it so much is because she loves it so much! On her big day she woke up with an extra bounce in her step and announced that she felt bigger. She spent the whole day with a giant smile on her face, and truly enjoyed every bit of celebration that we jammed into the day.

She asked that in lieu of a party that she and I go to the mall for a shopping spree. She loves to shop, so this was the perfect way to celebrate her birthday. She picked out the perfect shopping outfit, and off we went. She hit all of her favorite stores, including Claire's, Justice and Build-A-Bear. She took her time in each store picking out all kinds of fun stuffed animals, earrings, and clothes. Once she was all shopped out, we headed home to enjoy some birthday cake with the neighbors, then headed out to a dinner where she had a big bowl of her favorite meal - spaghetti and meatballs. Check out the picture of her cake below. My super-talented friend Kim made it for her. Most days around here you'll find Kaitlyn listening to her IPod and dancing around the living room. So what better cake to make than a pink IPod cake? Kaitlyn LOVED it!

It was just a great day all around. It's nice to take a day off from all of the challenges in Kaitlyn's life, and just celebrate her awesomeness. She is just the sweetest, happiest little girl, and I really am so lucky that she is my daughter. On her birthday each year I can't help but reflect on the day she was born. This year instead of thinking too much about her rough start, I chose to be grateful for just how far she has come. Although she has challenges to overcome each day, she does so with her signature positive outlook and unbridled enthusiasm. It is such a treat to watch her grow up.

Here are some pictures from her big day. Hopefully you'll get to see what a truly happy birthday she had!

Dance Center Newsletter

If you've read this blog, you know how much we LOVE Kaitlyn's dance studio! When they asked us to be the "feature family" in their March newsletter, we were thrilled to share our experience. Check out the story at the link here...

http://www.mhdancecenter.com/dance-studio/londonderry-dance-koza/

Kaitlyn’s Make-A-Wish Trip to Disney World!!!

What can I say…this trip was truly a dream come true for Kaitlyn. I really can’t put into words just how grateful we are to the Make-A-Wish (“MAW”) Foundation for granting Kaitlyn’s wish! We had a truly magical week at Disney World, and Kaitlyn was treated with incredible kindness and compassion because she was there as a “Make-A-Wish Child”.

In an attempt to keep myself writing a mile-long post, I’ll try to just give you the highlights. When we arrived at the airport in Orlando, we were met by the cutest two MAW volunteers. They were retirees who moved to Florida from Chicago, and they volunteer one day a week for MAW. Imagine our surprise when the sweet little retried lady gathered a cart for our luggage, escorted us through the crowded airport, stopped an elevator for us, and moved us to the front of the rental car line with all of the tenacity and organization of a military drill sergeant! As she walked behind the rental car desk to help herself to two car seats, I turned to Chris and said “I love her”. With that we were off to start our vacation…

Kaitlyn’s wish was “To see Cinderella’s castle”. When we arrived at our hotel – the Hawaiian themed Polynesian Resort – we were greeted by a gorgeous Hawaiian lady who presented us all with brightly colored Hawaiian leis. We checked in at the front desk, and then made our way to the “Tahiti” building. As we entered our room, Kaitlyn nearly fainted on the spot when she realized that our room had an incredible view across a lagoon of Cinderella’s castle!!! She was able to wake up each morning and look at the castle, and we all enjoyed watching the fireworks over the castle each night from our room – amazing! The hotel was just gorgeous. My only complaint about the hotel is that we just didn’t have enough time to enjoy it!

Our favorite park by far was the Magic Kingdom. The kids had a blast! Connor’s favorite ride was Pirates of the Caribbean, while Kaitlyn’s was Splash Mountain. I have to say that Disney really makes an effort to accommodate people with disabilities. Kaitlyn received a special card that I wore on a lanyard around my neck along with her MAW pin. The card and pin served as indicators to all of the ride operators that she would be allowed to bypass the lines. Since fatigue and exhaustion are huge issues for Kaitlyn, this was just an awesome service that they provided. She handled the long days & nights like a trooper. However, I have to say that my heart went out to Chris. He really did the lion’s share of transfers in and out of Kaitlyn’s wheelchair. Of course he did this without complaint, but I know that lifting 50+ pounds on and off of every ride had to be exhausting for him. If he had to Chris would carry Kaitlyn on his back all day to make sure she didn’t miss out on something – I’m so grateful that Kaitlyn has such a dedicated dad!!!

