Wednesday, January 5, 2011

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.


Anonymous said...

This is really awful and wrong. Does Tyler have a PT or OT that can participate in this process?

I see you have a fairly long blogroll and Ellen's icon on your blog. Can you ask any of the bloggers you read for their suggestions on this situation.

I have several posts on wheelchairs (includes info on strollers) linked in a box in the middle column of my blog.


It all started with a Kiss... said...

SERIOUSLY!!! You know if it was them or someone they knew they would be able to push it through A LOT faster!!! PATHETIC!!! You for sure need one soon! It's hard enough just being pregnant as it is! GOOD LUCK!!!:)

Beth schell said...

I know that my sister does baclofen for her CP and it helps a lot!