but it's too cute not to put on the blog also. She got a bit camera shy but she was really going good before I got the camera out. Presenting Zoe's "I Love You" song.
Wednesday, May 26, 2010
Thursday, May 20, 2010
untitled because i can't think of anything to call it. just an update i guess
We had Jackson's IEP meeting on Tuesday. Everything went well. It was short and easy. Pretty much everything is staying the same, which is fine with me. Except that his vision teacher is moving to consultative only (rather than providing direct services) which I don't think makes a lot of difference since she is always saying that she doesn't see a lot of characteristics of CVI in him anyway.
Zoe is talking more each day. She is stringing 2 and 3 words together in sentences now. She feeds her dolls and stuffed animals the same things she eats and often can be found hugging and loving on them. She does this really cute "ooohhhh" noise as she hugs them. And she has started to put on my shoes and walk around with them on. She is turning out to be a very good little girl, if not a bit over-emotional at times.
Some pics and videos for your viewing pleasure:
Zoe is talking more each day. She is stringing 2 and 3 words together in sentences now. She feeds her dolls and stuffed animals the same things she eats and often can be found hugging and loving on them. She does this really cute "ooohhhh" noise as she hugs them. And she has started to put on my shoes and walk around with them on. She is turning out to be a very good little girl, if not a bit over-emotional at times.
Some pics and videos for your viewing pleasure:
My 3 sweeties snuggling up
Zoe swinging in the park last week. It was cold that day!
Taken by Jackson's teacher on a field trip. He is having a blast bouncing!
Talking!
Walking in Mom's shoes
Thursday, May 13, 2010
Monday, May 10, 2010
My funny girl
For the past 2 days she has been running around saying "mee chuu". At first we could not figure it out...until she started shaking hands. It turns out she is saying "nice to meet you!" She will shake her own hands, shake my hand, Lee's hand, Jackson's hand, the dog's hand, even shake her feet!
Hilarious and adorable is my girl! I sure do love her!
Hilarious and adorable is my girl! I sure do love her!
Alright, time for more boring medical stuff
So anyway, Jackson had an orthopedic appointment last week (Tuesday I think it was).
Hips look about the same, so good. Right hip looks worse than left. They both come out of where they should be when the legs are straight. They both look a lot better when his legs are frogged. Luckily that is a position that he kind of favors naturally so we are still just watching them with yearly x-rays and not treating yet.
Spinal curve has progressed somewhat to about 30 degrees. The doctor says this is a slow progression and we will continue to watch with x-rays every 6 months. He should continue to wear his TLSO as needed for support in sitting and standing, but does not need to wear it all the time.
His braces are getting small but still fit well enough that we can get a few more months out of them. We will go back in August and get casted for new ones.
His right leg is shorter than his left leg and his right arm is smaller than the left arm. His doctor was somewhat concerned about the atrophy. He said it can be an indication of kidney problems so he ordered an ultrasound of his abdomen. Personally, I don't feel there are kidney problems and we can chalk it up to his wonky central nervous system, just like every other problem he has.
So today we went to get the ultrasound done with a fun stop at the lab first to get some blood drawn to check his seizure med levels. It was an easy, painless (aside from the poke at the lab, but they got it on the first stick so a-ok), and fast test. He was back at school by 11 am.
They said the report should be sent by tomorrow to Shriners so if I don't hear I will call Thursday or Friday. But like I said, I don't think there will be any kidney surprises.
Hips look about the same, so good. Right hip looks worse than left. They both come out of where they should be when the legs are straight. They both look a lot better when his legs are frogged. Luckily that is a position that he kind of favors naturally so we are still just watching them with yearly x-rays and not treating yet.
Spinal curve has progressed somewhat to about 30 degrees. The doctor says this is a slow progression and we will continue to watch with x-rays every 6 months. He should continue to wear his TLSO as needed for support in sitting and standing, but does not need to wear it all the time.
His braces are getting small but still fit well enough that we can get a few more months out of them. We will go back in August and get casted for new ones.
His right leg is shorter than his left leg and his right arm is smaller than the left arm. His doctor was somewhat concerned about the atrophy. He said it can be an indication of kidney problems so he ordered an ultrasound of his abdomen. Personally, I don't feel there are kidney problems and we can chalk it up to his wonky central nervous system, just like every other problem he has.
So today we went to get the ultrasound done with a fun stop at the lab first to get some blood drawn to check his seizure med levels. It was an easy, painless (aside from the poke at the lab, but they got it on the first stick so a-ok), and fast test. He was back at school by 11 am.
They said the report should be sent by tomorrow to Shriners so if I don't hear I will call Thursday or Friday. But like I said, I don't think there will be any kidney surprises.
Sunday, May 9, 2010
Another one that made me laugh
I was in Jackson's room getting him dressed this morning. Zoe comes in and starts looking around at his walls which are decorated in a space theme. She points to a planet and says "ball". Then she points to an alien and says "martian" clear as day.
