We picked up our new and totally awesome van yesterday. I made Lee drive it home so I could play with all the toys and buttons. I have never seen a car with so much stuff! It's like riding in a spaceship!
Right now I am watching the DVD that comes with it and I am just amazed by all the crazy stuff it can do. Jackson seems to like it and I bet he will like it even better when he realizes he can watch a DVD on our long drives to Milwaukee.
It is a Honda Odyssey with a VMI northstar conversion. I will posts some picture later.
Friday, January 30, 2009
Saturday, January 24, 2009
Dancing Queen
One of my friends suggested I put Zoe in a jumper to work off some of her energy in the hope she would nap better. We had a jumper for Jackson but apparently it does not have all the bells and whistles, and it was kind of difficult to get the baby in and out. So we found a major bargain on craigslist only 6 blocks from our house...woohoo! We got it for only $20! Lee picked it up yesterday and Zoe seems to really like it.
She doesn't really jump in it so much as dance with her arms flailing around. She does the exact same dance while getting her diaper changed...kind of like an enthusiastic tap dance.
Photo Sharing - Video Sharing - Photo Printing
She doesn't really jump in it so much as dance with her arms flailing around. She does the exact same dance while getting her diaper changed...kind of like an enthusiastic tap dance.
Photo Sharing - Video Sharing - Photo Printing
Jackson's new AFOs
He picked out the strap design and color all by himself. I was surprised he went for the camouflage! They are the same 2 part design we had last time. That works well for him.
Unfortunately, we are sending them back to be modified. They were ordered without exterior heel stabilizer foam, which pretty much make them unusable without shoes. Well, we use them all the time in his stander without shoes so it needs to be added. His last pair had it so I am not really sure why this pair did not since they were both ordered by the same person.
Anyway, here they are...
And here is the "see how much I've grown" shot with all of his AFOs (except for his very first pair, I think I threw them out). He has 2 red pairs because those were not made right so they made another set.
And this will be the last shot of all those AFOs all lined up...I am donating them to Orthoses For Others along with his old TLSOs. I have to admit feeling a little sad to give them away, but they are not doing us any good, they are just taking up space. Better to give them to someone who can make good use of them.
Unfortunately, we are sending them back to be modified. They were ordered without exterior heel stabilizer foam, which pretty much make them unusable without shoes. Well, we use them all the time in his stander without shoes so it needs to be added. His last pair had it so I am not really sure why this pair did not since they were both ordered by the same person.
Anyway, here they are...
And here is the "see how much I've grown" shot with all of his AFOs (except for his very first pair, I think I threw them out). He has 2 red pairs because those were not made right so they made another set.
And this will be the last shot of all those AFOs all lined up...I am donating them to Orthoses For Others along with his old TLSOs. I have to admit feeling a little sad to give them away, but they are not doing us any good, they are just taking up space. Better to give them to someone who can make good use of them.
Monday, January 19, 2009
A moment of peace...
Jackson has the day off of school for Martin Luther King Jr. day. I went to eat some lunch and when I came back this is what I found...
Kid #1
Kid #2
It was short-lived though...they are both awake now.
Kid #1
Kid #2
It was short-lived though...they are both awake now.
Thursday, January 15, 2009
Pump problems!
Jackson's enteral (tube feeding) pump broke today. It was fine yesterday but today would not run without alarming and showing an error on the screen. Luckily he is not on continuous feeds anymore so we are able to give him his food and water by syringe when necessary. I called the home health company and they sent a new one out. I got his dinner time feeding all ready to go, put it into the feeding pump bag, and put the bag into the new pump. As soon as I closed the pump door it started alarming and showing a different error. Shutting it off and turning it back on did not help.
I called again and the lady I was talking to kept saying it had to be something I was doing since it was a brand new pump. Trust me, I have used this pump for years now and I know how it works, it was NOT me...plus all I did was close the door and it started alarming. She said she would check with the nurse and call me back. I guess she called the pump manufacturer and they told her I needed a new pump because they are coming back again tonight with another new pump. Hopefully the new new one will actually work.
I called again and the lady I was talking to kept saying it had to be something I was doing since it was a brand new pump. Trust me, I have used this pump for years now and I know how it works, it was NOT me...plus all I did was close the door and it started alarming. She said she would check with the nurse and call me back. I guess she called the pump manufacturer and they told her I needed a new pump because they are coming back again tonight with another new pump. Hopefully the new new one will actually work.
Friday, January 9, 2009
My shy girl
She gets very shy when people look at her and she will often smile and then either hide her eyes or turn away. Here she is hiding from herself in the mirror!
