Last Tuesday we took Juliet into our pediatrician, we were then sent on to Omaha, this time just for a short stay (2-4 days) or so we thought, Juliet always has her own ways of being defiant. Within hours of being at children’s, she was moved down from fourth floor to PICU, spent the day in PICU, then that night wanted to keep the medical team up on there training and gave them a workout for a few hours. They were great and got her stable. At this point she is still in PICU and has been sedated for a few days, she is slowly doing better with the hopes of getting off of the vent tube in next couple days, but as we all know, Juliet sets her own schedule.
We have been receiving overwhelming support from everyone, Juliet has been in three papers recently and a fundraiser is set for this Sat., Feb 28, which is also, International Rare Disease Day. It is very humbling how many people truly care!
On a side note, there are posters all over the hospital on how they were voted best hospital for almost every area of the hospital (which I would not for a minute, disagree), but I think a category they should add is, Best Hospital for Family Support.
We stay at what they call “The Rainbow House”, it’s pretty much a hotel for the immediate families of children that are impatient. The workers there have always been good, but the last couple days they have risen to the great level. Today, Feb 22nd was Juliet’s big sister Piper’s Birthday, she turned 6. We asked if we could use part of the Kitchen area for the party and they agreed to let us, keep in mind we live over 4 hours from Omaha, anytime we asked for something they would just tell me to go enjoy your family we will take care of it, it was very sweet of them to go out of their way for our family. So for that reason they are getting my new award, even if it’s not official.
With all of our great Dr’s, nurses, and all other healthcare pros, here’s to hoping, we can soon get off of the Beaten Path!
Also, HAPPY BIRTHDAY PIPER!!!
All these links are from my phone so they may only work on mobile devices, I haven’t tested them.
Click to access Arnold_Sentinel_2-5-15.pdf
Jailyn’s class is organizing the benefit this coming Sat. Feb, 28 at the Arnold Community Center. A go fund me has also been set up.
RareJul 
We’re so glad she’s getting the best care, you guys need taken care of just as much as she does! Love you all! Hope piper had a great party!
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The links worked for me. Thanks for posting them. With all this press coverage you’re getting, I feel like I finally know someone famous. Happy Birthday to Piper!
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