Saturday, February 23, 2008

The dog and cat...together

One of Evan's most treasured toys are a couple of pieces from one of his wooden puzzles. He loves to play with the dog and the cat pieces, and he will take them all over the house (and around town on errands). They are great for banging together like cymbals, or on the TV screen, walls, name it.

Evan is kind of OCD about it, too. Jeremy has also realized that the dog has to be in Evan's right hand and the cat in his left hand. If you try to give one t his "wrong" hand, he'll reach across with the other hand, or push it away completely.

In case this is just a passing phase, I wanted to get some pictures of Evan, the dog, and the cat...playing all together.

Walker (Kittitas Ranger?)

Evan's OT, Gail, brought Evan a different style of walker to try. It reminds me a little bit of a hand truck. This walker works in a way that is more intuitive for Evan--when he feels like using it!

The last time we tried his other walker, he kept wanting to turn so he was facing the back and push it that way. Since that walker has a lock on the wheels to keep it from going backwards, it didn't work so well.

With this one, he lifts the handles just a bit, pushes forward, and he's off! I was not able to get very good pictures of Evan in action. As for most activities these days, he'll do it if it's HIS idea--otherwise, no way! When he was using the walker, he zipped away so fast I could hardly snap a photo.

Sunday, February 17, 2008

Nice Afternoon

Today was beautiful--sunny and no wind. We took Evan up to the college campus to get some walking practice. The student union building at CWU has a nice big indoor "hallway" (it's the closest thing to a mall in Ellensburg). I got some great shots of Evan in his walker...but that's about as good as it got. He would take a couple steps, then drop to his knees and crawl out of it. I try to just keep in mind what Evan's PT has said about walkers: kids that are close to walking on their own don't usually want to use one, because it's more in the way than helpful. So maybe Evan is just on the cusp of taking some unassisted steps...

After the "walk," it was so nice we stopped by a park. This particular park has the bucket swings for little kids, that Evan loved last year. Evidently, that love did not carry forward to this year, because he burst into tears the moment Jeremy put him in the swing. We'll have to try again another day.

I love you Sit'n'Spin

Reuben's mom, Catherine, has inspired me with her photography skills. She takes the most gorgeous close ups of her son. Valentine's day has passed, but I thought I would try to capture Evan's love for--what else--his Sit'n'Spin.

Saturday, February 16, 2008

Swallow Study

Evan finally had his second swallow study yesterday (it had to be rescheduled a couple times due to uncooperative weather). I am pleased to say that he "passed" and is cleared for purees, 5-6 spoonfuls at a time. We were expecting some small improvement, but this is big! To go from "spoonfuls" (he skipped "pea-size" amounts entirely!).

Evan still is not cleared for thin liquids, but this is a huge jump for him. His last swallow study was about 1 year ago, just after he began VitalStim therapy. At that time, he was very obviously aspirating small amounts between swallows. We were told not to give him anything to eat orally (the biggest Catch-22 of all--how are you supposed to learn how to do something better if you aren't allowed to practice?).

So what does this mean in practice? Well, we are in the midst of a 6-month trial of prophylactic antibiotics and no oral feeding, to see if this makes a difference in the frequency of "ear" infections. So we aren't going to jump right back in pushing the oral feeds. Right now, I feel Evan eating orally is something I am doing more for me than for him. He is happy being tube fed--he doesn't know any different. And if it keeps him from being sick so often...that's a great thing. When Evan gets older, and bigger, his anatomy may be different enough that he won't be so prone to getting sick.

Thursday, February 14, 2008

Evan's Sign Vocabulary

Jeremy and Evan's Teacher of the Deaf, Kat, sat down today and made a list of the ASL signs Evan "knows." If you include signs he copies and understands, as opposed to just the ones he makes on his own, it's a decent size list.

Signs Evan has produced on his own (at least once)
Come here
Flip (as in "Do you want daddy to flip you over his shoulder?")

Signs Evan has copied

Signs Evan understands, but hasn't made
Wait here

Velentine's Day

This is the inside of Jeremy's Valentine. I thought it would be cute to put Evan's hand prints in--sort of like his "signature." Evan was not such a fan of the idea.

