Sleepy day today....


The next project we finished...a table for Gus' feeder seat (we do tons of stuff in the feeder seat so it's really nice to have the table for him). Matt and George just finished it last night and Gus already loves it.

Here's a picture of Rose reading Gus to sleep today...we wondered why he was so quiet.

beautiful day

Yesterday out again on his trike. (His hands are wrapped with Coban tape to keep them on the handle bars.)

...keep happening

Gus is doing better all the time. We thought he might plateau on his progress any time now but he just keeps surprising us. His desire to keep moving, suddenly rolling over or throwing himself out of our arms (only to laugh really hard at us) keeps us moving.

He is making new sounds but not really any words. We'd really appreciate prayer that he could speak clearly. It is so frustrating to him as he makes the same sounds over and over and we just don't understand him. He looks worried and confused often.




We finally finished the book:



We 'read' it every night to him, talking about the events of the day. Each of the items in the book are the same items we use when we go to do each thing. (For example, the rug stands for 'belly time' and the keys represent going somewhere in the car.) This will hopefully lead to an understanding that books are a representation of a story that happened, like with his book.



Molly is desperately trying to walk, but loves to show off how she can stand without support. We tell Gus that he feels the encouragement from her because lately, he wants to stand more on his own too. He suddenly holds himself up, with little or no help from us to maintain the stance (we do help him get to that position to begin with).

Thank you for praying...miracles keep happening. God is so good.

Communication Board

We had a visit yesterday from Jo, Gus' vision specialist. Her genius for communicating with kids with vision difficulties is amazing. I showed her the board we made last week and she modified it. The side with all of the 'visual cues' are some of the options we give Gus and would like him to choose from. She put two tabs of Velcro on the other side so that the choice is simplified. We take two options, place them on the other side and Gus chooses one. We are having him look at the one he wants and then touch it. Some days he refuses to look...other days, he refuses to touch...and then other days are fantastic and he does exactly what he needs to do. So, here's the modified version of the board. We'll be changing it as he gets faster and better at letting us know what he wants.





My homework from Jo is to make a book that we read to him each night with object cues representing the activities of the day. I'll let you know when that's done.

Trike Time!

Here's the finished tricycle...











He loves it. We've been around the block and he enjoyed every minute.














Even Molly likes it.












The communication board this past week has been a little bit more effective...he's actually grabbing the spoon when he's hungry!













This is the latest art project done with his home therapist (OT).
Hopefully we'll finish another project this weekend....

Over the last year and a half, we've been thrown into a world we knew nothing about. I found whatever I could online about anoxic brain injury and read tons of blogs. Some were helpful in just helping us to feel that we weren't alone. Others were helpful in telling what therapies worked well and which ones were not worth the effort. I've appreciated all of the help that others offered and in light of that, I'd like to let you know of the different projects we've come up with that have been helpful to Gus.

The Swing
This past spring, we made a swing, similar to the ones posted by others who have children with autism. I altered the design to use heavy duty upholstery material (super soft on one side) and made it with plenty of material so that he could grow with it. On one side I put snaps to support him so that he can sit sometimes while swinging. We put a dragon pillow in it for him to ride on when he is on his belly which helps support his head when he is a little too tired.

Eating
We've worked hard this past summer on having Gus eat by mouth with the goal of getting rid of his g-button. There were definitely some ups and downs but we've come far. One of the things that has made the biggest difference for Gus to want to eat is eating with us, especially the same food we eat. Now, if we are eating and holding him (after he has finished eating), he complains very loudly until we give him some of our food, until it is all gone (or at least until we say it is). Because he has done so well, the dietician said yesterday that we can cut back on more formula...hoping to be formula free very soon.

The Communication Board
To help with understanding him, our latest project is the communication board. A lot of the communication devices given to kids like him are electronic and expensive. Gus isn't at the point that he could get one of those (through insurance) but we needed to work on understanding him better so we made this board. Each of the objects represents something - the cloth diaper (to have his diaper changed), the red cup (to have a drink), the purple spoon (to eat some yummy food), the blue ball (to bounce on the exercise ball), and the pink wind-up butterfly (to play games with someone). As he gets faster, we'll add more options. The goal will be to have him look at the object and then touch the object that expresses what he wants to do. Eventually, we'd like him to be able to take them off and bring them to us (they are stuck on with a Velcro strip).

The Tricycle
Our next objective is to help him with walking. To help his brain establish the pattern needed for walking and running, a cycle is very helpful. The tricycles available for kids like Gus are pricey so we've bought a Radio Flyer trike with a long handle in the back (for the adult to steer with) and we're working on making a seat to support him. He loves being pushed around outside with his legs moving like that. We hope after a while he'll be walking better at therapy. I'll let you know when we finish with that one.

The Backpack
Last spring we started using a backpack for Gus. He rides on our backs when we go for walks. The rhythm of the walking and the outdoor input/stimulation has helped to calm him and give him the exercise he needs (he sits up straighter and his neck is stronger from it).

E-Stim
One of the therapies that have been really successful for Gus is E-Stim on his face. Twice a week, Gus has stickers put on his face that emit a small amount of electrical current, enough to stimulate the muscles to contract. Since this has started he has made new noises and is better at closing his lips.

HBOT
Many of the nearly-drowned children stories that I've read mention using HBOT, Hyperbaric Oxygen Treatment chambers. They sound like they might help...but the cost is too much for us, thus we've not tried it yet.

Nutrition
For supplements, we've tried Spirulina and have seen remarkable difference within a few days for awareness with a quicker ability to respond. Also, we have not had any problems with his g-button irritating him as long as we keep up the spirulina and his daily dose of cod liver oil.

If I think of anything else, I'll let you know.