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

Rob and Anne-marie

This past weekend Rob and I decided to do things we normally would do. But we like to start our weekends with a bang…the kind that makes you wonder if emergency surgery is in the future.  Saturday morning started off great, until about 8:30 a.m. when I went to pull Reagan out of her high chair […]

I am SO tired, but I am forcing myself to write this blog b/c I have to share the good that we experience. Today our family unit went to Nemours to see Dr. Ried. She is the Division Chief of Physical Medicine and Rehabilitation at the Nemours hospital, and our genetics Dr. had her squeeze us […]

I think it’s inevitable for Rob and I to play back the 13 months of  Reagan’s perfect health. We both ask ourselves, “did we do something wrong?” Rob beats himself up over the food…he prepared the menu most days, he made her formula…but we were following everything to a T from our genetics Dr. and […]

Today Rob and I went to several places with Reagan to see what kind of therapies and options for care we had available. It started with a trip to the medical day care about 30 minutes from our house and we weren’t overly thrilled with that option or location. While it’s run by a competent […]

Friday morning (4/11) I had Anne-Marie post an update on Facebook…we were transparent with everyone on how were feeling after meeting with our geneticist and getting the preliminary report of Reagan’s MRI, however, I did not post my thoughts that evening after we had met with the neurologist and he reviewed the MRI with us. This […]

Rob and I came home with Reagan on Saturday after being in the hospital for 12 days. We needed those 12 days in the hospital and I can honestly say the past two weeks have been the hardest weeks of my entire life. The marriage vows “for better or for worse” are definitely being tested right […]

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 […]

Rob and I take about 3-4 walks a day with Reagan around the big pond at the Arnold/Winnie Palmer hospital complex. During the last hospital stay I remember telling Rob, “It would stink to be one of those families who walks around this pond as the outing of the day…I don’t want to be that […]

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 […]

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