Photo Sharing - Video Sharing - Photo Printing
Photo Sharing - Video Sharing - Photo Printing
Tuesday, January 6, 2009
Househunting
We saw 7 properties yesterday...and none of them were good for our needs. There were two worth mentioning though.
The first one was a really nice stone American four-square. Unfortunately, it was in a terrible state of disrepair. Much too bad to consider seriously. But in its heyday it was a beautiful house. It makes me sad that it was in such bad condition. I keep thinking about it, but it's really too much work...who knows how much it would cost to fix it up and it would take forever.
The second one was a Spanish Colonial. In the photos we saw beforehand the rooms looked HUGE and it seemed like it was in super nice condition. So even though there were no bedrooms on the first floor, it was possible that we could divide up a couple of those giant spaces and make a bedroom for Jackson. When we got into the place, we couldn't believe our eyes! The huge rooms were actually very small... that must have been one heck of a photographer! Plus it was way too expensive and the agent was smarmy. Bleck.
Anyway, 7 houses is too much to look at with a baby all at once so we won't be doing that again. I will send my agent (Lee) to scout out the houses beforehand and then I will only get to see the good stuff.
The first one was a really nice stone American four-square. Unfortunately, it was in a terrible state of disrepair. Much too bad to consider seriously. But in its heyday it was a beautiful house. It makes me sad that it was in such bad condition. I keep thinking about it, but it's really too much work...who knows how much it would cost to fix it up and it would take forever.
The second one was a Spanish Colonial. In the photos we saw beforehand the rooms looked HUGE and it seemed like it was in super nice condition. So even though there were no bedrooms on the first floor, it was possible that we could divide up a couple of those giant spaces and make a bedroom for Jackson. When we got into the place, we couldn't believe our eyes! The huge rooms were actually very small... that must have been one heck of a photographer! Plus it was way too expensive and the agent was smarmy. Bleck.
Anyway, 7 houses is too much to look at with a baby all at once so we won't be doing that again. I will send my agent (Lee) to scout out the houses beforehand and then I will only get to see the good stuff.
Saturday, January 3, 2009
Our Christmas
We have been really busy around here, which is why there has been no update recently. Everyone is fine though.
We had a nice Christmas, just the 4 of us on Christmas day. Then the next day my mom and her husband came to visit for a little bit. Here are some cute pics:
Jackson with his new Chicago Bears hat:
Checking out the cool dinosaur tattoos in his stocking:
Zoe with one of her presents. This pic does a good job of showing how blond she is:
And our little cheerleader on game day. Unfortunately the Bears blew it bigtime!
In other news, we are going out looking at several properties this coming week. I don't have great hopes for any of them for various reasons but I guess you never know until you see a place in person.
I don't think I ever updated about what the new palliative doctor decided to do as far as testing. It was a big fiasco trying to get him to get back to us but he finally did after nearly a month. Anyway, Jackson is going to have several tests in early February that hopefully will give us some clues on how to treat his dysautonomia. He will be having an EMG and an NCV which measure how the muscles and the nerves in his body are working and he will also have a head CT to compare to the ones he has had in the past. I looked on the orders for the tests and the doctor had written "progressive dysautonomia" as the diagnosis. I had not thought of his dysautonomia as progressive until recently but I suppose it makes sense thinking back on things. They hope to figure out if the dysautonomia is secondary to his brain injury (which I am thinking it most likely is) or if it is a primary dysautonomia.
We had a nice Christmas, just the 4 of us on Christmas day. Then the next day my mom and her husband came to visit for a little bit. Here are some cute pics:
Jackson with his new Chicago Bears hat:
Checking out the cool dinosaur tattoos in his stocking:
Zoe with one of her presents. This pic does a good job of showing how blond she is:
And our little cheerleader on game day. Unfortunately the Bears blew it bigtime!
In other news, we are going out looking at several properties this coming week. I don't have great hopes for any of them for various reasons but I guess you never know until you see a place in person.
I don't think I ever updated about what the new palliative doctor decided to do as far as testing. It was a big fiasco trying to get him to get back to us but he finally did after nearly a month. Anyway, Jackson is going to have several tests in early February that hopefully will give us some clues on how to treat his dysautonomia. He will be having an EMG and an NCV which measure how the muscles and the nerves in his body are working and he will also have a head CT to compare to the ones he has had in the past. I looked on the orders for the tests and the doctor had written "progressive dysautonomia" as the diagnosis. I had not thought of his dysautonomia as progressive until recently but I suppose it makes sense thinking back on things. They hope to figure out if the dysautonomia is secondary to his brain injury (which I am thinking it most likely is) or if it is a primary dysautonomia.
Subscribe to:
Posts (Atom)