Category Archives: Jaylen

Ready. Set. Go.

“Half our life is spent trying to find something to do with the time we have rushed through life trying to save.” ~Will Smith The summer has flashed before my eyes…again. Not so sure how that happened…seems like every year it flies by even faster. Here I am nearing the end of my break between […]

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August 23, 2011 - 5:03 pm

Pepper - Amanda, honey, these are great.

Another shunt dilemma

“Reality is that which, when you stop believing in it, doesn’t go away.” ~ Philip K. Dick I know many of you have been waiting most of the day for an update since I brought Chance to the E.R. It’s been a crazy day and I’m finally finding a moment to share just how hectic […]

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August 21, 2011 - 10:15 am

Shanna Burgoyne - Love you, so happy everything is somewhat okay! I love the picture of Jaylen and Chance, one of my favorites!

August 21, 2011 - 11:21 pm

Joyia - I think you’re the only person that could ever take absolutely beautiful pictures even in a hospital! Amazing. And I’m very glad to hear that Chance is doing ok.

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Here I am.

What a week it’s been. This time last week I was getting ready for surgery thinking it wouldn’t be that big of a deal…here I am a week later. It’s been a much tougher week than I imagined it would have been. I’m finally getting a little caught up with things…like photos. I posted photos […]

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August 17, 2011 - 1:39 pm

Emily - At 19 weeks pregnant I had my ultrasound and was ecstatic to find out we were having a baby boy. But then I was crushed to find out our little boy had a neural tube defect. Not knowing anything about Spina Bifida or Hydrocephalus my mind went to the worst place possible. In doing online research my mother-in-law stumbled upon your website. I read your blog like a freak. Your and Chances story really gave me something to rely on. And really let me know what to expect, which I believe is very important because I had no idea what we were about to experience. My little champ will be 4 months at at the end of the month. He has been through 3 surgeries (one on his back and two shunt surgeries). He has great movement in his legs and feet and at our last Dr appointment they said his muscle tone was also great and he would exceed all our expectations. I am very hopeful for our little guy. So to show a tiny bit of my appreciation for you sharing your story with the world I voted for you. I cant thank you enough for giving me hope for my little boy. Thank you, Emily

Chance’s 1st spina bifida clinic

“Fear defeats more people than any other one thing in the world.” ~ Ralph Waldo Emerson Since just before Chance left the NICU back in March we’ve been anticipating this day. Admittedly the anticipation came with a mix of hopes and fears. We are quite fortunate to live in Orlando so close and are able […]

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August 8, 2011 - 10:27 am

Kim - I teared up reading your post. I remember so well our first clinic evaluation, and the fears and hopes I walked in with. They also told me that Madison would walk, and I cried right there with relief for so many concerns that I had been reassured about. Yes, we have issues, but we also have hope and anticipation of wonderful things to come!

The last 48 hours

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths.” ~Elisabeth Kubler-Ross What a whirlwind this week has been. Typically this week is one of the busier weeks of the year for me as we’ve approached final […]

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July 31, 2011 - 1:29 pm

Heather - your LO is soooo adorable!…you are truley a strong woman! my daughter has Sb herself she is now 2years old and im so lucky that she has only needed but one surgery after her birth! KEEP FAITH and stay strong! ps i love all ur pix they really grab the moments

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