Wednesday, October 31, 2007
Tuesday, October 30, 2007
Evan loves all kinds of stars!
These are star puffs. If you aren't familiar with the star puff, they are made of corn and essentially dissolve the instant they touch saliva. Evan ate about 4 or 5 this morning for daddy (who was so excited, he called me at work with the news). And he ate another 4 or 5 for me--on camera of course. I love watching him chew, and the tiny "crunch-crunch-crunch" sound he makes when bites the stars. If you listen real carefully, you can hear it in the video.
Don't show your tummy...
I know there is some fancy developmental term for what I am about to describe...I just can't remember it.
You know how Evan pulls his shirts down to cover his tummy? Well, the other night I was laying on the floor and my shirt had crept up a little bit. He crawled over to me and pulled my shirt down too! It was so funny. I thought it was pretty smart that he could generalize a situation that happens to him, and apply it to me.
I tried to get him to do it again tonight, but he was too into "fast crawling" around the kitchen rug. When he gets to crawling like Speedy Gonzales, you can pretty much forget about getting his attention.
You know how Evan pulls his shirts down to cover his tummy? Well, the other night I was laying on the floor and my shirt had crept up a little bit. He crawled over to me and pulled my shirt down too! It was so funny. I thought it was pretty smart that he could generalize a situation that happens to him, and apply it to me.
I tried to get him to do it again tonight, but he was too into "fast crawling" around the kitchen rug. When he gets to crawling like Speedy Gonzales, you can pretty much forget about getting his attention.
Sunday, October 28, 2007
One Jar
I fed Evan an entire 2.5 oz jar of sweet potatoes today. I can't promise he actually swallowed the whole jar, because a lot came out of his nose and he smeared quite a bit on his face and clothes. But over the course of two meals, I spooned every last bite into his--for the most part--open mouth.
By the fuss I am making about this, you would think Evan ate something tantamount to the size of a mayonnaise jar. But when your child can't or doesn't eat orally though, that's how big one of those tiny infant jars feels.
If you haven't lived this, there is no way you can understand the frustration involved. I mean, how do you teach your child to swallow? Something so basic--either they do it, or they don't. And if they don't...they really don't. They gag, choke, sputter--or if your are particularly unlucky, maybe even vomit--over the tiniest spoonful, the "non-nutritive taste" given least they forget God's intended purpose for a mouth.
Even more maddening is being caught in the catch-22 that is being labeled "NPO," for fear of aspiration. You are told that you can't feed your child anything by mouth (that's what NPO means, it's Latin) because it may go down the "wrong way" and he or she could get pneumonia. But how are they supposed to learn how to swallow without actually eating something??? The short answer is they can't--at some point you have to just take that risk, figuring it's more harmful to let them develop an oral aversion and take your chances with aspiration pneumonia.
And so, after almost a year of VitalStim therapy, over a year and a half of "tastings," here we are. One Jar. Not just a few spoonfuls, with the remainder languishing in the back of the fridge until there is no doubt in the answer to the age old question of "Could that still be good?" Or the rest being portioned out into tiny freezer containers for later tastings. Or, shy those spoonfuls, dumped into the day's blended diet to be tube fed throughout the day.
No, he actually ate it. One whole Jar.
The first sweet potato meal.
Sweet potatoes, part 2.
By the fuss I am making about this, you would think Evan ate something tantamount to the size of a mayonnaise jar. But when your child can't or doesn't eat orally though, that's how big one of those tiny infant jars feels.
If you haven't lived this, there is no way you can understand the frustration involved. I mean, how do you teach your child to swallow? Something so basic--either they do it, or they don't. And if they don't...they really don't. They gag, choke, sputter--or if your are particularly unlucky, maybe even vomit--over the tiniest spoonful, the "non-nutritive taste" given least they forget God's intended purpose for a mouth.
Even more maddening is being caught in the catch-22 that is being labeled "NPO," for fear of aspiration. You are told that you can't feed your child anything by mouth (that's what NPO means, it's Latin) because it may go down the "wrong way" and he or she could get pneumonia. But how are they supposed to learn how to swallow without actually eating something??? The short answer is they can't--at some point you have to just take that risk, figuring it's more harmful to let them develop an oral aversion and take your chances with aspiration pneumonia.
