Friday, February 27, 2009


Wednesday, February 18, 2009

"What we have here is an ability to communicate..."

We've been working hard on enabling Will to communicate... he's shown us so many times that he understands and has an interest in what is going on around him. So now we want him to realize that he can impact the world around him also. For several months, we've been working on making Will's clicking noise into a "yes" response. For instance, we'd tickle him and then ask if he wanted more... if he clicked, then we tickled him again. But we were finding that the clicks were a little inconsistent and if Will got really excited about something, he'd just click and click and click.

So we started looking for something a little more consistent for him. Several of Will's therapists recommended that we try a recordable communicator, like the Big Mac. If you look at the video above, the yellow button on Will's left is the Big Mac, and the green one on Will's right is the aptly named Little Mac. Basically, you can record a message on the recorder so that when the button is hit, the recorded message plays. The only differences between the two are the color and button size.

In other conversations with therapists and through our own observations, we've determined that it is "easy" for a special needs child to remain like a baby because (in Will's case) he continues to need assistance with eating, positioning, etc. and is slower with reaching developmental milestones such as speaking. So we've made it another goal to "toddler-ize" Will in an appropriate manner. To do this, we are going to give him choices and allow him to be have more control over his situations. The Macs allow Will to tell us what he wants.

The video doesn't have the greatest sound, so for your understanding of what is happening, the green Little Mac on Will's right says "more" and the yellow Big Mac on his left says "all done." Our first stop in Will's "toddler-ization" is to allow him to tell us when he wants more food, and when he's had enough. Solid food feeds occur three times a day at our house, so this is a lot of consistent daily practice for Will to communicate!

He's definitely getting the hang of hitting the "more" button when he wants more food! We're still working on where to place the "all done" button so that he can reach it regularly, but because Will has limited movement in his left arm, its a little more of a challenge. I think you'll be able to see from the video that he's enjoying the cause-and-effect of telling us what he wants and then having it happen! He's also showing us that he's a little comedian by biting down hard on the spoon.

Nate and I couldn't be prouder of him! And we're so excited to continue to use the Big and Little Macs to allow Will to communicate different things in different situations, as well as continue to enable him to make choices. Cool Hand Luke also enjoys hitting the Macs... though we think he just does it because we ask him not to!

Friday, February 6, 2009

Old Man Face

We got Will's blood test and echocardiogram results back yesterday. His heart looks great, but his blood potassium level is elevated... not HIGH... just elevated. And being elevated for a long time can cause organ damage. The elevated potassium could be due to one of two things: Will's blood pressure medication or his love affair with bananas.

Sooo... we're experimenting over the next two weeks. We've eliminated all things potassium-rich (bananas, sweet potatoes, etc.) from Will's diet, and he will have another blood test done in two weeks to see if it made a difference. If it didn't, then we will switch blood pressure medications, and try the blood test again.

Tonight Will got a lovely chicken noodle stage 2 baby food. He didn't like it... hence the Old Man Face. We realized how tough it is to find interesting baby food WITHOUT bananas, too... might be time to bite the bullet and start making more of our own concoctions. Watch out!

Thursday, February 5, 2009

The Little Gymnast

In an effort to start "socializing" Luke, we have enrolled him in a class at a local baby gym. Once Opa is done in Iraq, Oma will go back to Texas, and Luke and Will will start going to a day care center. We thought it would be cruel to drop Luke off at day care on his first day (being that he is used to being just one of two kids being cared for by one doting adult) to be surrounded by a large group of strange kids and an adult he didn't know...

So its a parent-child class and occurs once per week. There are about 10 other kids in the class... so this is like baby steps towards day care. On the first night, Luke had a tough time. He stayed close to Nate's side (I watched through the glass with Will). He didn't want to walk, he didn't want to sing or clap, and at the end of the night when he finally got up some nerve to walk away from the group, he didn't understand it when he yelled "hi" to the group and no one paid attention. I think it hurt his little toddler ego a little bit to realize that he wasn't the only cute kid around.

Tonight was a much different story. Luke clapped, sang, showed everyone that he could do the "wheelbarrow" and even made a couple of girl friends. I don't think he cared about any of the other boys that were there though! He definitely had a good time. Check out our little gymnast in the photos below!

Luke and the balance beam... just getting warmed up

The parallel bars... this is more like it!

Thank you, thank you, this is so much fun!

Look at me baby... I am soooooooooooo big!

Tuesday, February 3, 2009

Monthly weigh-in

Quick update today... the boys went in for their Synagis shot this morning (number 4 of 5... almost done!). Before they get the shot, they get weighed because the Synagis is weight-dependent. Both boys gained 5 ounces last month, putting Luke at 24 lbs 11 oz (that's why your arm hurts right now, Mike Kelsey!) and William at 21 lbs 8 oz. Luke has been gaining weight steadily so we haven't been watching his weight as closely. But Will continues to pack on the ounces, which is great! He has gained almost two pounds in the past 4 months. He's not quite on the weight chart yet (he would have to be 23 lbs right now to be in the 5th percentile) but we're getting there and every little suck or bite or swallow is progress!