Wednesday, November 30, 2011

Cerebral Palsy Clinic

After our last appointment and failed baclofen attempt we had another appointment to me with the spastic team or CP Clinic. We needed and wanted more information before we went forward and we needed and wanted more information with both of us there and to see if there was any positive changes from last Phenol shots. Plus, we were out of refills for our baclofen and we get a bit desperate for those.

For the first time in six years I got the time of the clinic wrong. Yep, I screwed it up. It was suppose to be at ten. They had called on Friday and told me 10:30. We did get there at like 10:45 but since we had missed our entire appointment they were going to reschedule. I said OK, and almost started crying. She got us a new baclofen script and said we could wait until 12:30. So we waited.

After enjoying a exotic dinner at Rainbow cafe we went back, got in and talked with Dr. O for over an hour. Got most of our questions answered and had Tyler not stopping, just like normal. He did wonderful and let Wendy touch him and stretch him and talked to them like he had always known them. I must say, having no tears was a nice change from our normal meltdowns as we stretch and pull, and tug and pull. He actually seemed to like it.

I however, lost it. I usually don't cry till the night of these types of appointments. But there I sat with Dallas asking his questions listening to the risks that the baclofen trial/ pump presents and thinking " Why won't this go away? Why do I have to weigh one risk of death with another? How do I chose between a shunt failure and the possibility of hundreds of surgeries just to keep his body moving?"

Dr. O gave me a tissue and I couldn't wait to leave. We got our information, a shot/surgery date for January and a quick escape route.

Unless you are sitting in that very room, hearing those words constantly, there is no way for a person to "get it." You can try. But you will not know the horror, anger, hatred and stress that is put on a persons mental state.

The only plus, Tyler is amazing. He will always be amazing and he will always do whatever he wants. Regardless of the situation he will be amazing.

1 comment:

Stacy said...

You know, our situations are very different. But I do understand the gourmet lunches at the Rainbow Cafe, breaking down int he middle of appointments, and meltdowns in private, often. Hang in there.