And so, after almost a year of VitalStim therapy, over a year and a half of "tastings," here we are. One Jar. Not just a few spoonfuls, with the remainder languishing in the back of the fridge until there is no doubt in the answer to the age old question of "Could that still be good?" Or the rest being portioned out into tiny freezer containers for later tastings. Or, shy those spoonfuls, dumped into the day's blended diet to be tube fed throughout the day.
No, he actually ate it. One whole Jar.
The first sweet potato meal.
Sweet potatoes, part 2.
Saturday, October 27, 2007
Cider House Rules
Rule #1: Dress warm in case it gets cold
Rule #2: Help mommy pick lots of apples
Rule #3: Give mommy a big hug after all that hard work
This afternoon Evan and I, along with Julie and Baby Kaia, went to a friend's house to pick some apples and watch fresh cider being pressed. The cider tasted fantastic, the company was great (thanks to the Kocher family for inviting us!), and the beautiful weather made for some fantastic photos. If you would like to see all the pictures, they are posted on Shutterfly http://share.shutterfly.com/action/welcome?sid=0QZMWjJmyaMXIQ
Rule #2: Help mommy pick lots of apples
Rule #3: Give mommy a big hug after all that hard work
This afternoon Evan and I, along with Julie and Baby Kaia, went to a friend's house to pick some apples and watch fresh cider being pressed. The cider tasted fantastic, the company was great (thanks to the Kocher family for inviting us!), and the beautiful weather made for some fantastic photos. If you would like to see all the pictures, they are posted on Shutterfly http://share.shutterfly.com/action/welcome?sid=0QZMWjJmyaMXIQ
Peek-A-Boo
The past couple of days, Evan has insisted that the TV had to be off--any time it was on, he would crawl over, push the "power" button, and then grumble to the TV screen. At least, that was how we had been interpreting his actions.
Yesterday, I paid a little closer attention to what he was doing. Quite suddenly, a familiar pattern emerged...Evan was playing peek-a-boo with his reflection in the TV screen!
Yesterday, I paid a little closer attention to what he was doing. Quite suddenly, a familiar pattern emerged...Evan was playing peek-a-boo with his reflection in the TV screen!
Tuesday, October 23, 2007
Modest Evan
Evidently, Evan has become more self-conscious of his belly. He immediately moves to cover himself up any time you lift his shirt.
Friday, October 19, 2007
I Love Stars
Evan ate some "Chicken and Stars" baby food this afternoon. He did really well--eating (or smearing around) almost 2 oz! This was a toddler food, and was a little chunkier than I realized. Evan gagged on a "star" in one of the initial bites, but once I mashed it up a little bit more he was willing to try again and did great.
Here are some pictures of the fine mess he made. Knowing he's making some progress with his oral feedings makes it almost fun cleaning him up again...almost!
Here are some pictures of the fine mess he made. Knowing he's making some progress with his oral feedings makes it almost fun cleaning him up again...almost!
Sunday, October 14, 2007
Sunny, Beautiful Fall Day
Today was absolutely gorgeous. It was sunny, no wind, not a cloud in the sky. The kind of day that begs you to do yard work...the kind of day that a thin t-shirt warms you enough if you are working...the kind of day that you might mistake for the end of summer, except the low angle of the sun somehow feels different. It's like summer's last kiss good-bye.
We took a few pictures of Evan with his Autumn Burst maple in the back yard. This tree was a first birthday gift from Grandma & Grandpa Key and Auntie Jen. I thought it would be cute to get a picture of him standing, holding on the the trunk all by himself. Evan had other ideas. I love the last picture of him, surrounded by bright red leaves, intently studying them.
We took a few pictures of Evan with his Autumn Burst maple in the back yard. This tree was a first birthday gift from Grandma & Grandpa Key and Auntie Jen. I thought it would be cute to get a picture of him standing, holding on the the trunk all by himself. Evan had other ideas. I love the last picture of him, surrounded by bright red leaves, intently studying them.
Monday, October 8, 2007
What's Wrong, Little Pookie?
I found this book today and bought it based on the title alone.
Jeremy read it and said that it reminded him, with a few modifications to the text, about a day with our Pookie, when he is upset and has to keep trying different things to make Evan feel better.
The book begins with "Oh, sweet little Pookie! Your bright eyes are all wet. Come over and tell me why you are upset. My Pookie won't answer. I'll just have to guess." Then there is a whole list of questions the mommy asks Pookie to find out why he's crying. By the end, Pookie has forgotten what made him upset in the first place.
We figure our version would go something like this:
Pookie, are you hungry?
