Thursday, January 24, 2013

Spasticity Clinic

Ready for our day!
Once a year (or at least every 18 months) for the last 15+ years, I have had to take Brielle to the Spasticity Clinic (in whatever city we lived in). Spacticity means "increased muscle tone, or stiffness, which leads to uncontrolled, awkward movements". In other words, spasticity is one way to refer to cerebral palsy. At the clinic, doctors and medical professionals from several disciplines meet together to see children all at one appointment.
Hold still for the x-rays!

It feel more like a mauling than a doctor's visit. She sees the:
- nurse
- the physical therapist
- the x-ray technician (to take x-rays of her hips and back)
- the physiatrist (also referred to as rehabilitation physicians and are medical doctors who have completed training in the medical specialty of physical medicine and rehabilitation)
- the orthotist (also referred to as a prosthetist and is a healthcare professional who is specifically educated and trained to manage comprehensive orthotic and/or prosthetic patient care - for fitting Brielle with leg braces)
- the orthopedic surgeon
- the nutritionist (if I ask, we used to need more advice about getting more calories into her diet)
- a social worker (if I ask, last year I consulted one to help with the issues we'll need to face when she turns 18 years old)
Pick a card, any specialist you want.
(Oh, and there's usually at least one resident who tags along to learn)
Our private room for the day!

All of those specialist in the span a few hours is overwhelming. I have to be prepared with questions and concerns I want them to address as well as things to do while we're waiting in between specialists (and believe me, there's PLENTY of waiting time in between).
Brielle and Mom hanging out
in between specialists
(We got lots of school work done!)

Yesterday's appointment went relatively smoothly despite leaving the house at 9am and not getting home until 4pm. At least we got in early. Unfortunately, the rest of the day was rushed. We had only 20 minutes for lunch in between specialists to catch our breath!
Pizza for lunch in the cafeteria.
Yummy! (sort of)
The best news of the day was that Brielle is doing so well that we don't have to go back again unless we have any new concerns. Yay!

Her new meds.
Stylish, eh?
The other good news of the day was information we got from the physiatrist. She gave us several other options to help control Brielle's drooling issues. Despite the Botox injections she received in late October, her drooling is just as bad as ever. We've been so disappointed we haven't been able to do something for her to help the issue. But finally at this appointment, we got a script for a "new" medicine. Actually, we tried this medicine before (several years ago), but only in a MUCH smaller dose. It's a patch that is designed for seasickness but has a side effect of drying out the mouth. She's been wearing one and so far so good! 

Thanks to my friends and family for giving me the love, prayers and support to get through the day. I kinda get a little "wacky" from the stress of the day. But, today was THE LAST time we need to do this!  Woohoo!!

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