Walking Wings & My First Protest - Art (PHOTOS)

I'm just learning how to upload photos...the art scan is too big, I'll try to figure it out later.

Walking Wings & My First Protest - Art

Thanks to everyone for their positive support in writing this blog! It feels good to have a place to share. I hope it feels intimate enough. We care so much about each one of you. So, anyway, here is the scoop this week!!

Buoyed by online reviews and more importantly, by Jones' PT, I went to Babies R Us (way over on the East Side so many rounds of Wheels on the Bus were sung) to buy this new device called Walking Wings. As you can see from the photos it's a supportive harness that helps children walk without having to be held by their hands - it's definitely not a leash, it's for emerging walkers. Although it's not specifically intended for children with special needs,t in Jones' case (and other CP kids from reviews) it works for him too. It went so well on the first day!! He instantly felt freed to explore in a different way than by having me support him. It allows him to totally direct his path. Unfortunately, he mostly wanted to stomp and kick Owen's neatly arranged Matchbox race that was in progress. Poor O had an look of indignation but then realized the comedy and victory in it. It's so funny, Jones has this cheeky little side to him that comes out when he can physically do something. It reminds me that he is just a normal 17 month old trickster just trying to act out! As a sidenote, I don't think I will be seeing my chiro as much anymore. Thank you Dr. Krantz, you rock!

I'm sure you have all heard about the protest going on down at the Capitol. Ginny (Mike Langer's wife - well, she's mine friend now!!) and I took Owen, Jones and Leo down there last week. I wanted Owen to see why school was cancelled, it ended up being four days off. It's hard to explain unions and collective bargaining to a six year old but, I think he gets some of it. Now that it's evolved into the Dems leaving the state, I'm kinda over talking to him about it. He often chants "Take a walk Walker!" and "Kill the Bill!" He brought me this fantastic drawing of "me in all the protest signs". I just love his art, as all parents do. I'm so moved by his creative mind expressing itself through drawings. I'm so impressed by him in so many ways but through his art I'm able to view the world as he sees it, and it's beautiful.

Some of you have asked what the Ames Street Cafe is - it is our kitchen. Brett started saying it that when he would call to find out what Tom was cooking for dinner, to see if he wanted to come over or not. Thus the Ames Street Cafe was born - we also call it the Ames Street Grill when Tom is firing it up.

Tonight's Special : Tom is in Las Vegas so it's a heat up the oven kinda night or TGFTJ, Thank Goodness for Trader Joe's Fish Sticks and Potato Wedges. We serve them with whole, raw carrot sticks and organic D'Anjou pears slices. For dessert we had Chocolate Peanut Butter and Red Velvet cupcakes from Barnes & Noble Cafe thanks to Aunt Libby.

Braced Up & Level 16

If any of you are out of the loop, a quick catch up - Jones had a difficult birth, it was precipitous, with meconium present, and the cord was wrapped around his neck so that he was not breathing. He was resuscitated and sent to the NICU. Once there he began having seizures, that were then controlled and stopped, he has been seizure-free since. We also found out that he had a lack of oxygen sometime before birth, either from the cord being compromised or placental detachment. When he was eleven months old he was diagnosed with moderate Cerebral Palsy - thus begins our journey! He is 17 months old now and doing well with lots of therapies and lots of hope that many milestones will be achieved :)

We had an appointment with Jones' Rehabilitation Doctor this week. She had many new suggestions to help improve his tone and mobility. He was fitted for a trunk brace, which like his thumb splits, will be neoprene with Velcro closures. This brace will help him sit up straighter so he can hopefully use his arms/hands more. Underneath the brace, he will wear two strips of kiniesiotape placed on either side of his spine, all the way up his back. The tape is like a muscle prompt, crazy! In several weeks he will receive lower leg braces, I'm not sure how they will look yet. These braces will help align his leg and feet muscles in the proper position for walking.

The most challenging aspect of the Dr.'s advice is to begin Botox injections which will decrease the high tone in Jones' muscles. We are pretty sure that we will do it, we just need a little time to mull it over. There are two major benefits, one is that it will help reduce the risk that confractures of the muscle and bone will form, causing irrevisible deformaties. The other is obviously, with decreased tone, he can move more. So more on that later...

Owen's teacher just retested him at reading level 16. Although I don't know what that specifically means, it's good! His whole reading group is now at a 15/16. He is still in a cluster group, which are students from different classrooms of the same reading level. It was started because Owen didn't have any similar readers in his class. For all of the last semester he was the highest level reader in the Kindergarten but now his cluster group has caught up, which is great. He is playing basketball and is fast! He has no idea what to do with the ball but, they are all learning. Offense and defensive are difficult concepts for 6 year olds to master.

Ames Street Cafe Special - Spinach burritos with grass-fed beef, topped with Organic Valley sour cream and a side of guacomole.

Reviews: "I don't like the green stuff. What is it this time, cilantro?"