Hurray!!

What an INSANE week. After the Spastic clinic and Baby Isaac coming I really wanted a calm and collected week. Nothing ever goes as planned. At the end of the week, after 8 months of waiting and many phone calls, reorders and mean words to insurance companies and IHC people we became the owners of a NEW Swifty stroller.

After talking to the wheel chair shop every day this week the Secretary finally talked Shane ( the wheel chair dude) into letting us get it before all the accessories are in. I was SO thankful. I really, really needed it. Ty and I had a full day planned on Saturday where it would be impossible to do without a stroller. I couldn't have been happier to get it.

When Ty got in to try it out he said "Wow. I fit." Promptly got out and went to play. We used it on our outing and it was wonderful.

Today while it was raining, we used it to get into Shriner's.

I couldn't be more thankful.

* The cost of the stroller is HUGE. Though we find it wonderful and amazing it came with a price tag of about 4 grand. Insurance does NOT cover it all. *

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?

Is it really that hard?

In October we went to visit our Rehab doc. We ended up seeing her and the nurse practitioner. We generally see them through Shriners Cerebral Palsy clinic but they had been backed up and Dr. Gooch was not over there for a while. We hadn't had a follow up ( yep I know, bad mommy!) since our Phenol injections over the summer and knew we would be needing them again in the winter. Because we didn't get casts in the summer we really wanted them for the winter.

While we were there we talked with them about a baclofen trial, ( which we can't even talk about because we don't have extra coverage. So even though it would be WONDERFUL for the type of CP that Ty has they won't do it.) and we talked about looking into a stroller. An adaptive stroller that holds a little bit more than the 30 pounds the infant travel systems ( that we are STILL using) holds.

As soon as we were done we were sent downstairs to the medicaid office that PCMC has in the building. We filled out 7-10 pages of information, was sent to Dr. Walkers office to sign stuff saying that Tyler is INDEED disabled and that he did INDEED deserve to have medicaid D. ( Medicaid d is for disabled people and not traditional medicaid) The social worker there said it would be awhile before his application was processed but I should be getting papers in the mail.

Not long after we got home a rep from the wheelchair shop and they were working to get a stroller started for Tyler. They wanted to get it submitted before Jan.1st when our deductible starts over. We gave them our ideas of what we wanted and he said he was going to start working on it.

This was OCTOBER!

Fast forward to January. I called starting at 10 am on Tuesday. I left 4 messages on our case workers phone. 2 calls to the wheelchair shop and 2 calls to our case manager at the pediatricians office.

The wheelchair shop said that once they saw that some people really hated the stroller that we liked so he stopped going through the process. They didn't call us. I told him that I had emailed his PT and given her our other options. Apparently it wasn't passed on. I gave him the new information and that we really liked them. He had never heard of the brand we were looking at so he sent an email. We have to wait. Some more.

The average wait for a wheelchair is 9 months. Seriously! Nine months. I cannot be carrying Tyler for NINE more months.