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Lorelei’s birthdays will always be a bittersweet thing for me. This year, due to our crazy start, we had a nice family dinner on her actual birthday, but decided to postpone the celebration until the spring. When it was warmer and there were less cold and flu germs floating around. HA! For those who remember…
This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates. It was one of those days… Definitely nothing compared to a day in the PICU, but just a normal rough day as a rare-disease mom. Oh how I pray that one day a doctor…
This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates. I found myself sorting mail last night. Oddly, there was more for Lorelei than for the rest of the family. And these were not hospital letters or appointment confirmations. They were greeting cards. As…
This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates. We. Are. Home. Let me say it again! WE ARE HOME! Thank you Jesus - all THREE of us are home! Michael may be sick, I may have pulled my back out, our nurse…
This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates. There were a few important updates on her Facebook page between this blog post and the previous one… like the one when she was extubated!! Yesterday Lorelei slept the entire day. Around 430 I…
This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates. I thought NICU life was hard. I am honestly thinking that PICU life has it beat. Today was yet another roller coaster after a tough night. We lost another PICU neighbor and Lorelei’s vitals…
This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates. I know so many of you popped over to this page or my personal page yesterday hoping for an update… the thing is, Lorelei is what I will call “critically stable” and…
She made it through the night. Far from stable but she made it through the night. Many people have asked what they can do for us right now. And quite frankly, I have no clue. I’ve never navigated anything like this before. I feel like I am living a nightmare that just keeps getting scarier…
Today. Sigh. Today Lorelei crashed. And our world continued to crumble around her. In a dark hospital room. 12+ hours from home. I don’t know how it is almost 7PM right now because it feels like I just woke up, after a handful, of very much needed, hours of sleep. All of us finally slept….
Once upon a time we were supposed to go on vacation… I spent all last week working a builder show in Orlando, FL. Our plan was to head to the Florida Keys Friday morning to camp and check the waterfront restaurant called Lorelei Restaurant & Cabana Bar off of Lorelei’s bucket list. (I mean, they even have…