November 9, 2011

Hippotherapy - Getting Started

Charlie had his first two hippotherappy sessions at Park City's National Ability Center. As expected it was a bit of a challenge with so many new things at once. He didn't like the required helmet, so he fixated on that right away. But he LOVES his horse, Captain Brownie. Captain Brownie is small and fuzzy and amazingly patient. He moves slowly and reliably on verbal commands and he's extremely interested in Charlie.


His sessions are in an inside riding ring which has many adaptive considerations, including a ramp to a loading dock, so Charlie can walk up to Captain Brownie on his own. That ramp also leads to a sliding, mechanical harness which allows the staff to load disabled adults onto their horses. Charlie got to watch that procedure and thought it was pretty cool.

Charlie's first two sessions have been tough because of the equipment, and because his therapy requires the hands-on attendance of professional therapists with whom he's still becoming acquainted. So Sarah and I have to watch from outside the ring. But that's ok, because the staff members at the NAC are patient and kind, and they're very sweet to Charlie. So he'll come around.

We're excited for Charlie's next session this weekend, and Charlie gets excited when we mention Captain Brownie. We're so grateful for all the generous help from our friends and families. Thank you to all those who participated or donated to Crest on Cruisers. We're so lucky.

Here are the pictures we've managed to snap so far.


More Pictures »

October 25, 2011

Great Strides! Charlie's first steps

Charlie took his first independent steps this weekend, just after his second birthday. It was a quiet evening at home and we were horsing around. I propped him up against the couch and we did some lunging. I backed up an inch or two at a time and started patting his feet. Before I knew it he was taking a step, then two, three, four! I cannot express how overwhelmed I am with joy.

I want to celebrate this moment by sharing some highlights from the last year as Charlie started by struggling just to sit up independently. Then after months of hard work, he learned to crawl. Now, having walked with assistance for almost a year Charlie has realized that there’s nothing in this world that can hold him back.

Once more, we’d like to extend our thanks to all the therapists, doctors and specialists who have helped Charlie reach to this great height. And thanks also to friends and family for your support and encouragement.

Enjoy!

Charlie has Cerebral Palsy. But it by no means has him. This is his courageous effort leading up to his first independent steps. We are so proud of Charlie and can't wait to see what he does next.

September 26, 2011

Crest on Cruisers Recap

Thank you all.

We cannot express how grateful we are for everyone's generosity and thoughtfulness in putting together Crest on Cruisers. The event was fun and silly and it raised about $3,000 for Charlie's Hippotherapy. We have been overwhelmed with the support of this amazing community and cannot thank you all enough. We received donations from friends and family, and even some strangers. We made new friends and had a wonderful time. Charlie doesn't realize (yet) what an amazing community surrounds him and awaits his every heroic step. We can't wait to post updates from his hippotherapy sessions. But in the mean time, enjoy these pictures from the event.

For those who were not able to attend, we appreciate your thoughts and generous support. We look forward to paying it forward next year in support of other families. We are truly amazed by the support we have received.

A special thank you goes to Chris Petty for conceiving of and organizing the event. Also to Stacey Zavadil for creating the website promoting the event. We love you guys.


August 22, 2011

Crest On Cruisers

Charlie’s Diagnosis of Cerebral Palsy was not a surprise to us. But for our friends and family, it has struck a nerve. Several of our friends in Park City have decided to organize a unique fundraising bike ride to help pay for Charlie to attend private hippotherapy sessions at Park City’s National Ability Center. Needless to say, this has touched us deeply and we’re so appreciative.

The bike ride is called Crest on Cruisers and it’s quite silly actually. On September 11th, we’ll be riding beach cruisers from the top of Guardsman’s Pass (9,150' elevation) to the Wasatch Crest Trail along the top of Deer Valley Resort. The ride, although short, quickly gains 700+ feet of elevation over a steep dualtrack, culminating in the loose, rocky stretch to the top known as “Puke Hill”. An arduous task even for seasoned mountain bikers, this ride is intended to be impossible on comfort bikes. But the effort will be fun to watch and all attempts will be met with applause and gratitude.

Most importantly, we hope to make this ride an anual event, benefitting a different deserving party each year. When I was informed that we were to be this year’s beneficiaries, I decided to focus on making this a success for years to come in order to pay it forward.

To date (8.22) this amazing effort has raised $1840 online and we could not be more grateful for everyone’s kindness and consideration. Special thanks to Chris Petty, Stacey Zavadil, Joe Johnson, Carolyn Wawra and all those who have helped organize this amazing event. And thanks also to all those who have donated and registered for the event. We are truly humbled by your generosity.

August 16, 2011

“I Go”

Three mornings a week I drop Charlie off at Daycare. I typically carry him in while all the other kids his age walk in independently, mostly because I am late for work. Joe, my mom and I are all reading various books about parenting children with CP and one thing to note was that we need to adapt to create a sense of independence for Charlie. So today I brought his walker to school with us and placed it next to the car. He grabbed right on and charged towards the curb. With just a little help over the curb he was off and charging up the ramp to the doors. A very kind woman patiently held the door for him and he smiled as he passed her but didn't slow down as he headed down the hall. Without prompting he took the left to the door for his section of daycare. The left front wheel of the walker hit the corner and he just inched it around with such ease I almost started crying.

