It’s so hard to update Reagan’s status within a timely manner b/c so many things happen on a daily basis and we have to concentrate on absorbing the info and processing it…we’ve barely been able to discuss how all of this will look once we get home. So please forgive the re-cap from earlier in […]

I know I’ve mentioned the meaning of Reagan’s name before, but it’s worth mentioning again. Reagan means “little king” but some translations have it meaning “noble” and her middle name, Elle, means girl. She is quite the noble girl. Picking a name and meaning we liked was super important to Rob and I. I had […]

Last night was the first night of Reagan’s life that Rob and I slept under a separate roof than our daughter. I feel guilty and terrible, but Rob and I needed some sleep and the Ronald McDonald House had a room for us to do just that. I woke up at 5 a.m. angry and […]

Being in the hospital for eight days with my daughter has taught me a lot of things. I really don’t know how to begin this post, but as I write this on the sixth night of being in the hospital, I can tell you that we are ready to go home. With Reagan’s condition, Glutaric […]

As Reagan’s first birthday approaches, I have so much to reflect on over this past year. Looking back, I don’t know how we did it. She has never been sick, even though I was sick for about a month, and Rob somehow had a fever for a brief moment. We’ve figured out her food, even […]

I am sitting here with hot tears just rolling down my face.  Reagan started foods…and it is really exciting. But my baby eating foods is not like your baby eating foods. Reagan’s dietician Sandy gave us menus to work with as Reagan starts food…we have a certain amount of Lysine Reagan can have a day. During […]

The other day, someone found my blog whose child also has a metabolic disorder.  She linked to her blog and I thought…hmmm, do I want to read what their child has? I skimmed the blog titles and read a few, looked at a few pictures, all seemed normal, even though the child had a liver […]

I have to say that Rob and I love Nemours…and we go there so much so I’m glad we do love the hospital and the team of people that care for Reagan. The newest issue of the Nemours Together Magazine features Reagan’s story.  I’ve put the article below so you can see it.

Seriously so proud of my little girl. Just something I’d like to share, Reagan Elle means “noble girl” and she’s already starting to live up to the meaning of her name.  I don’t know what God has in store for her or for us, but a friend of mine at church recently said to me: […]

The title of this blog is a complete oxymoron, but there’s good reason.  Let me explain… In my mind, I feel the need to control every situation for Reagan.  Who am I going to let be around her…who have THOSE people been around…and so on and so forth.  You would call that a tight grip, […]