We aren't doing it

When we had our last rehab appointment we needed to go to the spastic clinic. We had never actually been to it since we did 90 percent of our stuff at Shriner's hospital, but we got the appointment and I took Tyler ( and Grayson because I was still pregnant, haha) and started a plan to get Ty a little less spastic ( or tight) in his legs and other parts.

Originally the plan presented was to cast him and brace him. We did that and it didn't do anything. In fact it made no difference and just made him upset. The people doing the testing weren't surprised because they don't think it is in his hamstrings but in his ankles. Since they didn't think it was his hamstrings a cord release surgery was not an option.

We moved on to Phenol injections which we have been giving. We got them moved up and sooner so that we could look at a baclofen pump and a trial. So we decided to go forward with the trial and we had to wait till after we had Grayson so that we had the time and the ability to do it.

We got the information on the baclofen trial and Dallas and I felt HORRIBLE about it. We don't know what the deal was but Dallas answered the questions for the check in. We still didn't feel ok about it.

So I called. I called to get some more information and to see if they were able to calm any of my concerns. They weren't. In fact, I was even more upset over it. I was also so mad at myself because one of the reasons to not do it is medical cost.

When I had Tyler I really thought that no matter what the cost we would give him the BEST care and that it wouldn't matter what it cost. But it does matter. If something goes wrong we lose our disability for Tyler. Losing our disability takes away his Medicaid. Losing medicaid means we pay out of pocket for the pump refills. The refills we get right now are on the 4 buck list at walmart so getting a refill is "no big deal." But a pump refill. THOUSANDS of dollars every few weeks. Not to mention that we have to pay for the hospital and the sedation that will be used.

When I mentioned cost, they said without medicaid they usually don't even try it because families shouldn't be bankrupt with medical costs. It would cause more burden that it is worth.

I felt horrible and better at the same time. It looks as though we will try a few things first and we will evaluate the situation in November. Maybe in a few months it will look more appealing than right now.

Medicaid D

When we went to PCMC back in October for a follow up for Tyler's CP and last phenol injections, the Nurse Practitioner sent us down to the medicaid D office on the bottom floor. As we were going through possible future treatments she mentioned that it was unethical for her to ask us to have to pay 20 percent of the cost. His long term care would be to costly and it would make a family homeless. Without the treatment it wouldn't "kill" him so it isn't technically withholding treatment. It would just make his life a little easier. She said that we really needed to get secondary coverage so we could afford all the things that he is going to need.

Of course you leave a little frustrated knowing that you will never be able to take care of your child and frustrated that the system works the way it does. If he was more severe or had a trach there is a waiver. If we were poor there would be no issue. But the fact that we are middle of the road, middle class people we get to chose between a place to live and things that will make his life better.

After the appointment we went right down to the Medicaid D office. It was almost closing time but we decided to sit there and fill out the stack of paper work to start off the application instead of having to turn it in to another office and forget to do something. So I sat there with Tyler and filled it out. After we were done it was taken right down to the neurosurgeons office to have his nurse fill out papers. By the time we got back home his nurse had called. She filled out what she could and decided that she wanted Dr. Gooch to fill it out. So she nicely took up it there and that was all we had heard.

Thanksgiving came and the high and rush of the new baby and then Christmas. Soon after the new year as we were working on the stroller thing and I kept calling the social worker. He would never return my calls so I was annoying and called every day at 2 and left a message. For ONE full week. Then I called our nurse coordinator at our peds office. I NEVER have used a coordinator. I have always done it myself. Clint, the nurse coordinator, laughed and said our doc said the same thing. She will never call you. She does it herself. BUT I broke down and got some help. He called a few times and finally I got some random person who said someone would call me back in 3 weeks. I was like um NO.

After a few 3 hour phone calls our dude called us back from PCMC. He said that they had been sending it to a random Nancy Brown somewhere in Lehi. We got them looking at our application and the address they have is our current address but they were sending it someplace else. Once we got that fixed we got some extra paper work in the mail.

Last night as we were going through insurance coverage and deciding how much we could afford on the extra stuff for flex spending and what not we filled out the PILES of paper work. They don't cater the forms to kids so you spend an hour filling out stuff that is Not applicable. Then they ask you to compare your kid to other normal kids and tell them what is not "normal" for your kid. I was like "Um really." Your asking for all our health records to send it to a board of people to determine if he has a need for disability and you want me to remind myself that we suck.

Sweet... Lets do that.

So 2 pages later as to what we suck at and I am about done mentally. Emotionally I was done from the day before. Tears start flowing. Then MORE tears because I realize as we get older and older, that me as the mom are making the adjustments of stuff we didn't want to be doing at 5 and other people are telling us he isn't welcome because of those things.

Today, I have lots of appreciation for the kid that I do have and a realization that his life and his well being are a balance and that if others who should love him can't made the adaptation then I will do them for him and do them alone. If we can't get the disability then we go homeless or sell a car. We make his life easy for him. We didn't want to be changing diapers at 5 and we didn't want to be ordering strollers or wheelchairs and braces and being told we can't do something that will make his life easier.

So 30 more days and we MIGHT find out that our spend down a month is outrageous because again.. those darn middle class folks just are rolling in the secret Dough and we start over in our quest.

If you have applied for Medicaid D what advice do you have? Was your spend down NUTS? Are we barking up the wrong tree?

Nancy- Care: My insurance OPTION!

With all the insurance and health care reform debate I thought I would give MY option and open it up for debate.


This is what I *PURPOSE*

I would like the government ( or anyone for that matter) to let me PURCHASE my own plan that is AFFORDABLE with no preexisting clause. * For the record, for the past 4 years Tyler, Dallas and I have been insured one way or another so TECHNICALLY nothing should be considered preexisting while applying for current plans.)

By affordable I mean around 5 or 6 hundred bucks a month. Have the fee be on a sliding scale so that everyone is paying into the program that opts to BUY health insurance can. I am not asking that "my" health insurance be paid for by anyone else other than me but give me an option.


This is my issue:

You are all saying don't let the government take over. But my next option is to make the LEAST amount of money possible to get medicaid which you are ALREADY pay for. Wouldn't you rather that there is an option that we are paying instead of YOU paying.