Thursday, February 26, 2009

Switch adapted toys

So Jackson has really been getting into this relatively new show on Noggin called Yo Gabba Gabba. It is a really unusual show. I like it...but it is really crazy! There is a character on the show named Brobee. One of my online friends said her Target had dancing Brobee dolls on clearance after Christmas for $9. I went to 2 different Targets here, but they did not have any. My friend actually went out and got me one and sent it to me from Arizona! How cool is that!

Because Jackson is too physically limited, he is not able to play with 99% of regular toys...and about 99.9% of age-appropriate regular toys. So I am getting good at adapting toys so that he can operate them by himself using a special switch. I used this tutorial to learn. It really isn't hard, the hardest part was learning how to solder well. And it doesn't take long either.

Here he is when I first adapted the toy for him:

Now Jackson loves his Brobee. Even when he is not making Brobee sing and dance, he likes to hold his hand. Is that sweet or what!?





Saturday, February 14, 2009

My two handsome dudes

Jackson and Daddy went to get haircuts today. They clean up real nice, eh?

Before...shaggy, but still handsome.



After...looking good!! Much better!

Friday, February 13, 2009

Jackson's appointments this week

We had appointments on Monday and on Wednesday of this week. Both days were in Milwaukee so it was a good deal of driving. Luckily we had the nice new van to make the trips. Also, Lee was able to stay home with Zoe both days so that made things a lot easier for all of us. She did well, and even managed to take a good amount of milk by bottle on Wednesday.

Monday we had a neurologist appointment. We think he is still having seizures. They are going to arrange more long term monitoring again, only this time it will be done at home rather than inpatient. They can even get everything done locally rather than having us make the trip there and back and there and back. He will just go about his day normally...well as normally as possible with a bunch of wires stuck to his head.

His neurologist seemed kind of put out when he learned that Jackson was having several tests related to his dysautonomia. We had asked him previously if there was anything that could be done about it and he had brushed us off. Grrrr.

So Wednesday was his testing day. We were scheduled for an EMG and an NCV, which measure how the muscles and the nerves in his body are working as well as a head CT to compare to the ones he has had in the past. The doctor doing the testing decided that he did not need the EMG, which was ok with me since that can be a painful one. It appeared that the big groups of nerves in his body were working normally except for the ones that make him sweat. They tested his arm and his leg and they could not get any sweating which is definitely abnormal.

The doctor also said that most of the nerves responsible for dysautonomia are smaller ones that could not be measured with that test so just because most of the results were normal it doesn't mean everything is actually working normally.

One funny thing was that the foot he was testing was very cold (as it often is) so he stuck a little thermometer on it. It was not registering at all so they thought the thermometer was not working, but it turned out that his foot was just too cold to register. This is a foot that had been inside a shoe and a sock inside a warm car and a warm waiting room. Poor kiddo!

The CT went well. He was able to stay still without sedation and it only took a couple minutes.

Hopefully we should have the results pretty soon. I am interested to hear what this all means as far as treatment.

As we were getting ready to drive home, I asked Jackson if he wanted to watch Blues Clues. He was just looking at me like "Mom, we're in the van, we can't watch TV. Don't try to trick me." So I put on the Blues Clues DVD for him and he thought it was pretty cool...he was laughing and screeching as we were pulling out of the parking garage.

Thursday, February 12, 2009

Gratuitous pics and a video

I hope you are in the mood for some cute baby pics!

Here is what her crazy toes look like now. They are so long they fold themselves over!
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Some nearly naked shots...I just love her chubb!
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Her tough expression
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Smiley baby
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Admiring her own cuteness
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Hanging with big brother
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I think these two are going to be best buds
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And last but not least, a very cranky baby rolling over

Photo Sharing - Video Sharing - Photo Printing

Monday, February 9, 2009

She's rolling!!

I had put Zoe down on her playmat on her tummy the other day. She rolled right over by herself within 2 seconds like she had been doing it her whole life! Then later that day I had put her down on her back on her playmat and went to the other room for a second. I heard some fussy noises and went to check her...she had rolled over onto her tummy!

So she rolled both ways for the first time on the same day! Pretty crazy!

Wednesday, February 4, 2009

Fantastic news!!!!

We got the house!!! Remember the one we were just too late on so we put in a backup offer? It was a short sale so the bank decided who got it. It took them forever but today we heard that it is ours!!

It is a bungalow, quite a bit like the one we live in now...only it's in way nicer shape and in the right school district.


So we are going to modify for accessibility and do some fixing up of that house, then move, then fix this one up, then sell. And Jackson should be able to start at his new school for summer session!