Saturday, March 30, 2013

Rylie the Brave

What Miss Rylie has been up to...

 Wearing her shiny shoes and Mommy's hat: 

Rylie's 2nd Birthday Party

Watching shows with Grandma:

 Making Grandpa hold all her dogs and baby dolls:

Having some SCD, GFCF birthday cake: 

Big Girl Haircut:

I'm busy Mom, get away with that camera.

Covered in blueberries and trying to jump on the trampoline:

Refusing to wear pants but insisting on boots:

Coloring her feet with a marker:

Early morning bling:

Running away and refusing to get her diaper changed:

Getting into Mom's stuff:

Wearing as many clips in her hair as possible:

Refusing to take off her boots for nap time: 

Teaching her baby doll to use the potty (even though she hasn't figured out how to use it yet herself):

She refused to get on any bounce houses at Monkey Joe's, so we sat and cuddled for a while, then had our own photo shoot together with my phone while Hayden played.

She got herself ready for school (with Hayden's hat and backpack, no coat, no pants or shoes.) Apparently both my children have a problem with wearing pants.

Stealing Mommy's sunglasses:

She enjoyed the Children's Museum this past weekend. Here she is playing Archeologist. (While Hayden is busy digging, she's walking up and down admiring her cool outfit and then trying to push her stroller around.)

The other day on the way to school she sang nearly the entire ABC song on her own. I was so astonished I had to pull the car over and record her.

Rylie has always had a knack for memorization, like her brother. Usually you only have to teach her something once, like the name of an object or how to do something, and she will remember it from then on.

First Steps came to evaluate Rylie for services. They did not approve services for her gait, which I disagree with. I hope that as time goes on it either improves as they say it will, or that they come to see that it is truly an odd gait. (It kind of reminds me of Gollum's sideways walk.)  They did agree that she has low tone (poor muscle strength.) They did approve her for OT services to help with her feeding disorder (not chewing, chipmunking her food in her mouth, refusal to eat some textures and temperatures), and sensory issues (she doesn't like her teeth brushed, hair brushed, sitting in her car seat, clothes put on over her head.)

Here is a link to the Adaptive portion of her eval

An OT will come once a week to her daycare. Excited for the services to start! The OT will come to our place this week for the initial visit and services should start after that. It was also nice to have the therapists confirm my suspicion that Rylie is actually above average in all areas other than adaptive (OT). For example, her use of language is unbelievable. Each day she surprises me by saying something new, and speaking in more and more complex phrases, usually 4 but sometimes up to 6 words each:
"I want diff-ent one."
"I no like it."
"My tummy hurt, too."
"Help Mommy, open this."
"Hayden took! Mommy! Hayden took Rylie 'puter! No, Hayden, that not nice! That mine!"  (This last one made both Hayden and I crack up! She was on the couch, nowhere near the computer, and went running over to him yelling this when she saw he had gotten on it.)

Rylie was started the vitamin supplement Carnitine after her last Autism appointment, along with several other things, and it has really helped her overall health, immune system, and hair growth. Her hair especially is thicker and shinier and starting to actually grow. I'm excited to see what the next appointment brings. Probably more blood tests, but also more information.

Her stomach still has major issues of some type. Her diarrhea is improved but she still has borderline diarrhea most of the time, and if she's sick or eats something she shouldn't, her BMs are nearly water. Her belly is usually hard to the touch and distended.

Here I was about to change her diaper and realized that it was a good view of her distended belly, so I took a picture first:  

Hopefully we will be able to do an Organic Acid urine test at her next appointment (with a catheter since she refuses to pee in a cup) to see what kind of issues there are in her gut. I'm guessing bacteria and yeast, and hoping it's not parasites (all common problems for children with Autism. Rylie does not have Autism that I know of, but does have Mitochondrial Metabolism Disorder which can be an underlying cause of Autism. Hayden has Mito as well.)  An article about Mito: 

I've joined several new Facebook groups and I'm trying to learn a little more each day. Some of the groups I've joined are:
Autism, A Natural Approach (Treating Autism with Essential Oils)
Mitochondrial Autism
Pediatric Feeding Disorders

Rylie is not a completely healthy child yet, but she's much improved from a year ago, and despite all of her illness she's always happy. Each day she improves and shows that she really is a strong and brave little girl.

Love you Ry-Bug!

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