Category Archives: Jaylen

5 months.

“In the book of life, the answers aren’t in the back.” ~Charlie Brown The last two weeks have been pretty challenging but there isn’t much that stops me from moving. Perhaps this past Friday was a full moon or the days all the planets were aligned and everything was meant to be chaotic. Yes, everything. […]

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Thanks to spina bifida…

“What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others.” ~Percicles When I first learned Chance had spina bifida I recall thinking it was some awful curse. Like the worst thing in the world that could possibly happen to me and to my family. […]

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July 22, 2011 - 10:30 am

Colleen - Thanks, Amanda, for the sweet words, and the wonderful photos!

July 22, 2011 - 11:08 am

Cassie McLelland - So jealous! I would love to have been there, too bad I live in Texas. Beautiful photos by the way.

July 23, 2011 - 1:30 pm

Laura Tellado - AMAZING post. Mami cried reading it.

You can ALWAYS count on me for support, and I hope to be there for you and your family as Chance grows up to be an intelligent, HANDSOME, independent, compassionate boy. I love him so much. And you. <3

July 25, 2011 - 4:08 pm

Lora - There’s nothing better than getting together with others who “get it”.

My baby’s latex allergy

It’s been just over a week since Chance’s last surgery and he’s doing quite well. He’s had a few fussy moments but he continues to be one tough little dude with the most adorable personality shining through, despite how much he’s been through. Here he was just a couple days ago…adorable, right!? The kids were […]

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June 16, 2011 - 3:56 am

Amanda Ridding - Yes that pesky latex allergy.
I’m so sorry that Chance reacted to those bandaids! But look how grown up he is! Has it really been 4 months! Wow!
I have gone over and over those stupid lists!
Some of the things that I found that I watch out for are bandaids, balloons, gloves, nipples/pacifiers. The rest I keep in mind. But there are also elastics (on clothes) and latex prints on shirts.
Every time we are in the hospital I make sure everything is latex free, and for my c-section, I even made them do it as a latex free set up.
Yes it is everywhere! The bane of my existence is latex!

There is something about spina bifida that makes our kids more succeptible to this allergy. Because it still exists even with little to no exposure.
Good Luck!
He is ADORABLE!!! They all are. And love the shirt!

June 16, 2011 - 4:24 pm

Gretchen Soares - Latex SUCKS!!!! And it is everywhere :( But you will get the hang of it and it will just become life!

My biggest warnings to new latex alergy moms are: NEveR forget it is a progressive allergy, each time they are exposed the risk and reactions can get worse! Anything that sticks to the skin, check. Dang diaper can have latex so be careful there! And SMELL everything that you know has latex in it as you are learning. My son is now almost 11 (HOW did that happen?!) and I can wlak into a room now and smell if there is latex in it…. great sense to have when being protective momma bears to our gifts!

I can’t believe how big Chance is getting and how fast it seems to have gone! And I also have to say that you seem to be rolling with the punches really well! Everyone uses scare tactics on new diagnosed people, but really, everyone has a cross to bear, and at least SB kids are danged cute! and super brave kids :)

Lots of updates

“A man’s worth is no greater than his ambitions.” ~Marcus Aurelius This past Tuesday Chance had his fifth surgery to repair his umbilical hernia that he’s had for over two months. Though Jason and I sent some updates briefly through facebook the day of his surgery I know many of you are still waiting (and […]

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June 10, 2011 - 12:45 pm

aida - You’re still awesome to me!!!


“If we take care of the moments, the years will take care of themselves.” ~ Maria Edgeworth I’ve found myself taking less photos most days lately and instead enjoying the moments with the kids. My kids have a camera pointed in their face so often that they often complain about having their picture taken. In […]

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May 12, 2011 - 9:10 pm

kristy pennino - 11 months already. wow. i just can’t believe it! :-)

May 12, 2011 - 9:10 pm

kristy pennino - duh! i meant to type weeks just then. ;-)

May 12, 2011 - 9:16 pm

Amanda Kern - *phew* …don’t rush him growing that fast Kristy!!

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