9.29.14 Stats

We did not travel today. I am not feeling well. Just caught whatever is going around on campus.

No worries, already went through symptoms with Dr Google (aka mom) and it is not the entero virus or mono. Just thinking it is a cold with sore throat. Hope to hit the road tomorrow.

Dan and the puppies are good. A couple of pics from Dan…

Hitch fell asleep in the back pack.  hahahaha

Hitch fell asleep in the back pack. hahahaha

photo 2 (30)

photo 1 (31)

photo 1 (30)

photo 2 (29)

9.28.14 Stats

9.28

USD Graph

It was a lazy morning. We slept in then made our rounds to say “So long” to everyone. We cannot thank them enough for their hospitality.

Late in the day we left Vermillion (Univ of SD) and headed back to the KoA. Monday we will head through Sioux City and will head Eastward.

attitude

9.27.14 Stats

9.27

USD Graph

It was hard leaving University of South Dakota where we were for a couple days. The guys in the Frat house could not have been any nicer. The Sorority house had the pups. The puppies are great at spreading awareness! It was funny walking around campus. People would come up to us “Hey your’s those guys with the dogs doing that thing!” Some were more specific so we hope a good message was spread.

Dan and I headed out of Vermillion and made it to a KoA. Then after thinking about the party back at the school we turned around and went back for another night. We know it this stop is really eating into our built in rest days but we agreed we would rather push it hard a few days to make up the time. It was worth it!

We found a clean corner to take a pic?  JK  Great time at University of South Dakota!

We found a clean corner to take a pic? JK Great time at University of South Dakota!

Yes, it is a great time here AND we are making a difference. Here is a comment from Houston that he posted on Claire’s dedication page (thanks Bro):

“Bro I googled your name and a bunch of stuff popped up. From. News reports of your family to your dog hitch. You are a fantastic person. Kevin and Dan are two of the most influential boys I have met in a very long time. It’s was great getting to know you over the past 24 hours and getting the chance to chill and get to know you both. You two guys are going to be legends here in South Dakota. You touched the hearts and minds of many here and from your story influenced many others. Vermillion will always be a place for you two men!! I personally had a great day getting to know you two. Have a safe journey all the way back home. I know your families must miss you both. You better return to Vermillion SD as students. Or visitors Eric Cody and I had a great time. And Wish you well in all you do!! Safe travels from South Dakota
-Houston”

9.27.14 Dedication – Claire

I am so glad that I can say personally how CUTE Claire is. Her family hosted me in Vegas. Yes, it is her sister Abby that is my very special moon friend. Claire is a very happy toddler. She works so hard! Her smile is definitely contagious!!!!! I am so proud of her, she started take independent steps recently!!!! I can’t wait to see her again (and Ms Abby). Yes, parents Kate and Jeff and their whole family are really really nice too! Shout out to Mr Camera Productions in Vegas too!

claire in the ball pit

“Our daughter, Claire, is two and a half. 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 had major dental surgery to extract most of her teeth a few months ago. 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 and a half 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 is now taking steps on her own, although her preferred method of getting around is crawling like lightning. She doesn’t speak or babble, but she doesn’t shriek as much anymore. She may only have a few teeth, but her favorite foods are steak and popcorn! 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.”

9.26.14 Dedication – Jackson

I have not met Jackson yet. He and his mom came from Phili to the Mid Atlantic picnic at our house a couple of weeks ago. Heard he had a great time on the moon bounce. I am sad I missed meeting him and look forward to meeting him after I get back at some point. He is sooooooooo cute!
Jackson, today we are leaving the frat house at USD and will be trekking east. Today’s is your’s big man!

Jackson

Action Jackson

Action Jackson

Action Jackson debating on whether to go in...

Action Jackson debating on whether to go in…

Jackson is a sweet, kind, 4 year old little boy who lights up any room with his wonderful smile and contagious laugh. Jackson was diagnosed with Williams syndrome at 3 1/2 months old. From that day forward, Jackson has worked hard every day to meet milestones, overcome everyday challenges and overcome extraordinary obstacles. Jackson has a full schedule of therapy and interventions while attending school a typical preschool and a speech and language school. His perseverance, sweetness and amazing disposition help Jackson to meet any challenge in his way all while smiling, laughing and loving life. Jackson lives on the Main Line of Philadelphia with his parents and little sister, Everly. He loves playing, going to the park, feeding the ducks, swinging in the backyard, music and books, books and more books.”

9.24.14 Stats

USD chart

USD Graph
So Wednesday was an average day. Good temps, sunny. We did go up to University of South Dakota. REALLY nice campus! Had we thought of it a few days ago we probably would have saved 60 miles of traveling. Oh well. We will make it up.

