Every Step of the Way...16 Days Until the Race

Toby began to really grow and change; he was finally hitting some milestones, and he began to get ornery.  A ventilator has auditory alarms, so if it becomes disconnected or has too much or not enough air pressure you will know it. I can't even remember how old he was, but he learned around 16 months or so how to cause too much air to come through his ventilator tubing to set the alarms off so we would come running and see what was the matter.  He also would untie the ties that held his ventilator on to his trach so we would see what would happen.

Some of his favorite play things were his suction tubing, suction catheters, and ventilator tubing, etc. I love these above photos because he was sneaking into his suction bag to see how much he could unload out of it.

His favorite play things!

We also learned fairly early on that Toby had a really fun sense of humor.  He would laugh a lot, and even now he says a lot of really witty things that just crack everyone up in the family.

In this picture, Toby hid his pacifier inside of his onesie, and you can tell by the middle photo that he thinks it's very funny.

At first when Toby came home from the hospital on a ventilator full time, I had little hope that he would ever be able to walk or handle a manual wheelchair.  With all of that equipment - where in the world would you put it on a manual chair?  Our first chair was an Otto Bock Kimba.  It was a medical stroller that had a ventilator tray underneath; a place for the HUGE car battery we needed to give the ventilator power (before lithium ion batteries for ventilators),  oxygen tank holder, etc.  It was great, but it was very heavy.  I do remember being so excited when we graduated from the double stroller - with Toby in back and ventilator in front to the Kimba.

Here's the Kimba; and oh my goodness those cheeks:

Around the age of 22 months we began to talk to Help Me Grow, who did therapy in our home through the county about a manual wheelchair.  They worked it out with Columbus Medical to outfit a manual chair with a ventilator tray on the back.  Some doctors, etc. had told us that it couldn't be done; but the guys there work (and are still) working miracles.  Today, a new friend's son has this chair - it's actually been passed on to two kids we know in the area with Spina Bifida - both of them have trachs.

Now, that ventilator weighs about 17-18 pounds.  It's heavy, so at first it took him awhile to be able to move that chair very well, but he did it.  When Toby was a little over 3, and we had to give the chair back to Help Me Grow (they graduate out at the age of 3 and are then serviced through the counties' board of developmental disabilities); we began to look at other chairs for Toby.  At the time, I will admit that I didn't do enough research, and just accepted what they told me insurance will cover.  Toby was just coming off of his ventilator for short periods during the day time, so they did outfit this chair so it would also support a ventilator. We had to plan for the "what-ifs" at the time, and unfortunately it made the chair extremely heavy.
This is also the chair he has now, although it's been modified recently to make it lighter.  We are hoping in a few years he can get an even lighter, sportier chair.  Stay tuned, tomorrow we're going to share about walking and talking!