A blog about us. our lives. our struggles. our victories.

Rob and Anne-marie

7/31/17 – surgery day The day of my surgery I woke up right to my alarm clock at 5 a.m. and moved pretty slowly through the morning. I wasn’t in the biggest rush to get to ORMC, given what was on the agenda, but when I got there, I was greeted with my praying posse […]

AM's Brain Surgery

The thing mamma never did tell you is when those days would come or how they would make you feel. Like today. All I know is I left a therapy appt for Reagan and ended up at home in tears. The dishes were piled high, I looked at a massive pile of clean clothes on our […]

GA-1

This past Sunday we went to church which was a pretty deal because we haven’t been in over a year and a half. Let that sink in. Eighteen months, no church with community. That’s 547 days and a lot of Sunday’s longing for a place our entire family could go. When Reagan had her crisis, we […]

God

You know how the Bible says not to worry about tomorrow b/c today has its own problems? Rob and I woke up early today. Thursdays are early days anyway b/c Reagan has therapy first thing in the morning, and today was also early b/c I had to show property first thing. We headed out the door, […]

God

We’ve had some pretty great weekends recently. Of course our life is not Instagram perfect, staged and always lovely, I’ll never pretend for a moment that it is, but we’ve stretched our boundaries, moved our comfort zone further out and have started exploring the world a bit more with Reagan. Last weekend we went to the […]

Life

“Be exalted, O Lord, in your strength; we will sing and praise your might.” – Psalm 21:13 the very next verse “My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? O my God, I cry out by day, but you […]

God

After Reagan had her metabolic crisis (due to her genetic disorder, Glutaric Acidemia Type 1 or GA-1 for short), she had an MRI…and while we were waiting for the results, I just knew something was so very wrong. When Reagan woke up briefly, probably 18 hours after her seizures, she smiled but was so limp that […]

GA-1

What I mean by that title is…as a family, let’s all go to bed at 8:30 p.m. and…SLEEP! Tuesday Reagan had her Nemours appt. and b/c she’s doing well eating (she has about 150g of food/day) and b/c she’s growing like a weed, and b/c she’s been able to tolerate seven oz. of formula via G-tube […]

Adoption

On Thursday Reagan was scheduled for a 24-hour EEG. Rob and I had been dreading it ever since it was scheduled. So much so that we rescheduled it for a later date. But Thursday finally approached and we geared up to go. We brought the bouncer, the pak and play, her high chair, a million […]

God

The LORD says, “I will give you back what you lost to the swarming locusts, the hopping locusts, the stripping locusts, and the cutting locusts. It was I who sent this great destroying army against you. – Joel 2:25 I am SO excited to write this update! Tuesday, Rob and I drove to Jacksonville and […]

GA-1

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