I learned something today. My little boy can be an independent toddler and get places on his own, with the walker of course, and I need to let him be that big boy. Even now, hours later, it brings a smile to my face and tears to my eyes to remember what an amazing job his did this morning. I know I am in for a constant stream of moments like this and I look forward to them. I also know there will be many more obstacles and struggles ahead. But just like you carry the weightless sensation of skiing a fresh line with you over the seemingly endless days of chopped up lines in between the storms; I am going to carry these feelings of pride and love with me through whatever comes next until he amazes me yet again.

July 29, 2011

Shapes and Colors

Joe and I had such a wonderful evening. When I arrived home Charlie and Joe were heading our for a walk. Charlie started on his usual path connecting all the manholes in the neighborhood. It makes me so nervous because of the way everyone drives around here. M&M (aka Mrs Myers) had said it appeared that Charlie was rounding the bases. This gave me an idea to cut shapes in some neon printer paper that has been sitting in the spare bedroom closet for years without purpose. It was an amazing success. Charlie walked along the sidewalks of our neighborhood stomping the different shapes. As a working mom I often feel like I am just an observer in Charlie's therapy, the one who schedules the appointments and pays the bill. Tonight I feel amazing knowing that I was able to create a fun environment for my little boy to work through his disability. It is the little moments that mean so much.

video

June 21, 2011

Cerebral Palsy, Our New Challenge

If you've been keeping up with Charlie's progress, you may know that he's fallen behind on physical milestones. Typically, a 20-month old child is running around and talking with some proficiency. Charlie has required some extra help so far, and his recent MRI confirmed that he has a mild case of Cerebral Palsy.


What are we dealing with here?

Cerebral Palsy is a sort of catchall phrase for a spectrum of neurological and neuromuscular conditions. What does that mean? Well, let's start at the beginning. Charlie was born prematurely at 31 weeks via emergency c-section. He suffered a small right side brain bleed, causing some damage to the white matter of his brain, the connective tissue between nerves. As a result he has developed hypertonia (increased muscle tone) in his back, legs, ankles and feet. This causes his back to arch and allows him much less flexibility. It also manifests as an asymmetrical pronation in his feet. He stands up on his toes, while his left foot lies unnaturally and shows less stability and control than his right.


Good news

The good news is that Charlie's case is considered very mild by all accounts. In the limited time we've had to absorb this news, we've seen kids who face much greater challenges than our little guy will. We actually consider ourselves quite lucky in that sense.

It's also important to note that his disability is NOT progressive, which means it will not get worse. In fact, we've been assured by his many specialists that he will learn to work with and around this disability. He may never be an olympic sprinter, but he could potentially still enjoy skiing or biking if he wants to. His fine motor skills do not appear to be as affected as his gross motor skills. And while he still has to complete a speech therapy screening, Charlie does seem to be intelligent, creative, sweet, and very charming.


More good news

Charlie is getting more outside help than I ever realized was available. Sometimes it seems like his life is rigidly scheduled between doctors, specialists, therapists, daycare, swim lessons, etc. But what it means is that there are many people who care about his wellbeing and are invested in his progress. Currently, he sees a physical therapist, an occupational therapist, a speech therapist, a pediatrician, a neurologist, an orthopedist, an orthotist, a chiropractor, an ENT, and has also been treated for 3 cases of Croup, a couple ear infections, and god knows what else. And did I mention he spent his first month of life in the NICU at Saint Marks?

Charlie has recently had a pair of plastic braces custom made for his feet and ankles to correct his pronation and tiptoed stance. They're lightweight and relatively unobtrusive. We're so lucky to live in an era of advanced technology and specialized research. After only a month in his braces, Charlie has shown significant improvements in his stance and stability.



Recently Charlie was accepted by Shriner's Children's Hospital, which is a wonderful place with a wealth of resources for kids with neurological disorders. And since Shriner's operates largely with the benefit of philanthropic donations, they address the proper care BEFORE they address payment. This has taken a huge burden off of our shoulders and we're so grateful for their help. I encourage you to learn more about Shriner's and consider making a donation if you're ever able.

Another treatment we're considering is called hippotherapy, where children with neuromuscular difficulty ride horses to encourage stability, core strength, balance, posture, muscle tone, and emotional development. We're fortunate to live near Park City's National Ability Center, which offers this service. And while it's not covered by insurance, we're happily saving up to string together a series of visits.


How are we doing, you ask?

Remarkably, Charlie has handled all of this with grace and resilience. He's a happy little boy and he inspires us to work even harder to keep that smile on his face. Often when I feel tired or inadequate, I'm able to draw strength from him. For example, when suffering through a recent workout I thought: "Sure I could run 2 miles instead of 3, but what would Charlie say?" I've learned that giving up on myself means giving up on him. And that's not something I could ever do.

We've been told it's natural to feel anger or a sense of loss when your child is diagnosed with a disability. And I'll admit we've been through the ringer, feeling frustration and exhaustion. But grief would be an exercise in self-indulgence we can't afford. Charlie is such a gift, we're just grateful to have him. He enriches our lives every day.

It's also important to note that Charlie doesn't need our sympathy. What he needs is toughness. He will have to be tough to live the life he deserves: one of possibility and hope; and without excuses or self-pity. So for that, we'll have to learn to be tough.

We'd like to thank our families for their support. Sarah's parents have been amazing. They help out with daytime care, offering at least a day a week so we can get work done and enjoy an occasional day alone. And my family has also shown great support from New Hampshire, checking in and offering words of encouragement. Charlie is surrounded by love and for that, he's the luckiest guy I know.