Thursday, November 17, 2011

When I get all steamed up, then I shout!

Roa has been a handful. To say the least.

He loves school. He loves his music group, his conductive Ed., his speech and OT times. He loves staying busy. Go go go!

Like a typical, spitfire, 3 year old, Roa wants things his way. Or no way at all. Like a typical, non-verbal child, when his desires are not recognized...he gets FRUSTRATED!
Arching, crying, red-faced yelling, tantrum time. This special behavior, of course, is reserved for mom and pop. Which is a good thing, I guess. But hard for us.

We are working on Roa's MyTalk application for his iPad with Functional Kids and the school so that he can have more outlets to communicate besides our few pictures, the Yes/no choices app, and the "pick a thumb" choice making method that we usually use. When Roa goes "to the dark side". It doesn't matter what choice you give him....he is flat out pissed!

Which, at this point in the Thayer house, is a pretty typical emotion. After 6 years with the company, Bryan was laid off last Friday. He was given a small severance package from API but was told that our insurance is done at the end of the month. Insurance is GOLD to a family with special needs. With therapy and doctoring every month, every day of the week,...with
special equipment etc, that cost a fortune,..we are scrambling.

Currently we are working with Handi Medical Supply to push throughout Roa's wheelchair order so that it is not out of pocket. Lisa from Handi has been a rockstar trying to make this happen. We are also working to get Roa on Medical Assistance and SSI to help pay for some of his doctoring and therapy costs. Roa has Botox and phenol injections at Gillette on Tuesday
next week!! We are praying that $15,000 bill will be covered!
We are job hunting. We met with our financial advisor, Saint Paul, as I lovingly refer to him as. We are scrimping and saving.

Life is full of ups and downs. We realize that. We pray. We work hard. We will be okay, as we are fighters! But once in a while the curve ball hits you a little bit too hard and you need to curse before you stagger on with your battle.

Just ask Roa....

Thursday, November 3, 2011

Update

We finally got the official order of a silver Quickie Zippie Zone Wheelchair in for Roa. By Christmas, we should have the custom built chair! Excited and sad all rolled together. Roa actually had the demo chair at home, school, and therapy for this week and did seem happy in it. Laura, PT from school said he loved tooling around the playground in it and going really fast with his friends! Roa had made a good friend named Caleb at school and they hold hands and play together. Tears of joy from this momma!
Jeremy, the builder of our swing set, helped make us a wheelchair ramp in our garage. Roa is so excited to have a ramp into the house for his gait trainer and chair.

School is going great! Roa is so motivated by the other kids and is more vocal in all environments. He is even attempting to imitate more speech. We have started using the My Talk app on the iPad to help him communicate his needs and thoughts. He did a wonderful job using his iPad while trick or treating, To say, thank you and trick or treat.

We continue with our busy therapy schedule but are actually taking a little mini vacation to Wausau, WI with good friends to get away from it all and to swim......of course!

Mom and Me

Mom and Me