Tulips and Rembrandts

Last week one of Ava's therapists commented on my tidy house, and I laughed when I told her, I can't take any credit for it! I put...

About a year ago, I took a short break from my bed rest and sat through the worship time at our church's Easter Service. I asked God to...

Ava is 10 months old. She is beautiful. Her chubby cheeks are kissable. Her hair has a sweet curl that compels us to rub her head at e...

We've been in a bubble these past few weeks, and that's been made possible by Ava's stability on her steroids. Since we maximize...

It has been one week since we confirmed Ava's diagnosis and then increased her dose of steroids to try get a little more awake time wit...

I never tire of the manna metaphor . God continues to amaze me with his willingness to provide for each and every twist and turn on our j...

Ava's been doing well since coming home. While her sisters, her parents and her nanny have been dropping like flies around her, she is s...

Ava has been having a more difficult time breathing over the last few weeks, and things seemed to get worse tonight.  A few hours ago, we ca...

Ava came through her MRI beautifully. She managed to undergo sedation without needing a breathing tube, and that made her recovery much, muc...

Tomorrow, (Tuesday morning) is Ava's MRI. I'd be lying if I said my heart wasn't pounding in my chest.  Please pray for a smoot...

How many times in the last 6 years have I wished I could have eat while sleeping in order to save time?? Ava's got it down to a science!...

Ava's got a big week ahead. This picture is from almost two weeks ago. That was the last time she was this alert. She's spent much...

Last week, after 5 hours at the ophthalmologist, we confirmed that Ava has cortical visual impairment. While her eyes are functioning, her b...

We're not sure what it means, but we'll take it! We love our little girl having awake time!

Home today! Still waiting on discharge paperwork, but we've got all her new prescriptions, we've received training on her Broviac (t...

On Saturday morning, Matt and I finally felt confident enough to choose the next steps in treatment for Ava. We won't know more about th...

Ava did not have a great night last night. Yesterday she dropped her heart rate for a few minutes, overnight it was her oxygen saturation an...

She's waking up. She's making some eye contact. She's cooing. She's showing us her dimples and seems like she wants to smi...

Now we're just waiting to see her in the post-operative suite! Thank you for your prayers and all the emails, texts and comments here ...

Tomorrow morning at 7:30am, Ava will be wheeled back for a "stealth" MRI, followed by a brain biopsy. She'll need to be sedate...