Archive for September, 2013

Breathing and walking

Saturday, September 28th, 2013

Maria missed a week of school and then started to feel better. She went back but we were a little concerned because her breathing was pretty gurgly. She managed Monday and Tuesday and then on Wednesday the nurse strongly suggested Cathy take her to the doctor. X-rays and no pneumonia, but she took the rest of the week off, canceled therapies and such, and generally took it easy. Her breathing is still lousy. We are of course giving her breathing treatments and the vest but they don’t seem to be helping that much. Her mood is OK but a little cranky.

Next Saturday (Oct. 5) we are going to do the Zoowalk for Autism Research (any donations appreciated). Our team is walking in memory of Maria’s friend, Dalton who died last year of a seizure probably related to his autism. It’s been cooler here, finally getting down below the triple digits. The walk starts at (ugh) 7 am so it should be nice and cool. We get free admission to the zoo for the day, so that’s fun.

Strep Throat

Monday, September 16th, 2013

Maria’s been acting a little out of sorts the past few days. Didn’t eat well for Andy Friday night, and was a little warm, then woke up Saturday with a fever. It hovered around 102 for much of the day, but might have even gotten up to 104…not sure how accurate the thermometer is, but I called “Dr Esperanza” anyway (nanny Sue). She’s my “go to girl” when I don’t know what to do with Maria.

Maria still had a fever Sunday, so we took her to the doctor (another good reason to live in Phoenix, the pediatrician’s office is open on the weekends), and they swabbed her throat and said she has strep. I’m sure she’s had it before, but I don’t recall when (Andy probably does). One of my friends recently had strep and she said it was the worst she’s ever felt. Maria is feeling pretty crappy herself. She slept all day today, which is good. Days like these (when Maria doesn’t want to eat or drink), I’m glad she has her g-tube, because I just feed her my magical mixture of Greek yogurt, Pediasure, and local honey. It works especially well since she’s on antibiotics for 10 days.

New DMO and AFOs

Sunday, September 8th, 2013

Last we went to Orthotic Specialists and picked up Maria’s latest pair of AFOs (ankle-foot orthotics). The foot part is a little bigger than her last pair (barely a year old), but the leg part (ankle to knee)–holy moly they’re much taller! She is growing so much, it’s just remarkable! The designs on all the previous pairs have been cute and child-like, but these…we picked zebra stripes with pink straps. Of course. And she has socks to match. Duh.

The DMO is Dynamic Movement Orthotic. It’s a 1-piece suit she wears all the time. It’s made of stretchy material, like a girdle, kinda, but prettier colors (hers is pink and lavender. What else?). It’s short-sleeved and goes to about mid-thigh. It has a short zipper in front, long one in back, a hole for the diaper area with zippers on each inner thigh, making for super easy diaper changing. Of course, there’s a hole for her Gtube, so it’s easy to access that with her suit on. The purpose is to help with her positioning, give support to her worsening scoliosis, relax her spastic muscles, and help her organize her brain. (Sometimes special kids’ brains are chaotic and random, deep pressure all over helps calm the brain and focus and have more spatial awareness. It’s a little challenging getting it on, but we all like it. And it’s good in the pool, too! Tomorrow we’ll go to soccer in it for the 1st time.

School is still going well. We like her general ed teacher still. She’s very good at including Maria in the community of her classroom. It looks like I’m going to have to start getting a little tougher with some things because Maria is no longer doing any weight-bearing in school, and while therapists and doctors seem to have differing opinions on just about everything, weight-bearing is one thing they all seem to agree on — the more the better. Gotta get my ducks in a row first…

Oh yea, and apparently, I have migraines. I got some nose spray medication, so next time one hits, we’ll see if it works!

Tomorrow Maria is getting her first massage! I really need one too, I have a persistent knot in my left neck, shoulder, scapula.