This is a HUGE update in Life Of I 2016

Many of you who read are well aware of my daughter and her troubling medical issues. Enter January 22nd. My daughter is going in for a tonsillectomy. A simple quick procedure but because she recovers so hard from anesthesia they decide to keep her over night just for observation. That night as expected she’s on a low flow of oxygen and she starts playing with her toys but it’s been a long day and we all go to bed. The next day all hell breaks loose. She’s still sleeping a little cranky nothing we didn’t expect. We notice she’s starting to breathe a little raspy. We have RT {respiratory therapy} come take a listen. At this point we’ve been told we are moving to the regular PEDS floor. RT comes in and says it’s most likely due to her tonsils being removed so there is some swelling. Alright makes sense. We move over to the PEDS floor. 10 minutes there and my daughter stops breathing. her face turns blue and we have to have the quick response team to help get her to breathe again. They get her to breathe but she still raspy not the same and she’s just asleep. We get transfered right back to the PICU. So the doctors assume that everything that is going on is purely her recovering harshly. Well day two goes by. Then day three. Then day four. At day seven she is still not awake. She’s on a high flow oxygen mask. She can’t breathe on her own and she just can not wake up. She wasn’t in a coma if thats what some of you were thinking. They run an EEG on her because of her pre existing seizure conditions. Nothing. The seizures are just not happening apparently. They do blood tests to check for viral infections. Nothing. Finally a few days go by and they tell us they tested her for her lipase levels. Which is her pancreas function. Turns out she has pancreatitis. They believe that her seizure medication is literally causing her pancreas to fail. The solution you may ask? Taking her off the seizure medication. A slow ween but still removing it from her. The next two or so days we see minor improvement in her. She’s still sleeping most of the day. She just lays there. Then she has a seizure. Unlike anything we’ve ever seen at all. It started out like one of her seizures but then quickly turned into a facial twitch her eyes bulging and losing complete control of her eyes. I’m talking her eyes were massively dilated you couldn’t even see color in her eyes and they were pointed in two different directions. At this point she has had two EEG’s. Nothing. An MRI. Nothing. And we know what we saw this was seizure related and it was new. And not in a good way. So we are approaching the end of this hospital stay. They decided to run a 24 hour EEG. Per our suggestion. After about three hours the neurologist comes in. I know you can’t tell but I am crying now. The neurologist comes in and tells us that the EEG is showing that this new behavior is not seizure related. So we know nothing. She then informs us that Emelyse being tired all the time not being awake and being irritable just might be her new baseline and it seems its a harsh progression of her seizure disorders and then she told us what every parent never wants to hear about their child when in the hospital. “All we can do is try to make her comfortable.” My daughter. Is dying. This is all incredibly difficult for me to write. After that they send in a team they call something different but is essentially hospice care for your child. They do a few more blood tests and tell us that they still don’t know what happened with her but that there is nothing they are doing in the hospital that we can’t do at home. And just like that we are sent home with our child. Who is officially terminal. We aren’t just going to let that sit though. We’ve got one more hope. Medical Marijuana. It’s our last hope. We cant just let her die.

We reached out to local business’ here. And one of the business started a fundraiser for us to help fund the trip to Colorado. Where the Medicinal Marijuana is available. I am going to post the link here just so you all can see. If you’d like to share we would really appreciate it.

https://www.gofundme.com/pie-a-month-for-em

After this we got another local business to share the story and the fundraiser and they gave us a 200 dollar gift card so we won’t starve. We’ve now gotten a bunch of stores here to share her story and the fundraiser. My wife was interviewed on the news. Which I will link here as well.

http://www.kctv5.com/story/31204359/family-receives-support-during-battle-for-daughters-medical-marijuana-treatment

Check the story out if you want. We were then interviewed by the local newspaper.

http://wellcommons.com/news/2016/feb/18/marijuana-refugees-lawrence-family-hopes-move-colo/

They did a really good job on that story and because of the newspaper coverage the fundraiser skyrocketed. We were also contacted by another TV station. We had that interview today.

http://www.kshb.com/news/local-news/marijuana-refugees-kansas-family-considers-moving-to-colorado-to-find-a-cannabis-cure-their-child

I don’t know if I even write in here enough for any of you to care anymore about my life but please share the fundraiser. Or not. It’s ok if you don’t. I just want everyone to know what is going on with my life and family.

Later Everyone.