Tommy on the Go & Food News

On Friday I had to get a new prescription for Thomas' formula. It took us a long time to find a formula that would not give Thomas tremendous gas or make him throw up, so it's worth it to jump through some hoops to get it. So on Friday we had to go to the doctor's office to the new prescription filled out.

It's a busy life!

It used to be a huge deal to take Thomas on an errand but Friday was a completely different story. He walked hand and hand with me through the parking lot and into the building. He waited for the elevator with me and when the "ping" of the elevators sounded he followed me inside the doors. He waited patiently and when he heard the "ping" of our floor, he stepped out of the doors with me - no prompt needed. (I do narrate many things for him along with describing what we are doing and where we are going. )

Our amazing doctor's office got the paperwork completed in about five minutes and we were on our way again. Another smooth process where he walked with me and followed along effortlessly. I'm not even sure I can call it following along when we were in the building. He was right beside me and I wasn't pulling him along like in the past.

I am one proud mom!

Just last summer walking in public looked like this.

Every outing used to be exhausting for both of us. At first he would only walk with us when holding both our hands, but gradually he accepted walking holding just one hand. That was a big step.

Then we worked on taking steps in public instead of being carried. I would ask him to take just 5 steps in public and then carry him the rest of the way, all 30ish pounds of him. And that's not easy when juggling a big mom purse filled with diapers and kid stuff, car keys and coats... Then I began to up the ante every time. Just take 10 steps with me. Just take 15 steps with me. And I would always count the steps with him out loud and praise him for walking like a big kid. Now when we go to his therapy at the Children's Institute he walks through the entire parking lot with me and into the building.

I think doing his Orientation and Mobility (O&M) training at the mall helped a lot also. He is around so many people and sounds in the mall as he walks around with his therapist and I. The last time we had O&M at the mall he even requested we stay longer! Since Tom only speaks a bit you may be wondering how he did that. I asked him if he was all done, which he knows in sign language, or if he wanted to stay some more. He told me, "Go!"

Food News!

Tommy is really eating some food these days and it's not just tastes anymore. I almost can't believe my eyes when he actually swallows food. We have seen tremendous improvements during therapy this past month at the Children's Institute.

I can't tell you how many times I have welled up with tears this month, watching him swallow food or seeing him eagerly lean into a spoon for a taste of food. Just two months ago I would have never believed it. I think all of our slow steps and steady encouragement have allowed him to feel comfortable and take some risks he would never have before.

Double fisted! Ravioli and Garlic Bread.

Right now we are giving him several opportunities a day to snack and eat from a spoon so he can practice his new eating skills. If we can get him to eat a measurable amount of food regularly we can begin to wean his tube feeds down. Yes, I said wean his tube feeds down!

Yum!

If you are close to the Pittsburgh area and have a child with feeding issues, I recommend the Feeding Program at the Children's Institute of Pittsburgh without reservation!