Monday, March 21, 2011

Clinic day

It's been a couple of weeks... but a lot happened at clinic.

UROLOGY. We gave the urology nurse our summary. She said we're doing everything right (if she only knew!), and she quizzed Esther-Faith about cathing. Because our use of bladder washes has kept Esther-Faith off antibiotics for UTIs, she prescribed some more. Esther-Faith will be assessed for Ditropan. She'll have a renal ultrasound, VCUG, and urodynamics test in mid-April. Boom. Boom. Boom. One right after the other. It should be a fun day. And I TOTALLY see a trip to Build-a-Bear in our future.

ORTHOTICS. Esther-Faith is GROWING. Her KAFOs had to be "grown" by an inch. This will be the last growth for this set of KAFOs--then we'll need new ones. And I feel like we just got these ones. While we were there, Nick (SUPER orthotics guy--he totally needs a cape or something) took a look at some of the things that were concerning us. He adjusted, and tweaked, and bent, and twisted until he got it right. The appointment was long, but I tell you what, I like Nick MORE AND MORE every time we need something done for her orthotics.

WHEELED AMBULATION. Esther-Faith's wheelchair ALSO had to be "grown" at clinic. The footrest was moved down and the seat moved back. All while we were there at clinic!

BOWEL MANAGEMENT. We talked again about the cecostomy. Again, after last year, I seriously hesitate to VOLUNTEER my child for another surgery. And really, if we decided to do it, we might have our first all-out rebellion on our hands. We'll see.

NEURO-PSYCHOLOGY. The exam will be scheduled. Although, nearly every practitioner who met our daughter--from developmental pediatricians to clinic nurses to the social worker to other doctors--all agreed that the exam was really a formality. It is PRETTY CLEAR that our daughter struggles with attention, hyperactivity, impulse control, and staying in her own space. All things we adore about her. All things that could make kindergarten a little difficult next year.

OCCUPATIONAL THERAPY. Esther-Faith will start to work with an occupational therapist to help her get stronger in her "trunk" (Cassie: apparently Ab RipperX doesn't count!) so that she can continue to develop her cathing skills. She nearly has the routine down, but there are two things that she still struggles with. Getting her pants down and getting the catheter in. The catheter part will come with time, patience, and practice. The balance to get her pants down is where the OT will help. We hope. Cause I really can't even wrap my brain around TWO possible surgeries.

PHYSIATRY. I took my laptop with the video of Esther-Faith taking tiny, tiny steps by herself to show the physiatrist. I wanted her to know that not only did she learn to walk with crutches, but also she learned to walk WITHOUT them. We've been using borrowed crutches. The physiatrist prescribed Esther-Faith her own. It was a small victory, but a victory none-the-less.

SOCIAL WORK. We met our third social worker in five years. I liked her, but really, I'm going to try not to get attached. She asked us lots of questions about Esther-Faith, our family, etc... We talked about our family dynamics, the boys, etc... Coincidentally, Isaac had just been kicked off the bus that week, and Isaiah was getting into his own brand of trouble at his school, so the social worker had another social worker friend give us a call. These sorts of things always make us chuckle. By the time the call came, Isaac had earned his way back onto the bus and Isaiah was in all sorts of different kinds of trouble. The issues of that morning were nearly forgotten.

ORTHOPEDICS. Prior to clinic, Esther-Faith had some hip x-rays done. They show a little bit of something (the word escapes me now), but nothing serious--just something to monitor and follow. And she has tibial torsion. I don't know for sure what that means, but her left foot turns in when she walks and apparently the turn is in her tibia. In "typically developing" children, the condition almost always corrects itself. In Esther-Faith, (as with most things with her) we'll watch and wait. The doctor said it *could* mean surgery, but not for many years.

I'm sure I'm forgetting something.

Esther-Faith danced with Nick in the hallway.

She hid from Tim when he wanted her to come back to the room.

While we were talking to doctors, she introduced herself to the other patients IN THEIR ROOMS (see Neuro-Psychology note about personal space).

She charmed all the medical professionals--even when she was being sassy.

She answered her own questions.

She took off with one of the wheelchair guys' tools.

She asked me if she was being brave enough for a surprise.

She took the light from the developmental pediatrician and examined HER ears.

She acted like the sassy, little princess that she is.
Even when she wasn't getting her own way.
Which if I'm honest, is pretty much ALL of clinic.


Colleen said...

Wow, what an eventful clinic! I'm so impressed with her. Nate is the same age and won't answer any questions. She really seems to be more mature and "own" this more than he does. This gives me motivation to work on that. ;)

Anonymous said...

See the power of positive thinking within you. God bless you