Archive for September, 2009

Turning 6…

September 18, 2009 | Updates

Samuel’s birthday this year came at the tail end of one of our reunions, which was perfect! The actual day of his birthday was a huge game day at our reunion so there were lots of fun activities for everyone to participate in and, at one point, everyone sang Happy Birthday to Samuel. And when I say everyone, I mean like 100 people! That was fun to watch!

The day after Samuel’s birthday, we threw a big party with lots of grandparents, a few aunts and uncles and all his brothers. It was a fun party with pizza, cake and lot of gifts. Samuel was really happy all day. He seemed to really enjoy all the attention. He was so cute opening his presents because Nathan really wanted to help and kept stealing them away from Samuel. Samuel sure was good at keeping his eye on all the gifts, though, and making sure Nathan didn’t get too far away :).

At the end of the party, as we were all talking about how happy Samuel had been and how much fun he seemed to have had, I realize something. There have been 4 birthdays since his accident, and this is the first one that was really good.

Last year, Samuel was pretty much upset all day. The year before that, he was tired and sleepy through his whole party. And the year before that, he upset during his party and didn’t do very well. It took a lot of singing and dancing just to get one happy picture that day.

This year, it was different. Samuel was happy, all day. He was content. He wasn’t off-the-wall wiggly. He was attentive. And he was so very, very cute. It was such a satisfying thing to watch him actually ENJOY his birthday party! Yea, Samuel!

Here’s to hoping for more good birthdays for Samuel in the future because if anyone deserves a nice birthday, it’s him! Enjoy the pictures below and a short video, if you’re interested!

PASSWORD IS birthday.

Love,

The Jewkes

Posted by admin @ 7:06 pm | 6 Comments

The best post EVER…

September 11, 2009 | Updates

Ok, this is out of order because I have a few more old posts to put up still, but I HAD to add this one now because it is so incredible!

Here’s the setup for the video below. Every night, after Samuel falls asleep, I go into his room and hook up his ABR machine and overnight feeding with his pump. It’s quite a task and takes me about 20 minutes to do. Tonight, I had more fun than I’ve had in a LONG time just getting his stuff hooked up! In addition, you have to know that I have been telling people for the last 4 years that Samuel is an expert at faking sleep. That kid can keep his eyes closed through ANYTHING if he really wants to (apparently, he’s not as good at hiding his smile, though). I took this video AFTER I had everything hooked up, so this had been going on for about 20 minutes and Samuel DID NOT open his eyes ONCE. NOT ONCE! I tell you, that kid has way more self control than I do! And he uses it to his advantage to get out of all kinds of therapy. Stinker! But so cute!

Oh, and I had to turn the lights off for most of the video because I really did not want him to wake up. He hates the ABR machine stuff and won’t wear it if he’s up and wiggling around. Plus, he was way funnier when the light was off. Not sure why! I guess he thought he really was being goofy then.

Enjoy! The password is laughing.

Samuel Laughing .

Posted by admin @ 10:38 am | 16 Comments

Oh how I love summer…

September 9, 2009 | Updates

July was, well…crazy! Lots of fun, but SO.VERY.BUSY!

First, there was Kaylee’s wedding shower. I’ll save my personal feelings of not wanting her to grow up for another post. For now, here is Samuel feeling the bows we wrapped on her head as she opened her gifts. Not so sure he liked it :).

Next were family reunions. So much fun! I’ll let the pictures mostly speak for themselves…

Samuel enjoying some time in the sun…

Waiting their turn in the games…

Lots of good, old fashioned fun…

Hanging out with Daddy…

Makeshift umbrella…

Um, yea, my husband thinks sticking your finger up your nose for pictures is funny.
Me, not so much…

Samuel was PERFECT for all our reunions/vacations. I’ll tell you what. Summer is his THING. His seizures literally disappeared from mid-June until mid-August. And he was about 1/2 as wiggly as usual. It made caring for him SO MUCH EASIER. And he LOVED sitting outside. He would sit outside the motorhome with his cousins and other family for hours at a time and just be completely peaceful doing so. He didn’t throw up or spit up hardly at all. He even tolerated long car rides MUCH better than his brothers. And he was oh-so-very-smiley. Watching him during these 2 months made me think that if he was always like this, I really could teach him how to read. And the best thing…he started laughing…A LOT! But I’ll save that good news for a later post.

Here’s to hoping your summer was as good as ours!