Does your g-tube need vented?
Do you need a hug?
Do you need an albuterol puff?
Is your hearing aid buzzing bothering you?
Are you getting an ear infection?
Is your diaper wet?
Do you want to take your eye patch off?
Are you mad because I made you wear your glasses?
Jeremy read it and said that it reminded him, with a few modifications to the text, about a day with our Pookie, when he is upset and has to keep trying different things to make Evan feel better.
The book begins with "Oh, sweet little Pookie! Your bright eyes are all wet. Come over and tell me why you are upset. My Pookie won't answer. I'll just have to guess." Then there is a whole list of questions the mommy asks Pookie to find out why he's crying. By the end, Pookie has forgotten what made him upset in the first place.
We figure our version would go something like this:
Pookie, are you hungry?
Does your g-tube need vented?
Do you need a hug?
Do you need an albuterol puff?
Is your hearing aid buzzing bothering you?
Are you getting an ear infection?
Is your diaper wet?
Do you want to take your eye patch off?
Are you mad because I made you wear your glasses?
Favorite Pictures from Bellingham
Evan and I spent this past weekend with Max and Amy in Bellingham (Jeremy missed this trip--he stayed home to work and enjoy two nights of uninterupted sleep). We went to the Down Syndrome Outreach Buddy Walk, went out to dinner, shopping, and just hanging out. Sunday was the Fall CHARGE group get-together (unfortunately, I got so caught up in visiting that I didn't get any pictures of all the kiddos together again...). These are the best pics from the weekend.
I always wondered if Evan was the only kid that liked watching TV this way...guess not
Max shared his neat indoor play structure with Evan (by the end of the weekend, Evan figured out how to climb up the slide by himself, turn around, and slide back down)
At the Buddy Walk, by Whatcom "creek" (a rushing river by my standards)--love the fall leaves and the look on Evan's face
After the walk, Max looked up in the sky and noticed some birds. Amy was signing "bird" to him, and after they flew away he made his "where'd they go" sign (he also makes a sound that sounds just like "where'dtheygo" sometimes too). Real, meaningful communication--it is so inspiring to see.
Evan and Max playing very well next to each other while we were waiting for dinner.
I always wondered if Evan was the only kid that liked watching TV this way...guess not
Max shared his neat indoor play structure with Evan (by the end of the weekend, Evan figured out how to climb up the slide by himself, turn around, and slide back down)
At the Buddy Walk, by Whatcom "creek" (a rushing river by my standards)--love the fall leaves and the look on Evan's face
After the walk, Max looked up in the sky and noticed some birds. Amy was signing "bird" to him, and after they flew away he made his "where'd they go" sign (he also makes a sound that sounds just like "where'dtheygo" sometimes too). Real, meaningful communication--it is so inspiring to see.
Evan and Max playing very well next to each other while we were waiting for dinner.
Thursday, October 4, 2007
Evan, the Director!
Whenever I bring out the camera now, Evan stops whatever cute thing he was doing and reaches for the camera. Tonight, I set the camera on record and let him have at it. Although I don't think he'll be up for any cinematography awards anytime soon, the results are somewhat entertaining. I especially love the giggles at the end.
Evan Almighty
Eva's mom, Crystal, has set up an online store with stuff like sweatshirts, mugs, calendars to raise money for the CHARGE Syndrome Foundation. One of the kiddos she has featured is Evan--we love his sweatshirt, and will have to order one for him soon.
If you are interested in seeing any of the other products Crystal has, the site is
www.cafepress.com/CHARGEingStrong
Great job Crystal!
If you are interested in seeing any of the other products Crystal has, the site is
www.cafepress.com/CHARGEingStrong
Great job Crystal!
Tuesday, October 2, 2007
Reuben
I've mentioned our CHARGE friend Reuben more than a few times...I've added a link to Reuben's web page (it's in the list of other friends, to the right).
Reuben just got a trach placed last week, and during his recovery his mom took this picture of him with his froggy (trached too, of course)
It reminded me so much of this picture of Evan with his Pooh bear--both with CPAPs (shortly before this picture was taken, a trach was discussed as a possible option if the CPAP failed)
Reuben just got a trach placed last week, and during his recovery his mom took this picture of him with his froggy (trached too, of course)
It reminded me so much of this picture of Evan with his Pooh bear--both with CPAPs (shortly before this picture was taken, a trach was discussed as a possible option if the CPAP failed)
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