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

Rob and Anne-marie

Earlier this week I had a Facebook memory come up…some memories are horrible, and they’ll always be horrible. I don’t like the reminder, Facebook. This was the memory. It’s a blog from two years ago, and in painstaking detail, I write about our eight day hospital stay. When I read it, I think: “maybe that’s where […]

Rob and I took Reagan to the ENT today b/c of the multiple ear infections, constant fluid in her ears and two failed hearing tests. After a check today, surprise surprise, she has fluid in her ears. They also asked if Reagan snores and we said yes, so we get a bonus surgery of adenoid […]

Happy birthday, Reagan. Three years ago, we took this photo…it was before we knew anything was wrong with your newborn screening. A few short hours later, we received a call that would change our lives forever GA-1. We worked so hard to never get you sick… …but one day, you got sick. And we did […]

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 […]

I went to the Dr. the other day b/c I was having chest pain. I know why. I was stressed to the max having to deal with all of Reagan’s super expensive medication that she was close to running out of. Oh the joys of switching insurance co’s (her insurance co. last year, went under). […]

Haven’t been in a writing mood lately. The last time I wrote was after Thanksgiving, and I couldn’t publish it because it was just a hard post to put out there. I clicked ‘publish’ today and I hope you read it here. For the past month, Rob and I have been going back and forth […]

We saw Reagan’s new neurologist a couple weeks ago. We really like him. As he was examining Reagan he asked us what the MRI said since he didn’t have the records yet, and we let him know that the entire basal ganglia was damaged. He seemed to be disbelieving of that. “Both sides though?” “Ummm…Yes? […]

One thing I’ve learned is that you need to wisely pick the battles you have with a toddler. For me, the nap battle was a losing one. So I ended them. My friends thought I was crazy…WHAT?!? No more naps? [insert cry emoticon for several rows of text]. It wasn’t worth it anymore. Sometimes we’d […]

One of Reagan’s doctors is moving (waaahhhh!!) He’s Reagan’s neurologist, and one of our three favorite doctors; let me tell you why. You’ve all heard about the things we were told by one of the other neurologists within the practice: “You need to make her comfortable, she won’t do anything, she won’t walk, she may not learn, […]

We just got done with our annual 24-hour EEG and Reagan did awesome. Remember last year’s EEG? We were stuck in a tiny room, in our Dr.’s outpatient facility, it was 80 degrees, we had to share a community bathroom with 12 other patients, Reagan exploded out of her diaper in a bouncer and she […]

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