Isn't she a riot?! Where does she get this stuff?
Isn't she a riot?! Where does she get this stuff?
Friday, May 7, 2010
This girl kills me sometimes!
She is too smart! I was just getting her dressed and as we were putting on her pants, she started making her what-is-this-called sound. I was a little confused since I know she knows they are pants and it is a word she says often, but I told her they were pants anyway. Then she says "purple!" All I could do was laugh...yep, the pants are purple!!
She's only 19 months old!
She's only 19 months old!
Wednesday, May 5, 2010
A beautiful day
Jackson had only a half day of school today so we spent most of the afternoon out in the back yard. It was just about perfect weather...nice and sunny, about 70 degrees, and a cool breeze. Jackson doesn't get to spend a whole lot of time outside because he is so sensitive to the cold and heat, but today was a good day for him to be out as long as he was in the shade.
He wanted to enjoy some tunes while we were out there. Not sure if you can see from the terrible pics my phone takes but he is grinning like crazy!
Today Zoe decided she wanted to sit ON the flowers. I told her not to sit on the flowers, that it will hurt the flowers, that she could sit next to the flowers and gently touch the flowers...but then she had a bit of a tantrum. I had to give her a time out, which she really hates, and then she decided it really was ok to sit next to the flowers after all.
Here she is sitting on the flowers which are now flat.
Yes, we have a bathtub full of dirt and plants in our yard. It was there before we moved in! I kind of hate it and wish I could get rid of it, but it is too heavy for me to do myself. It does give Zoe something to dig in though. She loves playing in the dirt. :)
He wanted to enjoy some tunes while we were out there. Not sure if you can see from the terrible pics my phone takes but he is grinning like crazy!
Today Zoe decided she wanted to sit ON the flowers. I told her not to sit on the flowers, that it will hurt the flowers, that she could sit next to the flowers and gently touch the flowers...but then she had a bit of a tantrum. I had to give her a time out, which she really hates, and then she decided it really was ok to sit next to the flowers after all.
Here she is sitting on the flowers which are now flat.
Yes, we have a bathtub full of dirt and plants in our yard. It was there before we moved in! I kind of hate it and wish I could get rid of it, but it is too heavy for me to do myself. It does give Zoe something to dig in though. She loves playing in the dirt. :)
Monday, May 3, 2010
This made me smile!
Every day I get a note from J's teacher describing some things he did during school. Since he can't talk, he can't really tell me himself and I like to read the note in front of him and ask him questions about his day. Today she wrote:
"During circle I told everyone that the new month was May. Jackson got a big smile on his face. So I said 'What's so special about May?' And he smiled again. Then I said, 'Oh I know why you're happy it's May- because it's going to be your birthday!' and he giggled. It was really cute. He was very excited to tell everyone the date."
"During circle I told everyone that the new month was May. Jackson got a big smile on his face. So I said 'What's so special about May?' And he smiled again. Then I said, 'Oh I know why you're happy it's May- because it's going to be your birthday!' and he giggled. It was really cute. He was very excited to tell everyone the date."
Something new.
Today I noticed that Jackson's arms are quite a bit different in size. I was trying to warm him up after he got off the bus (they gave him an air conditioned bus per his IEP, but it was a bit much today). While I was rubbing his arms, I thought his arms did not feel the same. So I measured and his left arm is a full half inch larger in diameter than his right arm at the wrist and a quarter inch larger at the elbow!
I have also thought several times recently that his left leg looks quite a bit longer than the right while he was sitting in his wheelchair. But then sometimes it looks fine, so then I think to myself that he was probably just sitting crooked.
His left side is his preferred side so I guess it does make sense. Something to ask the ortho about...guess it's lucky we have an appointment tomorrow.
I have also thought several times recently that his left leg looks quite a bit longer than the right while he was sitting in his wheelchair. But then sometimes it looks fine, so then I think to myself that he was probably just sitting crooked.
His left side is his preferred side so I guess it does make sense. Something to ask the ortho about...guess it's lucky we have an appointment tomorrow.
Tricycle for Zoe
I finally dusted off (literally!) Jackson's old tricycle for Zoe. It's a Kettler tricycle with a pushbar. As it turns out she is a lot smaller than he was at that age so her feet hardly even touch the pedals. But she still loved it when I pushed her all around the neighborhood. She kept signing for more (that is one word she still always signs and never says).
No pics since it was just me and her and I had to push. Maybe if we have some nice weather this weekend I can get Lee to take some.
Jackson never liked riding on it (and he was really too little to pedal himself before he got sick). He wanted to get behind it like Mom and Dad and push it!
No pics since it was just me and her and I had to push. Maybe if we have some nice weather this weekend I can get Lee to take some.
Jackson never liked riding on it (and he was really too little to pedal himself before he got sick). He wanted to get behind it like Mom and Dad and push it!
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