Remember this for yourself. Remember this for those you love. When life hands you crisis after crisis after crisis, there is no time to fall apart, there is no opportunity. You simply have to keep going and going and going. And then there’s a calm moment and a new crisis doesn’t immediately descend and you … Continue reading Fall Apart
It’s Been a While
Two and a half years. Wow. Sorry about that. Sort of. Not really. I mean, sorry I disappeared on everyone for so long, but I needed it. Four years ago, we were still in the midst of trying to figure out Evie's bowel issues. Three years ago, we were prepping for her Wish Trip as … Continue reading It’s Been a While
Grateful for the Catastrophic
Two years ago, we were in the hospital as Evie struggled with an intussusception (where the bowel telescopes inside itself and gets stuck). It was a hellish time full of fear and frustration and trauma that led to months of progressively worse issues. And I’m grateful for it. Not in the happy way, but in … Continue reading Grateful for the Catastrophic
Sorry, we've been absent for quite a long time. We've had a fairly uneventful few months. We did have to cancel a surgery due to pneumonia, but she came through it fine and we'll try to reschedule the surgery for the spring sometime. It wasn't anything immediately necessary. Christmas was nice and quiet. Well, not … Continue reading The Beginning
Growing and Thriving
How different things are from last year! This time last year we were in the hospital still trying to figure out what the problem was with Evie's intestines. Dark days. And now! Now she's a giant! And she's doing so great! Her first four years, she wasn't even CLOSE to be on the growth charts. … Continue reading Growing and Thriving
Two Days Left
Just two days left on my tshirt fundraiser! https://www.booster.com/all-that-hath-life You can read more about it here.
Support the CHARGE Syndrome Foundation!
Hey all! I decided to do a quick little shirt fundraiser for the CHARGE Syndrome Foundation! All proceeds go directly to the foundation to help support those with CHARGE syndrome in a variety of ways. Hopefully down the road as things with Evie settle even more, we'll be able to invest more time and energy … Continue reading Support the CHARGE Syndrome Foundation!
Why Our Special Needs Child Has Secondary Medicaid
We've learned a lot about insurance over the last several years and I just thought I'd share a bit of that side of things. I had NO idea about most of this before Evie was born and I'm guessing that's true for most the population. And I also know we're generally hesitant to share this … Continue reading Why Our Special Needs Child Has Secondary Medicaid
CHARGE Conference 2015
So one of our big summer adventures back in July was attending our very first CHARGE Conference. This happens every 2 years and is a gathering of those with CHARGE, their families, and professionals from all over the world. It was AMAZING! And overwhelming. That, too. But mostly just amazing. Most of our time was … Continue reading CHARGE Conference 2015
Airway Update and Giggling
It's been a while! And for good reason: we just haven't had much to update. I'll write up a post about some of our summer adventures, but we had no hospital stays, no surgeries, no major medical concerns of any kind and it.was.amazing. But we can't walk away from it all forever, so we headed … Continue reading Airway Update and Giggling