Preparing for clinic

A great topic was presented on March 18: "Clinic day must haves" and I wanted to follow up with an example of something we take to clinic every time. When Esther-Faith was first born, we went to clinic every three months. Then it became every four. And now, every six months.

But no matter what, we take a couple of summaries with us every time. Some of the things we include are specific to Esther-Faith's diagnosis, but we take them to keep us on track and to give a quick update to some doctors that she ONLY sees at clinic.

The information we take has changed over time. For example, to the clinic this month, we took a summary for urology and a general summary for her chart. Sometimes we have more info and questions for the physiatrist and the physical therapist. Or for the orthotics specialists. But we find that we ALWAYS refer to the summaries when we get overwhelmed or need to remember what questions we wanted to ask. Because we prepared them ahead of time.

Not that we've never been blind-sided. Cause we have been. By hip x-rays, and an extra CT, and some other stuff. We've met new doctors, and we've raised our voices. But in the end, we find the summaries to be very helpful. And it is great to go over the past updates to see how far Esther-Faith has come.

Some examples:

General:

• We included info about her KAFO's, walker, wheelchair, and use of all three.
• We included some social information (that she played soccer in the fall).
• We included information about what ground we thought she lost while hospitalized in January and February.
• We also included some information important to us and to her. That she likes dogs. That she makes up songs. That she was the flower girl in a wedding. We think it is important that the doctors see her as a child first and by her diagnoses second.

Urology:

• We include her cathing schedule.
• What she does to "help" with the cathing.
• Any problems we've had (UTIs, bladder washes, etc...)
• We include a section called "challenges" where we details some of the issues we've had. Esther-Faith is learning to cath herself, and this is where we talk about that progress (or this time, setbacks because of the ruptured appendix).
• We include two sections called "fluid intake/food" and "output" where we detail what she typically eats and when and what she voids. We don't take detailed records anymore, but we do pay attention to how much we get when she gets cathed. This helps the urologist determine what, if any, tests are necessary. This is where we also detail any questions or issues we're having with her bowel management program.

We find that these reports really keep us on track with the doctors during clinic. Ultimately, we are the expert on our child and we want to be seen as such with the doctors.

I'm more than happy to send one of our actual reports if you are interested. Just email me at ohiohennhouse@gmail.com.

~Karin.

(from the HennHouse)