Support Chance in Orlando’s 1st Spina Bifida Walk n Roll

Thursday, June 30, 2011

“It’s not how much you accomplish in life that really counts,
but how much you give to others.
It’s not how high you build your dreams that makes a difference,
but how high your faith can climb.
It’s not how many goals you reach,
but how many lives you touch.
It’s not who you know that matters,
but who you are inside.
Believe in the impossible,
hold tight to the incredible,
and live each day to its fullest potential.
You can make a difference in your world.”

by Rebecca Barlow Jordan

Last fall when I was pregnant with Chance and learned he had spina bifida I admit I was devasted and feared all the worst things that could possibly happen. I have and at times still do wonder “why” our sweet baby boy has spina bifida. I know it’s something we’ll likely never know the answer to. The past year one of the few things that have helped me in justifying all this happening to him, and our family, I am reminded that there must be a greater reason…and in less than a year I’ve begun to see just what an impact my baby boy has been to so many people. This little guy is only a little over four months old and he’s already making a difference. Yes, as much as I hate knowing he has spina bifida…I’ve come to realize that through all his challenges he’s going to help so many…he already has — and I know he will continue to. And if he isn’t helping them…something tells me sharing his story is at least touching quite a few people.

So I’m excited to help spread the word about Orlando’s 1st Annual Walk-n-Roll for spina bifida. I began Chance’s team last night and in less than 24 hours I’m so touched to see so many of you reach out to support my baby boy’s team. His team has raised close to $500 in less than a day…that’s about a third of the total funds that have been raised thus far. The event isn’t until the end of October so something tells me he’ll help make a much bigger impact to creating awareness and helping support the spina bifida community in Central Florida.

Walk-N-Roll for Spina Bifida is a one day walk dedicated to raising funds for programs and services to benefit those living with Spina Bifida. Participants share an incredible experience and take pride in their efforts to make a difference in the lives of families living with Spina Bifida. As a Walk-N-Roll participant, you are our link to the more than 166,000 Americans estimated to be living with Spina Bifida. Proceeds benefit the Spina Bifida Association of Central Florida.

Something tells me you all may have questions on how you can help support Chance so let me see if I can address them now.

HOW CAN I JOIN CHANCE’S TEAM?
If you’d like to formerly join Chance’s team you can visit his team web page on the Spina Bifida Association of Central Florida web site. It is my understanding that the Spina Bifida Association will be giving event t-shirts to team members who join a team and raise $100.

DO I HAVE TO FORMERLY JOIN HIS TEAM OR CAN I JUST DONATE?
If you prefer to just donate you can help me raise funds towards Chance’s team by making a donation. You can still attend the event without formerly being a part of a team. Of course the more of you who join our team and help raise funds, the bigger difference we make.

HOW ELSE CAN I HELP?
Help us spread the word. Share this with others you know through email, facebook, or twitter. We’ll likely also be holding a few little events to help raise funds for Chance’s team and we’ll be sure to spread the word in case any of you are interested in joining us. Don’t forget to join the “event” page in facebook that we’ve created in support of Chance’s team.

I HEARD YOU’RE MAKING “SUPER CHANCE” T-SHIRTS FOR CHANCE’S TEAM, IS THAT TRUE? AND WHERE CAN I GET ONE?
Heck yeah, we’ll be sporting “Super Chance” team shirts. I mentioned it on twitter & facebook earlier today and I quickly got quite a few people asking where they can get them…now.:)They haven’t been designed yet…but once they are I’ll be sure to spread the word and share how you can purchase your own shirt.

Thank you all again for the support. It means the world to me. My family. And my sweet baby boy. You guys totally rock!

Amanda, Family, spina bifida, Updates, volunteer

by Amanda Kern

64 comments

add a comment
link to this post
email a friend

Sweet Isabella

Wednesday, June 29, 2011

Nearly two weeks ago I met with fellow graphic designer, Nicole Morse and her husband to photograph their baby girl Isabella. At just over a week old she was such a sweet little girl. I’m pretty certain you all will enjoy seeing a glimpse of the memorable moments I spent capturing some of her first moments. Nicole, I’m still in awe with your little girl…she is such a little blessing.

Photography

by Amanda Kern

1 comment

add a comment
link to this post
email a friend

Hope’s 10 wishes before she turns 10

Tuesday, June 28, 2011

There’s a movie Hope watched recently where a girl turns 16, makes a wish list of things she hopes to happen when she turns 16 and as happens in the movies…her wishes come true. Hope thought it’d be wise for her to do the same before she turns 10. With  her 10th birthday less than 5 months away she wasted no time this past week making this list that I think will make you all smile. Enjoy!

Hope

by Amanda Kern

148 comments

add a comment
link to this post
email a friend

Four months!

