4.23.14 Dedication – Claire

I have to agree with Claire’s mom, you can see her personality through her smile and it is definately infectious!  Tell me you are not smiling back at her?  I wonder if she has glasses to match each of her outfits? 

claire

 

“Our daughter, Claire, will be two in April.  She’s a little girl who loves many things:  playing in her ball pit, banging on the piano, playing “roll the ball” with her big sister Abby, shaking maracas, and popping bubbles.  She also happens to have Williams Syndrome.  Having Williams Syndrome is just one of the many aspects that make up her total character. 

 Our journey with Williams Syndrome (although we didn’t know it) began before Claire’s birth.  Claire didn’t grow as quickly as she should have while in the womb, and our high-risk pregnancy doctor found something different with her heart.  She was born at 36 weeks at a lean 4 lbs 6 oz.  She was such a tiny little thing – but oh!  She had the loudest screech EVER!  Like a little baby pterodactyl!  When we were able to take Claire home, we were distressed by how miserable Claire seemed to be.  She couldn’t eat, couldn’t sleep, and would screech and cry for hours at a time.  As the months progressed, we started noticing developmental delays.  She started to bang her head on the floor and would head-butt people out of frustration.  It seemed that we lived that first year going from neurologist to gastroenterologist, pediatrician to ophthalmologist, to cardiologist to other specialists, never getting answers of how to help her. 

 And then when Claire was 11 months old, her cardiologist casually asked me if I had ever heard of Williams Syndrome.  No, I replied, but I’ll look it up.  A few days later when I looked at the Williams Syndrome Association website, it all clicked.  I recognized Claire’s sweet face in the pictures of babies with Williams Syndrome.  Everything moved quickly after that.  She had a microarray done that confirmed what we already knew in our hearts – Claire has Williams Syndrome.  She was diagnosed with hypercalcemia and hypertension.  We have been able to control the hypercalcemia with a specialized formula and hypertension with medication.  She has had two eye surgeries, one that appears to have corrected her strabismus.  She recently had a heart procedure that ruled out major heart issues.  Claire will be having major dental surgery to extract most of her teeth in the near future.  Claire has fantastic speech, occupational, and physical therapists that challenge her. Claire consistently impresses them all with her tenacity, perseverance and hard work every session.

 I won’t lie – the first year since her diagnosis hasn’t been easy.  We’ve learned to take each thing as it comes.  We’re thankful for every piece of good news and every positive development.  We’ve also learned that there is an amazing community of people that are walking similar paths.  I am so thankful for the support groups that have welcomed my family with open arms.  To have the support groups as a resource for knowledge sharing as well as having a safe place to share frustrations has made a huge difference for us.

 Claire has changed so much in just the past few months.  She may not walk yet, but she sure can crawl like lightening!  She doesn’t speak or babble, but she doesn’t shriek as much anymore.  She can clap her hands together now, and is beginning to communicate via sign language.  Claire has an eclectic taste in music that stretches the gambit from Daft Punk to the opera “Carmen”.  She loves being read “Ten Tiny Tickles” over and over again.  With every passing day, Claire is displaying more of her personality which is infectious to all that meet her.”

4.22.14 (stats)

From To (Arrival) ~ Miles Elevation Hours Weather Total Mi Total Hrs Riding day #
Savannah, GA Blythe Reg Park, GA 76 2-68 8 sun, low 80’s 1103 105 14

Nice day to ride.  Mostly on a 2 lane road that weaved under I-95 a couple times.    Meet Jeff and LP (friends from home) for dinner.  Wishing them good health and happiness.  Camped at Blythe Island Regional Park in Brunswick, GA.   Starting tomorrow the sunrise will be behind me and the sunset ahead…  I am averaging 79 miles per day on ride days. If you count rest days it is 50 miles per day.  Happy with that!  That is pretty much what bikers said would be a good target.

4.22.14 Dedication – Noah

The MAN of the day – Noah!  Too cute!!!   I look forward to meeting him Satruday in Folkston GA!

Noah

“Noah Palm is 3 year old boy who lives in Jacksonville, FL where he was born on November 11, 2010.  He is the son of Tyler and Jessica and the best big brother to his baby sister, Ava. 

Noah has been one tough cookie from the moment he was born!  He was diagnosed with Williams Syndrome following open heart surgery when he was only two months old.  His diagnosis was an unexpected challenge, but witnessing his incredible strength and resilience has been so life changing for us.  We could tell from the day we met him that he was going to have such a big personality.

So much joy is brought to this world by Noah’s contagious laugh and smile.  He makes people smile wherever we go.  As with many Williams Syndrome people, Noah is a social butterfly and loves saying “Hello” to everyone we meet.  He is always ready to be on the go (“Let’s Go” as he would say) and has more energy than anyone I have ever met.  He is always busy!

The Bubble Guppies cartoon, baseball and trains are some of Noah’s favorite past times.  He also loves to play on his fort in the backyard and run around with his two dogs.  Noah is also a little foodie.  He loves to eat and eats all kinds of food, but his most recent food obsessions are oranges and ice cream!

We are so thankful to have a person like Noah in our lives as he has already taught us so much about love and kindness.  We look forward to watching Noah thrive and grow into the person that God has planned for him.  We also look forward to celebrating and welcoming Kevin as he makes his journey to spread awareness for Williams Syndrome.  A big thanks and hugs to Kevin and the Payne family from Noah and the Palm Family.”