This is a great example of how tactile defensiveness can have a huge impact on a simple activity...something as seemingly innocuous as making a hand or foot print with paint. Something I imagine a typical kid this age would have fun doing.

I had red poster paint in a bottle, with a sponge applicator tip. As I dabbed paint on one of his hands, Evan yelled like crazy. He obviously hated the feel of paint on his hand. So I very quickly pushed his hand onto the card, but he yelled even more because he doesn't like having his hands touched or held. Not a great print, but it was pretty much a one-time shot. Then I had to wash the paint off with a washcloth...he hated this, too. I didn't even try his other hand. It wasn't worth it.

Sunday, February 10, 2008

We have a climber...

It's official: Evan is now a climber!

Couches, chairs, beds, tables...hardley a challenge for our intrepid little guy. Ironically, he is scared to take steps independently for fear of falling. But he will clamber up just about anything these days without a second thought.

Friday, February 8, 2008

Maraca Magic

Yesterday was a great day for Evan. The past couple of days he has been more "secretiony" than usualy, and for the past few nights he has been coughing in his sleep and just sounding really junky. He's even allowed us to put on his CPAP, so I know he's having a hard time breathing.

Last night, he was in rare form. Jeremy and I were playing with him at his block table, and I started shaking his maracas and being silly. His face lit up with a giant half-grin, and he just started giggling. He would sign "want, want, want" and then I would give him a maraca and he'd push it back to me (he really wanted me to shake it more for him). After a couple of rounds of this, he took one maraca and started shaking it himself. Another huge grin--I know he was thinking "Hey, I can work this myself!" Then I started tickeling him down his back with the other maraca and he would giggle some more.

Strong emotions do not let language (or lack thereof) get in the way of being expressed. Evan may not know the signs for "happy" or "funny," but he was radiating a joy that superceeded the need for words. I didn't take any pictures. Neither did Jeremy. We didn't want to break the magic of the moment by leaving to get the camera, not knowing how long it would last. Somehow I think the pictures would have been a little disappointing--the moment would have seemed flat, not as vibrantly real as it was last night.

Monday, February 4, 2008

Super Bowl Snack

Neal, Michelle, and McKenzie (our friends across the street) invited us over to watch the Super Bowl yesterday. McKenzie, who is now 3, is quite the little miracle baby herself...she was born at 26 weeks, weighing a mere 18 oz. Needless to say, she and Evan have had lots of medical equipment in common...including pulse oximeters, oxygen by nasal cannula held on by tender grips. McKenzie had an NG tube for several months after coming home, but never had to get a g-tube. All that medical equipment is a thing of the past for Miss McKenzie, so when she sees it with Evan it is new to her.

McKenzie is very interested in Evan's MIC-key button, and always wants to see what is going on when Evan eats. Michelle always explains, "He's eating, and his food goes right into is tummy." McKenzie wanted to know exactly what Evan was eating. Yesterday, it was a peach/banana fruit mixture with some Pediasure. Jeremy asked if she wanted to try some in a cup. McKenzie isn't really a fan of eating much these days, and shook her head no. She wanted Jeremy to try it for her. So he pretended to pour some into Evan's empty vent tube, and proceeded to "plug it in" to his stomach (somehow, Jeremy was able to wedge it in there so it stuck). "Mmmm, mmmm," he said. "Are you sure you don't want any?" She shook her head again, but when Jeremy was finished, McKenzie took Evan's vent tube over to her daddy to see if he wanted some also (he passed--too full from all the Super Bowl snacks!).

I wish that every kid could learn about g-tubes the way that McKenzie has. To her, it isn't gross or's just a way to eat that's different from the way she does. She is naturally curious, and she gets factual answers to her questions.

We are also preparing for Evan's "graduation" from Birth-to-Three into the school system. He will be going to Head Start preschool. I wonder how his classmates are going to react to his eating (and venting) that will undoubtedly happen during class. I hope that they become just as accepting as McKenzie has...I can only wish for them to be as good of helpers!