After the Magic Kingdom, we made stops at Epcot, Hollywood Studios, Universal Studios and Sea World. The week was a whirlwind of fun, with the highlights being a lunch with the princesses, feeding the dolphins at Sea World, and hitting every ride their little hearts desired! At every park Kaitlyn was treated like the princess she believes she is, which was just awesome. Honestly, for all of us to have a break from doctors, physical therapy, and thinking about cerebral palsy was quite welcome.

In the interest of full disclosure, there was one part of this week that was difficult for me emotionally. In our everyday life, Kaitlyn enjoys a certain amount of physical independence. Most places she goes (school, the mall, dance class, running errands), she is able to walk – either independently or with her walker. Last year, after taking her to an air show on a 90 degree day that required a TON of walking, we realized that she simply couldn’t handle walking such long distances. So, we finally got her a wheelchair, which was emotionally a hard pill to swallow. We had hoped that this was something she would never need. We even toiled with what to call it…we went from “stroller”, which we all decided seemed to “babyish”, to “hot wheels” – Kaitlyn’s suggestion, and a few other options. It seemed that neither Chris nor I could deal with calling it a “wheelchair”. However, calling it a different name doesn’t change the fact that it is what it is, and that’s a wheelchair. Although we’ve used it a few times over the past year, for a trip to the mall or a local amusement park, she’s never been in it for more than a few hours, and certainly never two days in a row. Until now. Seeing her in her wheelchair for a week straight broke my heart a little bit. There really wasn’t another option. The crowds alone would crush Kaitlyn. She couldn’t handle even 5% of the distances we covered in a day. While part of me was so appreciative that we had this wheelchair for her, there was another side of me that hated seeing her lined up with all of the other wheelchairs in a cordoned off handicapped section to watch the fireworks. It’s amazing to me that 7 years into this diagnosis I still seem to be coming to grips with accepting the physical challenges that will always be part of Kaitlyn’s life. The funny part of all of this is that Kaitlyn told me that she really likes her wheelchair because it’s super comfortable. Her only complaint is that we haven’t blinged it out for her so we need to get on that! Once again it’s Kaitlyn who is teaching me an important life lesson…

Well, what can I say – we all enjoyed the trip of a lifetime! The level of appreciation and gratitude I have for MAW for granting Kaitlyn’s wish is impossible to convey. Hopefully the smiles on the kids’ faces will give you an indication of what a great time we all had!!!

Motion Analysis Lab

This week Kaitlyn got to participate in a really cool diagnostic test. It's days like this that I am so happy that we are lucky enough to live an hour from Boston where she can see some of the best doctors and benefit from all of the state-of-the-art technology that they have to offer.

We went to the Motion Analysis Lab at Spaulding Rehabilitation Hospital where Kaitlyn participated in a "Gait Analysis". This test takes a detailed look at gait deviations in an attempt to gain specific information as to exactly which joints and muscles are performing correctly or incorrectly. The test works through a system of high-tech cameras that map motion three-dimensionally. Several reflective markers were strategically placed on Kaitlyn that recorded movements of her legs, and EMG electrodes were placed in very specific locations on her that recorded the activity of 16 lower limb muscles. Cameras used the sensors and electrodes to record her movements. Additionally, a physical therapist performed a clinical evaluation and a video was made of her walking.

Here is a picture of Kaitlyn all sensored-up and ready to go...



It took about 30 minutes to get all of the little sensors placed in just the right spots, then she was ready to go. She had to walk back and forth on the "runway" a whole bunch of times while they videotaped her and while the sensors logged her movements. She did the first walk holding someone's hand. After that I told them that I thought she'd be fine going alone, and of course she then put on her best walking show!

She did great. She had one little fall, but that was it. She was super cooperative and agreeable saying things like "Do you want me to go faster?"..."Should I step to my left a little so that you can see me better?"..."I can keep going if you want me to..." - She's such a trooper! Although they told her that she could have as many breaks as she needed, she didn't ask for even one break. I stopped them once and gave her a little snack and drink, then she was back to test. I know I sound like a broken record, but she really is such a trooper with these things. She hung in there for 3 hours without even the slightest complaint.

So, in a few weeks we will get a report that will give us some much anticipated information that the doctors can use to help formulate their recommendations for treatment. I'll be sure to post an update then!

Dreams Do Come True

Well, lets just say our family has experienced one of the most emotional days of our lives.

