Thursday, January 16, 2014

Help! I am stuck in red tape

It's been a frustrating week. I am so busy at work I can barely breathe, but that's job security. I come home exhausted. I am to tired to work out and all I want is my wine and my bath which makes me fluffy! My husband and I are at each others throats. This happens in a normal marriage but combine a severely handicapped child in the mix and you have some real issues. The divorce rate for a family that has lost a child or had a child handicapped is 85%. Mike and I know this rate so we work hard to make things work. However, sometimes the stress gets the better of us. We get tired, run down, we don't get exercise like we used to, our clothes are frumpy, and we never sleep. However, we count our blessings and do the best we can.

Part of my frustration is stemming from the fact I am still dealing with the bathroom remodel and trying to obtain the funding. There is so much red tape that I am wrapped up so tight into it that I need some scissors to cut my way out.

I had mentioned that we have some funds, but Jude also gets help from the program he is on. These funds will be necessary to complete the project. However, the contractors approved by this program are double the price of what the regular contractors. So therefore I submitted a bid from a certified ADA compliant contractor to a contractor on their list to have them match was a no go. They just flat out said no. I am so just doesn't seem right! So yesterday when I heard that very news I just lost it.......and Mike lost it because I lost it. It was not a pleasant scene at all.

So we were back to square one......what do we do.  I did find out we could submit our contractor to their plan, but it's literally a Bible thick book they have to fill out. It also can take awhile. So I continued calling contractors on the list and I found one that seems VERY nice and he said he has no doubt he can match the lower bid. However, this just made Mike angry because we have heard this before. So then we looked at trying to sell our house and build a new one with an upgraded bathroom for Jude. However, that seems a no go. My credit score is good, but prior collections are not. They would prevent this from happening. I said I would give full disclosure in this blog and I am. We walked away from several bills when Jude was diagnosed because Mike had to quit his job. However, we struggled and kept our house. We are now in a much better position than we were, but I still have clean up on the credit. We also looked at a railing system that goes over the bath tub, but then there is still the transfer for Jude. We could probably accomplish this through his hoist, but they are not easy to use. His also doesn't pivot. There is just no getting around the fact that the best thing for Jude as he grows is a roll in shower. Do people get around this all the time? yes. However, it's my goal to get one.

Topping things off Jude was NOT himself last night. His heart rate was about 130, he wasn't smiling, and he was toned out. I am hoping this is just allergies or Jude having an off day. We definitely don't want to go through a sickness right now. Charlotte said he was still toned out today so she gave him Motrin. The rest of his vitals look okay so we will just keep a watch on him.

Jude's doctor office called back regarding the nursing debacle. The doctor said in no way, shape, form, or fashion would she ever recommend Jude go without a nurse. They are going to review the information the health insurance company sent and take care of what they can on their end. So that's some positive information.

So I am just breathing in and breathing out. Reminding myself again how very blessed I am and marching on! We have a nice house, good jobs, great nurses, and wonderful therapists.

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