Sunday, July 24, 2011

Fishing For.........

This morning I decided it was high time to get our home in order. After having friends live we us for 2 months and then out of state company on and off for a month the house needed some attention.

I would love to say we all sang Kumbaya in harmony all morning while cleaning up but that would be a lie. However, in the end after much whining, fighting, and lallygagging, the house is clean..... for at least 12 hours that is.

As soon as we were done we loaded up into the van and went to a family picnic. The weather was perfect. The food was great and the company was awesome.

The boys however went straight to the lake which contained many little clawed creatures. Creatures that make this mommy's skin crawl. Creature which some eat but really in my opinion should not even be touched. Ode to the Crawdad....... YUCK! The hunt was on!

Armed with sticks, string, and hot dogs they went to work. By the end of the evening the blue bucket was full of grossness in all sizes. They were over the moon!

Makenzie and I sat with the rest of the family and ate dinner. We caught up with people we only see once a year. Makenzie showed off her talker and had a ton to say.

I am going to regress for a second on the talker.

Over the last month Makenzie has been trialing a eye gaze device that has the technology to scan her retinas through a camera and allows Makenzie to make a direct selection with her eyes. She rocked it and made more progress with the eye gaze in 4 weeks then she did in over two years on her current device.

We have looked at two different devices and will look at a third the beggining of August. I am pretty sure we know which device we are going to order but I want to see all of our options before we make a final decision seeing as the device costs about $30,000 and insurance will only purchase one device every 5-7 years.

On Monday we had to return the said device. We were busy with Granny and Paw Paw so I didn't give it much thought when we put it back into the box and watched it walk out the door.

However after the dust settled, I realized that Makenzie would have to go back to the painfully slow scanning and switch pushing which makes both her and I crazy.

Her therapist suggested that we mirror her current device to look just how we had set up the eye gaze. She hoped that this would let Makenzie continue to learn how to navigate the device and memorize where all of the pages are located so that when her eye gaze comes, Makenzie will have a head start.

So I spent several hours on Thursday afternoon mirroring the device. On Friday morning I put it in front of her. She looked at it. Then she looked at me with a very confused look on her face. I explained to her that this talker did not work with her eyes.She looked at me and fussed and then refused to even look at her talker. She even refused to activate her remote control toys.

Later that evening when I was putting Makenzie to bed and we were talking about our day I asked Makenzie if she was upset that her talker didn't work right. She looked at me and made the biggest pouty face and then began to cry. I cried with her. I then asked her if it would make her feel better if Mommy could make it work with her eyes again and she immediately stopped crying and started to smile and laugh. I cried again knowing that it would not be just a simple or remotely quick fix.

Last night I changed the settings a bit so that it scanned every box separately instead of scanning rows and then boxes. This morning I put it in front of her again and she did much better. I thought we had found a good compromise for the time being until I noticed this tonight at the park.......

See those little hands up at her chin? We have worked so dang hard to bring them down and relax. Putting the switch back behind her elbow means that Makenzie has to flex to get to it which in turn seems to be reinforcing a very very bad pattern. CRAP!!!

SO the bottom line is that Makenzie needs the eye gaze device. Please pray that the insurance company will understand this without a denial. Please pray that no appeal will be necessary. Just Pray

Well, I guess that was a whole post in and of itself.

Needless to say we had a great evening with family and friends. The boys had a great time catching crawdads and skateboarding.

( I always try to get pictures of Mr 13. He noticed me in this picture.....)

( and this is his reaction to my camera...... so I gave up! LOL)

We came home to a clean house which felt great.

I am sure my bed will feel pretty good too. In fact I think I might go find out.

Believe.... Prayer Works!!!


T said...

The eye gaze talker is fantastic! I have been using it for several years with the little boy I look after. He has severe cerebral palsy, and it has really made him grow! It also allowed him to maintain a place in mainstream schooling.

However, like Makenzie - there are times when we do not have access to the talker. Therefore, we created some sheets for him.

Each sheet had several options on them, in different coloured boxes - just like the talker. For example, his 'play' sheet had trains, paint, swing etc on.

We used it like the eye-gaze and he would look at the box that he wanted. For example, if he wanted to play trains, he would look at the train box on the sheet.

Like the talker, WE would track his eyes so he could still make his own decisions.

I hope this helps some? Not sure if it's v. clear - but it's an idea!

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