Kaitlyn's dance studio held a fabulous fundraiser where the proceeds went to the Make-A-Wish foundation. She was so excited to participate in this event, and was happy to help raise money to grant wishes to kids who have serious medical challenges.

I cannot begin to explain how surprised she was when at the end of the performance, a Make-A-Wish "Wish Granter" named Jennie came on stage, and granted a wish to Kaitlyn! Our family will be taking a trip to Disney World to grant Kaitlyn's wish which is "to see Cinderella's castle". She has been in love with Cinderella since she was 2 years old, this is truly a dream come true for Kaitlyn.

A couple of months ago we got a phone call from the Make-A-Wish foundation letting us know that one of Chris's colleagues had referred Kaitlyn to them. Soon her Wish Granters Rich & Jennie (two of the most caring, compassionate, giving people you could ever meet) visited us and took lots of time interviewing Kaitlyn and Connor. Kaitlyn told them that if she could have any wish in the world it would be to see Cinderella's castle. The Wish Granters said that they would do their best to help grant her wish, and off they went. On occasion Kaitlyn would ask me if I thought her wish would ever come true, and I kept saying "I hope so Kaitlyn. Keep wishing and dreaming, and maybe your wish will come true...".

I'm so grateful to both Kaitlyn's dance studio and to the Make-A-Wish foundation for making this dream come true for her. When we moved to the area 3 years ago, Kaitlyn announced that she'd like to take dance class. I immediately started looking online for a studio. To my surprise, the response was far from welcoming. The first studio just didn't return my call, the second said that the didn't feel that they were the "right fit" for Kaitlyn, and the third said that they'd be happy to let Kaitlyn join them - in a "class made up of kids like her" - whatever that means. Just when my frustration had peaked, Kaitlyn's physical therapist said "Have you called Melissa Hoffman"? Somehow I had missed her awesome dance studio in my research. I called, and Melissa invited me to come in and talk with her. She spent 30 minutes on the floor with Kaitlyn, getting to know her and gaining an understanding of her challenges. She told me that day that she would love to have Kaitlyn join her group. She was completely honest about the fact that she wasn't quite sure what she could do for Kaitlyn, but she was committed to giving her the best dance experience she could. From that day forward, Kaitlyn has been warmly welcomed into 3 different dance classes, with the kindest, most supportive teachers I could imagine. She is treated just like every other child, which means more to her than anything. Dance is the single most impactful activity in Kaitlyn's life. It has benefited her not just physically but emotionally as well. To get up on stage and dance her heart out with her peers makes her happier than anything else in the world. I'm just so grateful to Melissa, Sandi, Adria, Mindy, and all of the staff who have made dancing such a huge part of Kaitlyn's life.

I'm also so thankful that the kind-hearted people at the Make-A-Wish foundation have granted Kaitlyn this wish. When most people see Kaitlyn, they see a girl who starts and ends each day with a smile, and loves to sing, dance, do artwork, read, and spend time with her friends. What they don't know is how much Kaitlyn really goes through just to get through an average day. Until you live with a child who struggles to walk across a room without falling, who has to wear all kinds of braces or other specialty made gear just to help provide some stability, who can't eat a popsicle or hard candy without aspirating the liquid into her lungs, who endures daily a daily stretching and physical therapy routine that would rival a professional athlete's, who lives with chronic pain, and who has had more therapy, doctors visits, procedures, treatments and surgeries than most 80-year olds, you really can't imagine how challenging life can be..

What's most amazing is that she endures all of this without complaining. She grits her teeth and gets through all of these challenges without hesitation, then she goes on to make the best out of each and every day. I am so appreciative that Make-A-Wish is going to give her this trip, and allow her to take a break from all of her challenges. What an amazing organization they are.

Here is a clip of her getting the good news...


Here are a couple of pictures of her big day, and a video clip of her dance performance:

All made up and ready to go...


Kaitlyn and dance studio owner Melissa...


Kaitlyn and Wish Granter Jennie...

Kaitlyn Sings "Somewhere Over the Rainbow" (7 Years Old)

I just couldn't be any more proud of Kaitlyn. Today she got up on stage, and sang "Somewhere Over the Rainbow" acapella at a school event. She just amazes me with her confidence. The world truly is her stage, and she is happiest when she is performing.

It was very nice of Chris to capture the video so I could watch her perform. However, a coupe of technical missteps resulted in him snapping pictures throughout the whole performance, and missing the beginning including her opening words..."I'd like to dedicate this song to my Dad because today's his birthday. Happy Birthday Dad!" Oh well, you'll still get to see most of the performance here...ENJOY!

