Happy Freakin' December!!!

Although we are only 4 days into December...it has been a wild and crazy month already!! I can only hope that the month gets better from here. We have absolutely been having it out with Medicaid and our waiver program. I made a call down to Richmond to see if Noelle was eligible for more hours/services/therapy/ etc last week. To make an extremely long story short, one of the ladies down at DMAS (Department of Medical Assistance Services) thought that Noelle was not fit for the waiver we are currently in. And...because my mom and my mother in law were getting paid by the state and doing medical things (which we just thought they were "clocking out" for)...they tried to accuse us of Medicaid Fraud. We had no idea that we were doing anything wrong. This lady wanted us to get on the Tech waiver and she wanted it done...yesterday! She basically told us that if we continued doing things they way we were...we were going to be committing medicaid fraud and our medicaid could be pulled from Noelle.

I completely realize that I am speaking Greek to many of you. But the bottom line is the waiver qualifies Noelle for Medicaid. Medicaid pays most of if not ALL of our out of pocket medical expenses. Our private medical insurance covers $5,000 worth of home equipment per YEAR. Noelle goes through $6,000 per MONTH in just oxygen equipment. Thus, losing medicaid would mean that we would be forced to institutionalize Noelle. Then, if that happened...most likely...I would have to be institutionalized in a mental kind of way!! :)

So, Needless to say, Ross and I were stressed to the max. Not eating or sleeping!! We talked a lot with several advisers that helped us make a decision and then we finally told the lady at DMAS that we really did not want to be on this Tech Waiver because we did not feel it was in Noelle's best interest to have complete strangers in our house for 16 hours per day. We told her we wanted to stay on the EDCD waiver which we are on now. She tried to threaten us that our hours would be reduced and tell us that it was not the right decision. Whatever! She can have her opinion all she wants....however, she doesn't have a special needs kiddo at home! She has no idea what Noelle looks like, she has no idea how cute Noelle's smile is when she plays! Quite honestly...I think she could care less.

The bottom line is that things will relatively stay the same for Noelle. Ross is going to have to work a lot from home until all of this blows over. I had to take off yesterday and today to handle these issues. There is so much red tape with government funding and programs. Having a special needs child should be enough to handle, let alone having pushy caseworkers that think they know what is best for OUR child. We have submitted all of the necessary paperwork and will get an answer from the state in about 2 weeks. We are crossing our fingers until then!

Not to mention, the past few days have not been great ones for Noelle. She is having a really hard time with the coughing/gagging/retching episodes which she has been starting to desat from. I have no idea what the deal is...but I'm having a really hard time getting the nutrition and liquids she needs in her each day. The only way to stop these episodes is to stop her formula going in....which puts her further and further behind for the day. I called the pulmonologist about this today and he was able to call the GI doc and get us in faster. So...we'll see. Noelle will see the GI doc week after next. Hopefully, she quits this coughing craziness and she is okay until then.

I am absolutely exhausted and drained after this week. I have never been so stressed out before about fighting for Noelle. I still think about that lady saying "Medicaid Fraud" to me....and my heart just sank. We are very honest people and will do just about anything for the good of our kids. However, trying to cheat a system which literally feeds our daughter and gives her the air she breathes is ridiculous!

On a great note, our Christmas Tree is up, the house is decorated and the weatherman is calling for snow tomorrow!! Sorry for the ranting and raving....I'm not sure if this post makes any sense at all!! Hope you followed....haha!


Stacie :)