It is Saturday night, and I've been scrambling all day to get packed and ready to go. Up until yesterday I wasn't sure if our vacation was going to happen. And I guess that is pretty typical of how life with a disabled and special needs child is.
Daniel had surgery to have a Baclofen Pump placed inside of him, on June 4, 2015. This is a procedure that helps to reduce spasticity in the muscles. Daniel's spasticity issues were getting so intense that I wasn't sure if I could manage him on a plane, etc. It was time to move away from the "oral" baclofen medicine, and to what they call "intrathecal Baclofen" . so off to the hospital we went for the surgery.
Everything went well, and aside from a couple of complications, it seems to be working really well.
This morning I had some sort of a mental meltdown. I'm not sure what it was really. But as I sat staring out into my backyard I felt tears streaming down my face. This is journey is a tough one, and as optimistic and positive I try to be, and try to move myself towards being, sometimes it still just downright sucks.
The State of CT Husky medicaid people are trying to take all of Daniel's skilled nursing care away. It's complicated, but essentially some person at a desk somewhere in Hartford has looked at Daniel's file and decided he does not qualify and is not medically qualified for on going nursing intervention through out his day. They are proposing to end it on June 27, 2015. Daniel DOES received nursing intervention all day long. They are making me jump through hoops like a monkey.
So here I lay, falling asleep while I write. Wanting so badly to spill out some devine words of wisdom, but I can just say that we are on schedule for vacation. I'm really really sad to be leaving my Henry behind, but I think a break will do me great.
Great. as I wait to find out our fate with the nursing care.
I am also very thrilled that my You Tube channel has hit over 1000 subscribers. I hope that if you are reading this, you are also a subscriber. I think its weird, but I honestly have NO idea if any of my family members (except my mom and sister) actually follow us there. Most of the comments, and interactions are from the You Tube community. Perhaps people are just still so new to the concept of vlogging. I'm not sure.
Time to get some sleep. I have to wake up at 3am. Yes I said 3 am.
Olease keep coming back. Life is great.
Julie Hasselberger June 20, 2015
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