Love,
Teresa

Posted by admin @ 11:52 am | 4 Comments

Dynavox Eyemax Trial…

September 6, 2009 | Updates

(This post was written in June of 2009.)

I know you’ve all been breathlessly waiting for this post (at least that what I tell myself). So, here’s the skinny on Samuel’s trial with the eyegaze computer.

First, it took me an ENTIRE day to get it all set up the way I wanted it and mostly to figure out how in the world to download movie trailers from itunes and then convert them into the right file type to work with the Eyemax. I won’t bore you with the details. It just took a LONG time.

Then, we started trying to use the system. But the battery on it wouldn’t charge so we had to keep it plugged in all the time and I couldn’t get the mount to work so we had to prop it up with books, which was a pain. However, we used it anyway (until I got tired of it and asked them to send me a new one which worked out great because it extended our trial from 12 days to about 20).

And here’s our experience with it. To my chagrin, Samuel wasn’t too “into” it. That confused me for awhile, but now I think I get it. You see, everytime I would ask him a question he could answer with the eyegaze, he would look at me and answer the question with his eyes, facial expressions or voice. I don’t think I’d ever realized how much he really does communicate with us despite his inability to speak. And you and I would think that being given the chance to talk would be the most incredible thing if you couldn’t talk on your own. But I don’t think Samuel remembers ever being able to talk. So, not talking is all he knows. And talking with the eye gaze computer is much more work than just looking at me and smiling. Our communicative person with the school district put it well when she said that, “Nothing has ever been expected of him before and now it is.” That’s a big change for a kid and maybe one he doesn’t necessarily want.

So, in the end, we worked on it for 30-60 minutes per day. It would have been niced to work more often, but Samuel simply would not tolerate more. (I was pushing it to get the hour out of him.) And he was pretty clear that he didn’t like the computer and didn’t want to use it. But at the same time, he did learn how to navigate a good portion of it during the trial. By the end of the 20 days, I could tell what his favorite things on each page were and I could almost always predict what he would pick. That tells me that he “gets” that there are consequences to each choice and that he knows he can control those consequences. That’s a good thing.

So, I’ll leave you with this video of him using the eyemax on the last day we had it. I realize after watching it that it appears that it takes the computer a really long time to pick up his eyes and “click” on his choice. But it actually only appears that way because you can’t see Samuel’s face in much of the video. Most of the time when we are waiting, I am waiting for him to stop looking at me and look at the computer instead. Like I said, he’s not really “into” it. But when he does look and try to use it, it picks up his eyes pretty quickly and can figure out what he’s looking at within a second or so.

The movie is a bit long, so don’t think you have to watch it. But for those of you who are interested…voila! Password is dynavox.

Love,
Teresa

P.S. Just in case you were wondering…yes, there is a life jacket on the floor in our front room in this video. And, yes, it does reside there whenever it isn’t being used. And, yes, it does have a piece of fabric duct taped to the back of it. And, yes, the 3-year-old does think that this life jacket is a Bat Man costume (and a seriously good one, may I add).

His mother may have put it on him and showed him how tough it makes him and how invinsible to punches he is when he has it on in an effort to get him to want to wear it whenever he goes outside. It may have worked. And you may find him swinging in the front yard with his Bat Man jacket on at any given time during the summer. When you ask him what he’s doing, he’ll probably tell you he’s flying. This type of crazy costume making to get a 3-year-old to wear a life jacket in the front yard in the summer heat may or may not be good for his health. But it is definitely good for his mother’s worrying mind. Just saying…

Posted by admin @ 3:27 pm | 5 Comments

Birthdays…

September 3, 2009 | Blogroll

(This post was written in June of 2009.)

We’ve had a lot of birthdays the past few months.

First, there was Weston’s. He’s officially a teenager now, although I don’t think he will ever prove to be too difficult of one :). Kaylee made him a butterfly cake and he got good things - like frogs and games - things boys love. (Things to note in the picture below: Nathan helping blow out the candles and Samuels feet in the air :)!

My birthday was next. I turned 29 for like the 8th year in a row. It was great! I got to go to dinner and everyone gave me sweet gifts.

And last was Nathan’s birthday. He got a bouncy horse just like the one he accidentally almost stole from the baby animal days store. He loved it. He also got cowboys and horses (do we see a theme here)? And a nice big dragon. His favorite thing, though, was blowing out the candles. He did it over and over and over again. But he wouldn’t do it if we didn’t sing first, so we did A LOT of singing. It was a fun day and now my baby is 3.