Thursday, June 23, 2011

“We’re so busy watching out for what’s just ahead of us that we don’t take time to enjoy where we are.” ~Calvin and Hobbes

Ah,  yes, leave it to running across the words of wisdom of  Calvin and Hobbes recently to remind me to stop thinking about the many things keeping me busy and weighing on my mind these days and instead pause to enjoy the moment I’m in.

Yesterday that moment brought the realization that Chance is now four month old. Yes. Four. Months. old. *sigh*

I’ll stop trying to figure out how time escapes me and instead I’m reminding myself to enjoy the moment…or perhaps “freeze” the moment I’m in through photography. I decided to try on his panda hat again to see if it still fit…and it did.

Hope agreed to give me a hand trying to get him to sit for a few seconds for a photo. He was so focused on his big sister that he didn’t want to look at the camera.

He was a bit wobbly and began to get fussy. It was getting close to nap time so Hope asked if she could take the pictures and if I’d try to help him sit. As he began to cry we played patty cake. It’s the one thing that almost always makes him smile lately.

It took several attempts and many times singing patty cake before I was able to let go long enough for Hope to take these next two photos. She’s getting pretty good, eh!?

After we took those photos I was so proud of Hope and of Chance. I told him how awesome he did and Hope took this adorable photo of the two of us.

It’s been four months since he was born and many of you have asked me “how is he doing?” or “how’s his back doing?” I thought it was about time we shared another photo of his back so you can see for yourself.

His back has healed well and as Hope said yesterday, “his scar looks good, you can barely see it.” It’s faded quite a bit, but it’ll definitely be there for life…it’s a constant reminder of his spina bifida…but also a reminder of what a strong little guy he is. In four months…

  • We’ve seen this little guy of ours go through five surgeries. His back is doing well. His shunt continues to be functioning as its suppose to. And  his hernia repair surgery went well and is healing just as it’s suppose to.
  • He started out just 6lbs 7oz & 18″ and is now over 13lbs and 23″. Yes, he officially has super cute chunky baby rolls.
  • He now smiles, laughs, and coos. He’s found his thumb this week and now sucks on his hand if he doesn’t have his pacifier. He’s learned to roll over from his belly to his back…but usually only when he’s fussy. And as you’ve seen in photos…he can sit for a few seconds to about a minute at a time.
  • He continues to move his legs and feet which is a great sign. I’m praying everyone will stop asking me “will he walk?” His movement thus far is a great sign but even we won’t know what he will be able to do until the day comes for him to prove what he is capable of. I admit even I wonder that same question. I wonder also how much he can feel in his legs. I am constantly trying to see if he can feel with his legs or feet and based on his reactions at times I believe he does. I suppose we won’t know for sure what he’s going to be capable of until he’s a little older so for now we’ll just keep praying.
  • In the last month or so we’ve begun to recognize that the bladder/bowel issues will likely be unavoidable. We’ve learned that majority of spina bifida patients are likely to endure a range of problems due to the fact that the opening in their back likely may have caused damage to the area that controls bladder/bowel function. Yes, it’s one of the part of spina bifida I hoped to avoid most…but it seems we’re not going to escape it. Thus far our little guy had dealt with constipation which has made him very irritable. After nursing all my children, I am confident it’s not “normal” baby fussiness and we’ve begun to intervene to help manage his care.
  • He’s still strictly nursing and I’m likely going to wait another month or two before we transition to solid foods. I admit after seeing him more constipated in the last month or more I’m a tad bit nervous to see how he does with that transition.
  • We’ve learned he definitely is allergic to latex, which was expected due to all the surgeries he’s been through. Though we knew it was a precaution, now that we know it’s a for sure thing we’ve got to be that much more proactive in his care.

Yes, I can’t believe it. Chance is now four months old. Four months has went by way too fast. Happy four month birthday baby boy!

Family

by Amanda Kern

2 comments

add a comment
link to this post
email a friend

The Myers Twins

Saturday, June 18, 2011

The Myers twins were born at the end of May and I’m excited to finally get an opportunity to share some of their first photos. When they were just a day old Hope and I visited her teacher’s baby boys, Mason & Jackson. They were just so adorable and tiny at just over 5lbs each.

Just last weekend we met with the twins for their newborn photos. It’s the fourth time I’ve photographed a set of twins. It was a fun challenge for me. Typically one newborn can be challenging…but two is always guaranteed to take more time and patience. I’m sure you all will agree that Michelle and Chris have been blessed with two cute baby boys.

Photography

by Amanda Kern

no comments

add a comment
link to this post
email a friend

« Older posts Newer posts »

© 2025 Amanda Kern

| ProPhoto Photography Blog by NetRivet Blogs

F a c e b o o k   f a n   p a g e
T w i t t e r