Cincinnati Children's Hospital

We made it to Cincinnati, at 4 am. The flight was delayed due to issues with the plane. We were all loaded on 50 minutes late, then unloaded to wait for another plane. This was after being stopped at security for the 50,000 dollars worth of drugs that were in our bag as carry on along with needles and such. That wasn't as big of an issue as the fact that my laptop tested positive for bomb materials. I know I'm explosive, but come on...

So, though the first part of the late plane was a blessing, it stressed Solstice out, and she had to self infuse in the middle of the airport. We had been preparing her for this flight for days by pumping her full of drugs it worked! This video makes me smile.     By the time we boarded the flight I had been awake for nearly 48 hours. I ordered a wine, took a drink and passed out instantly. Our friends from Leadville Jessie and Brett live just 2 hours away in Northern Kentucky, and Jessie drove up and took us to the hotel. Thank goodness she's a patient person, as she waited over three hours at the terminal. Friday, Brett drove up and picked her up, and they loaned us one of their cars until the 23rd. Such wonderful people to go out of their way.

We made it to Dr. Jonathan Bernstein at noon later that day and within a few minutes were told that Solstice's symptoms did not line up completely with HAE. He stated that either she has HAE, and something else additional that is creating non-stop attacks, or she has been misdiagnosed. He immediately placed us in Children's hospital.

I feared flying because I know for certain in my heart there is something going on in her brain. She loses her vision, and she has these seizure like things during an attack. They are getting worse everyday, and her attacks are coming on faster and faster. I seriously believe we got here just in time. Mama instincts are powerful things.

This is the hospital where HAE was discovered as a disease. They are testing her for another form of Angioedema called Idiopathic, and our genetic mapping test results should be in by the 20th.

Cincinnati Children's Hospital is a totally different place than most hospitals. This morning Ryan Seacrest was in the Lobby as he just opened a studio for kids to record down there. Daily a massage therapist is sent in to Solstice to help her relax, and parents are also allowed to be massaged. I just finished receiving one.. not a bad perk. They take care of parents as well as children here, and that is a far cry from what we experienced in Denver.

 My team of doctors are focused and caring, and they run in two week intervals, so you don't end up with a different doctor every day. I can see why they are rated so highly, even with just being here a few days.

They treat the mind, body, and spirit here and want to begin working on getting Solstice back to enjoying life. They stated that it's very possible that we could be here for months, depending on what happens. I've been living in the hospital for close to three months already, so I'm getting very used to the concept. It's amazing to finally feel like we are getting somewhere, that these people are actually going to help us. They have the knowledge to do so, and appear to really care, it's like a nice deep breath of clean mountain air after being suffocated with bullshit for so long.

Thank you to everyone who has helped so far, we still have a long way to go, but with your love and prayers, I think we are going to come out on the other side....

Special Thanks to Elli Roustom and Chef Adam for putting together the pulled pork fundraiser. Vail Valley friends, please attend!

or if you can't attend, you may donate online by clicking the link below: https://www.giveforward.com/fundraiser/03g3/help-solstice-get-to-cincinnati