Tell us we don’t know how to wear out a puppy? He is just too tired to move.
tttm

When I was at Slippery Rock I pledged to Pi Kapp so guess where we went? Up to the Pi Kapp house. When we introduced ourselves to them the first thing they handed us was a REFRESHING beverage. Zac and Aaron have been really nice! We stayed here the night. May stay one more day…

9.24.14

9.24.14

Univ of South Dakota 9.24

Univ of South Dakota 9.24

A preface to what the note I am going to leave Ms Abby. I stayed with Abby, her little sister Claire and of course her parent in Vegas for about a week. They hosted the party where a few other WS families came. They also arranged an interview with Mr Camera and the local TV news.

abby

Sooo… as you can see she is a pretty 6 year old but what you can’t see in this picture is there is a boy in her 1st grade class that has a crush on her. My message to Abby…
“Happy Birthday, I see you turned 6 last week! Yeah for you. Good job helping your sister learn how to walk. I know you are proud of her just like I am. Now very serious stuff here… I know your heart belongs to me Abby and mine to you ; ) SOOO, just for the next 15 years or so we need to be moon friends. When I look at the moon I will think of you and when you look at the moon you can think of me. And if a boy in your class is (in this order) NICE, KIND, FUNNY, and CUTE it is OK for you to like him too. OK? In only 15 more times around the sun, that’s all, we will see where our lives are then. Promise.”
Here is a picture of me when I was about your age. I was a rebel. Don’t like a 1st grade rebel! Nothin’ but trouble.

What the heck, it's TBT

What the heck, it’s TBT

9.23.14 Dedication – Liv

Happy Birthday to beautiful Ms. Liv!!!!

I met her and her parents in Folkston GA in April. They are super nice and Liv is super cute!!!! Here are pics that her mom posted on fb. She just brings a smile to anyone who meets her, or even sees her in a pic. Her spirit really shines!

I can’t wait to see her and her parents Kylie and Ron again! They are really cool (and mom would say they are a beautiful family, they are…)

liv

liv 3

liv 2

Liv was tested for WS at 2 days old & it was confirmed when she was less than a month. It was a rocky start, but all of her serious health issues have currently totally improved! Prayers work! Liv has hit all of her milestones on time thus far and is eating solid food (peas are her favorite)! Her favorite activities include smiling, laughing, bouncing, cuddling, making new friends, and watching TV at every possible opportunity! Liv has brought so much joy to everyone who meets her, especially her very loving grandparents!

9.24.14 Dedication – Noah

Noah – the man, the myth, the legend! I am happy to say I met Noah, his parents and sister in Folkston, GA at the Carnival day. Noah has sooo much energy! He is just all over the place, as any little guy should be!
I hear he is in Disney now celebrating his sister’s 1st birthday! Happy Birthday AVA!!! Thanks for the invite!!! I really look forward to watching them grow (through fb) and hope to see him at conventions at least!!!

niah

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. A big thanks and hugs to Kevin and the Payne family from Noah and the Palm Family.

9.23.14 Stats

tues graph

tues chart

We made a lot of headway today, about 68 miles. I was on the lb for about 20 miles of it. We had some stretches of slight down hill and the road was smooth. We did get a late start (about noon) because it was raining early in the day, and we stopped about 8:30 at night. It is now Wednesday morning. We are a little sore, I think this was the farthest we have gone.

Dan wants to go to Univ of SD. We will see how far it is. I think it is backtracking a little but not much. It will be good to be on a college campus for a day or 2. No mom, don’t you and Ms. Amy get any ideas!

We heard from our moms that there will be a welcome home party on November 15. Anyone reading this is welcome to come. We are excited to see everyone again and am looking forward to the CANDY BUFFET!

Packin up... 9.23

Packin up… 9.23

Osmond, NE 9.23

Osmond, NE 9.23

9.23.14 Dedication – Ashley

I am so happy I was able to meet Ashley, probably day 3 or 4 of the trip in Virginia. Her smile is contagious! Mom saw her at the Fredericksburg walk in May and agreed Ashley is as friendly as she appears! Hope you have a great year in school! Keep smilin!

Ashley

“Ashley is our second child, with her pregnancy everything was wrong, she is a miracle child really, she came to this world on March 30th 2005 weighting 5 pounds 6 ounces, and been 17 inches long. As soon as I saw her I was in love, she came home and nothing seemed wrong, she cried all the time for hours and hours, just as if she was in pain, all the doctors could tell me was, all babies cry and there is nothing wrong with her… With a heart murmur as the only explanation why… Time passed and I noticed that her eye lashes were inside her eyes, she had to deal with that for a year, she was late in every milestone, she stated crawling after been a year old, walking after 18 months and no talking… Again no explanation of why, when she was 3 I stated to look for help and finally got the school system to do an evaluation to her, she was diagnosed with speech delay and developmental delay, at age 4 she started pre school, and speech therapies, she started talking, the Williams syndrome diagnosing didn’t came for another 2 years, I took her to an ophthalmologist for a check up and he told me that with his experience he could tell she had WS, I went home and started the research about it, asked my doctor for a genetic test and waited… After some weeks the results came back, she had Williams syndrome, she was 6 years old at the time, after that she started special education and we now see 14 different specialists including a speech therapist, occupational therapist and physical therapist, she is now 9 years old, the light in our house and the blessing we needed, she was meant to be with us, and she is our joy. She is a very smart little girl, filled with love to give and always making people smile and laugh. Nothing stops her from getting what she wants and fighting like a trooper, I learned so much with her, people tells me that she is so blessed to have me, but I think it’s the other way around, I am the blessed one for having her.”