Alex gets a new Tripp Trapp high chair

About a month ago, Alex got a new Stokke Tripp Trapp chair to better position him at the table. The design is ingeniously simple, as you can see from this video (which comes with an extra helping of Alex/teddy bear cuteness on the side):

Previously, Alex was sitting in a Wenzelite Seat2Go strapped into a regular kitchen chair. It was bulky to move, and because there was no foot rest, every time his spasticity made him straighten out his body (which happens every time he gets excited), his butt would scooch forward a little, which would leave him in a slouched position. It also forced him into a reclining position, and was difficult to clean because it was made of fabric. The Tripp Trapp chair is light, gets him right up to the table in a good position, and is easy to clean.

Contents of the box

It’s relatively easy to assemble; I figured it out in about 45 minutes. You can price them at Amazon, although you might find them cheaper elsewhere. Thanks to Alex's godparents for once again stepping in to help out!

I love you...SO much!

Susan posted this to Facebook, so you might have already seen it there, but it seemed worth cross-posting here as well:

A recent Alex moment: Alex got a big bang on his head (accident) while we were visiting relatives, and began to cry (very unusual for him, he does not cry--so he was hurt!). My other kids ran to get me, and I came out and took care of him (ended up holding him for an hour, although he was calm after a few minutes). He's been processing this for days now, although the bump doesn't seem to hurt him.

Alex: Mom, why you go outside for me?
Me: Why do you think, Alex?
Alex (whispers): Because I was crying.
Me: Yes, you were crying because you were hurt, right?
Alex: Yes. But why you come?
Me: Because you are my little boy and I want to take care of you. Because I love you.
Alex (smiling big): SO much.

I think he is processing this because he likes hearing me say that: I want to take care of you. I love you. (and he always adds "SO much.")

Alex trains for the U.S. Winter Olympics luge team

 

Big announcement! Drumroll, please! After witnessing Alex’s stunning performance on the sledding hill on Sunday in -20 degree Fahrenheit (windchill factor) weather, we have decided to allow Alex to fulfill his aspiration to join the U.S. Winter Olympics luge team! As you can see from the attached video, he’s a natural. Not even a major wipeout could keep him down! No, he was ready to “do it again” right away!

Seriously, Alex did enjoy sledding a lot more this year than last year. For the most part he went down with one of his siblings or alone, backwards (facing uphill). As long as he was sent down straight, he did fine. (At one point you will see me advising him to go down straight to avoid flipping; of course, in retrospect, that was a dumb thing to say!)

Coming up soon, we’ll be posting Alex’s newest adaptive seating solution—a Tripp Trapp chair.

Now for the highlights reel:

And finally, the hot chocolate:

A Sweet Moment

I put Alex to bed tonight and he said (as he always does) "You going to work now?" (He means work on the computer in my room.)  I said "A little, but I want to go to bed soon because I don't feel good.  I am sick."  Deep concern.  "Oh no, Mom.  Where do you hurt?"  "My head hurts and my tummy hurts.  I'll be OK, I just feel sick."  He reached out his hand to touch my forehead (like the sign of the cross--we do thatwith our kids before they go to sleep).  I asked, "do you want to pray for me tonight?" He said "Yes..."  Then he folded his hands and said:

"God, please help. Mom sick, help her get better.  Better in head and in tummy.  Amen."

I gave him a big hug.  Not only was it a heartfelt prayer, it was a pretty extended train of thoughts expressed at once for him.

The Great Modular Wheelchair Ramp Saga

After sixteen months of bumping Alex up and down our front steps (while holding the storm door open) every time he needed to get to the school bus or our car, we finally installed a wheelchair ramp—yay!

I didn’t find much online when I went to research what it would take to get a wheelchair ramp on the front of our house, so forgive the detail of this rather long post—a lot of it is provided for others who might be looking for similar information and who might benefit from our experience.

I suppose there’s another reason for going into detail about what it took to get Alex his wheelchair ramp. What we’ve learned over the past eighteen months is that people with physical disabilities live in a parallel world—one in which everything is about ten times harder to accomplish than it would normally be.

Heck, getting a wheelchair ramp—just to be able to get in and out of the house safely—proved to be an epic saga, full of ups and downs. (Sorry, couldn’t resist.)