4.21.14 Gearing up day

This is the last day to be in a city for a while.  Mr Ed, having been in the USMC for 16 years and Ms Lorrie still in the Army will give suggestions on packing, weight distribution, and will take me around town in case I need anything (like getting some strong bolts (and extras!) for the gear racks, Dad said a #8 bolt should do it).  Tomorrow morning I will start heading Westward!    It will be a swampy and fairly flat, easy ride to Folkston for the event next weekend.  That will be it, the only hard deadline is Anheim in July. There is all of May and June to trek just over 3,000 miles. Averaging 50 miles a day should do it, a steady pace.  Biking  75-100 miles (especially in flat areas) will leave room for rest days must see spots – Hot Springs National Park, Turner Falls Park, Petrified Forest, Flagstaff, Grand Canyon and Vegas.  Someone called me a Granola Head a couple weeks ago. Looking at the must see spots maybe I am, but definately would rather eat candy.  Thanks for following!  Dedications start again tomorrow.  LOVE Savannah!

Streets of Savannah, pefect for biking~

Streets of Savannah, perfect for biking~

4.19.14 (stats)

Today soon after leaving the campground the gear rack bolt snapped again.  I made it to a bike store in Bluffton but they said I should go to a specialty bike store in Savannah.  Thank you Ms Lorrie for rescuing me.  Once I dropped the gear bags and rack at their house I rode into Savannah to the bike store.  They gave me some pointers but they did not have a touring bike in stock for a trade.  Mom sent a front gear rack to Mr Ed and Ms Lorrie’s house that clamps on the front forks that is supposed to hold 50 lbs.  It will help distribute the weight and Mr Ed being very handy will take me to a hardware store on Monday and get me rolling again.  Jarrod is only a year older and it is great to hang with him.  We went to dinner on the riverfront. It was nice.  Hard to tell how much I rode in all today, maybe 40 miles.  Savannah is a really pretty city!

Street in Savannah

Street in Savannah

 

 

4.18.14 Funny Story (rest day)

Gotta get this story in now, time relevant…

We are Catholics and the tradition is to give something up for Lent (40 days from Ash Wednesday to Easter Sunday).  Mom was explaining this to us when we were little, maybe elementary school age.  Jake, without missing a beat said, “I’ll give up fighting with my brothers… unless they start it”.  Mom didn’t buy it and said he would be giving up tootsie rolls.

Ducks like McDonalds.  Maybe it should be called McDuckals. Sorry, that was pretty dumb.

Ducks like McDonalds. Maybe it should be called McDucknalds. Sorry, that was pretty dumb.

Oh Lawdy, guess I won't wear a speedo this summer.

Oh Lawdy, guess I won’t wear a speedo this summer.

 

 

Kori, me and Jake in HH

Kori, me and Jake in HH

4.17.14 Funny story (rest day)

“Walking down the hospital hallway… Jacey spotted a little girl (about the same age) walking toward us with her Dad, she starts running and saying “hurry, hurry”. We caught up to this cute little girl (who has lost her hair from chemo treatments) and Jacey reached out her hand and said ” oh, it’s a princess”. That little girls whole face just lit up while her Dad and I were rendered speechless. And in true Jacey fashion, she just as quickly said “bye!” & off we went”

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“The other day Sophie was looking through one of those viewfinders (you know the kind where there are little pictures that you pull the lever down to view the next one) Anyway,,, she was looking in it and I asked her what she saw. I was waiting for her to tell me the little boy from the toy story movie (since that is what the picture really was) and instead she responds “I see a friend”.  Typical.”

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And a quick “Great Job!!” to Rob, our older brother. He is a film major at Ringling College of Art. He loves the performer Mirror Kisses and created the OFFICIAL video for his song “Genius”.  Great painting B-Dog and Adrien.    http://www.youtube.com/watch?v=d5N-e5oQUBY  or http://vimeo.com/89887635

Has had great reviews from the people in the music video industry!

 

 

4.16.17 (stats)

First let me shout out a Happy Brithday to Aunt Sherry, thank you for all your comments, encouragement and prayers!

Arr Date From To (Arrival) ~ Miles Elevation Hours Weather Total Mi Total Hrs Riding day #
4/16 Walterboro, SC Hilton Head, SC 85 4-92 5 sun, wnd, 60’s 922 93 12

Look at that!  More than 10% into the distance of the ride.  I can definately see doing this 10 more times (I know, I have hard roads and scorching weather ahead for a few states). Doing OK on funds so far, spending on average $16 a day. That may increase a little on the trek from GA to Vegas. It’s all good!

I rode into a campground in Bluffton just after noon where Jake and Kori, friends from back home, are staying. Bluffton is only about 65 miles from Walterboro where I was last night.  After lunch we all hopped on bikes and rode into HH, that is where the extra ride miles came from today.  HH is a really neat place and I would love it if it was a little warmer. Great weather for riding, a little cool for swimming.  I will hang here for a couple of days so there will not be (stats) updates but be sure to come back to read funny stories. 

bon fire

No, this is not my tire, we found it and what a great way to recycle!

 

4.16.14 Dedication – Payton

 Payton, today is all yours!!!  Look everyone, a Princess is holding a Princess!

payton littlejohn

 Payton is a happy, enthusiastic 10 year old with William Syndrome.  Her smile brings sunshine to anyone she meets and her personality makes her shine.  She was diagnosed with Williams syndrome at 18 months of age after missing several milestones.  With the help of First Steps and our wonderful school system, Payton is exceeding our expectations.  She is now in fourth grade and  spends half of her time in the special education room and half of the day with her peers.  She loves school!  Payton deals with a lot of the typical issues of WS:  Anxiety, high blood pressure, scoliosis, Reflux, and sleep issues, but she is resilient and lives life to the fullest.  When she’s not at school she loves to go fishing, play basketball and baseball with her brother, and swim.  We are so thankful for Payton.  She’s given us a completely different outlook on life.  Each day is a gift!