Happy New Year!!!

Yes, I'm back after a much needed blog-break! I can't tell you how nice it was to hear from so many friends, family, and CP parents letting me know that you missed hearing updates on how Kaitlyn is doing. It's a new year, and the perfect time to get back out here in the blogosphere...

Since my last post in August, a lot has changed for Kaitlyn. I am happy to report that she is LOVING second grade! She hit the teacher jackpot this year, something we're all grateful for. Her teacher is one of those people who possesses the perfect trifecta of second grade teacher traits...she's energetic, dedicated, and fun. Kaitlyn also has a new aide this year. Luckily she is a really nice fit for Kaitlyn. Socially Kaitlyn has maintained a nice group of friends from years past, and has made a couple of really sweet new friends this year. She still loves reading, singing, and dancing. Overall, second grade has been a great experience so far.

Unfortunately the last few months for Kaitlyn physically have been incredibly difficult. As kids do, Kaitlyn has gone through a fast growth spurt in the last year. Unfortunately, this is not a good thing for her. To put it simply, her muscles don't have the ability to grow and stretch at the pace they need to in order to keep up with her bone growth. The results of this growth spurt are that Kaitlyn now has an additional diagnosis of scoliosis. Also, her right leg is now a full centimeter longer than her right. Her hips are still slipping out of their sockets, although a little less than in the past. The most problematic development is in Kaitlyn's gait. She is now having extreme difficulty walking independently. She is falling all the time, and the falls are resulting in all kinds of injuries. We are encouraging more use of her crutches and walker, but Kaitlyn's fierce determination to be independent means she has little interest in either of those. We are trying to get to the root cause of the change in her gait pattern, which has proven difficult.

In a nutshell, we are trying to sift through several different doctor's opinions as to what the cause of the problem is, and what the best treatment plan is. Here is the breakdown:

*Her physiatrist here at Tufts in Boston believes that tight hip adductor muscles are the problem, best treated by injections of either Botox or Phenol to relax those muscles, with muscle lengthening surgery being a possibility after that.

*Her orthopedist at Tufts believes that she is troubled by tight hip, hamstring, and heel cord muscles best treated by injections first, and surgery to lengthen the muscles second. He also is concerned about the bone development in her left leg, and mentioned the possibility of an osteotomy which is a painful and invasive bone surgery that I don't even want to think about at this point.

*Her neurosurgeon (who performed her SDR surgery in St. Louis) disagrees with both of those opinions. He firmly believes that muscle tightness is not the issue at all. Instead he sees the problem being that her muscles are too short, and her hips are extremely weak. He believes that injections are the absolute WRONG treatment, because that would just result in weakening the muscles, not lengthening them. He recommends muscle lengthening surgery as the best option.

So, to say that Chris and I are confused is a huge understatement! We have spent hours going through our questions with doctor after doctor. Kaitlyn has endured hours of hospital visits, x-rays, and exams. She has been getting stretched like crazy at home and at school, she is wearing leg braces every day, and casts at night. She has been really dedicated to doing her exercises too. We have been researching everything we can on our own. Yet still, we really aren't sure what is the best plan of action. The next step is to perform a diagnostic test on Kaitlyn that involves sedating her and giving her some fast-acting, short-lived injections in her hip muscles that will allow the doctors to see how her muscles react. This should give the doctors some indication of if long-term injections would be beneficial, or if surgery is a better option. Also, we are going to the CP Clinic at Children's Hospital in Boston to get their opinions. Hopefully after all of that we'll feel ready to make a decision as to how to help Kaitlyn.

Although this is nothing new to us, having the responsibility of making such important decisions that will effect the rest of Kaitlyn's life is just so daunting. She is just the sweetest, happiest, kindest little person, and we just want to do everything we can to give her the best possible outcome. However, we know that if we choose the wrong plan, the damage could be irreparable. So scary.

So, if any of you have some words of wisdom you'd like to impart on me, I'd love to hear them! Otherwise, please keep your fingers crossed that 2012 will be a better year for Kaitlyn physically, and that she maintains her cheerful spirit and positive attitude with whatever comes her way this year!

Here are a couple of pictures of the kids - they sure have grown since my last post over the summer!

Happy New Year Everyone!

Little builder...

Connor's Kindergarten Picture...

Kaitlyn's 2nd Grade Picture...

Antlers...

Making Christmas cards...

Whipping up a treat for the family bake-off...