{Celebrating Beautiful} The Beauty of Diversity: a guest post by Megan Nilsen

In blogging for the last 2.5 years, I've written about many different topics, but one theme that has remained constant has been my focus of...more

The Power of Words

I was in Target... in a hurry to find a wedding gift, annoyed that the registry printer wasn't working and flustered by the kids' chorus of asking for snacks or to look at this or that."Is this Breanna (pronounced Bree-Anna)?" a woman asked from behind me."It's Brenna, yes," I responded, and she was smiling and excited to meet her. She was a Facebook follower, she explained ....more

Learning More about Healthy Living

As time goes on and we've noticed some more chronic issues with Brenna's condition - especially her arthritis that greatly affect the joints in her hands and feet (and I assume elsewhere too, it's hard to say right now when she can't express that), I've begun to take a keen interest in more natural ways of healthy living.Alternative medicine is something that has always fascinated me, since I learned about it in my first job as a health reporter for a newspaper. I totally swear by taking oregano tablets to ward off an oncoming cold and won't take anything else!Since Brenna's birth, our lives have revolved around doctors and medicine and other modern medical procedures and findings. And don't get me wrong - she wouldn't be alive or where she is today without modern medicine.But I've also started to explore some more natural ways of living - namely essential oils, changes to our diets and eating, and natural cleaning.And oh man ....more

Connor William turns FIVE years old!

My beautiful boy: We have a regular ritual now, after your bath time. You always ask for it, and I always oblige....more

Cruisin' in style!

There was a little jealousy in our house last week. The kids got a new truck before Daddy got a new truck. The new Step2 Ford F-150 Raptor truck was just released - our awesome blue version is a Sam's Club exclusive! ...more

Preparing to transition to the school system

Brenna's big 3rd birthday is looming in less than 4 months, which means one thing in the world of "special needs"… transitioning from the state's birth-age 3 program (Early Intervention in our state) into the public school system for services. Last week, we had our first such meeting to begin that transition, which will also bring a couple more meetings in the next few months - to create an IEP or 504 plan for Brenna, to evaluate her for therapies that she will have at the school, to figure out exactly what services she will quality for.This is a whole new world to navigate and one that we've been trying to prepare for. We selected our new home specifically for its school district, and we visited the elementary school last spring, met with the principal and brought them brochures of information about ichthyosis from FIRST.During the FIRST family conference, Evan and I attended a breakout session about education and the school system, and even though it felt a little early, I'm so glad we did it because it got us thinking about things that hadn't even crossed our minds.Sure, we knew Brenna might need an aide and other assistance…but we didn't even consider things like making sure the school bus has air conditioning, or otherwise coming up with alternative transportation ....more

Getting Personal with Target up&up - AND a $100 Target giveaway!

I am a nail biter. I've employed various tactics to try to get myself to stop, and all usually work temporarily…but then I'm thrown back into gnawing on my nails when I get a little stressed or annoyed. One thing that always seems to help is having my nails painted. Which is a problem…because what mom has time to paint her nails? ...more

Friday Favorites: September 5

The temps are predicted to dip down into the 70s this weekend, and we. are. THRILLED.Tomorrow's plans include opening the windows, putting on the Illini football game and getting some soup on the stove ....more

Big Tube Wean: Month 6

It's been two months since I had to blend up a batch of fruits, veggies, protein and grains, and divide it for the week.It's been two months since we've seen this guy. It's been two months since we've ordered special formula and mixed it up for a tube feeding.Two months that Brenna has been eating and drinking COMPLETELY on her own.TWO MONTHS.It's been long enough that her GI doctor actually uttered the words "take her tube out" and "maybe in six months" in the same sentence. I quickly pulled back the reigns and said "I'm not ready to think about that yet!" and she laughed.I do still think we have some big steps to take before I would even entertain the idea of removing Brenna's g-tube ....more