Friday, December 4, 2009

Jax is wearing his mini backpack!

During Jax's speech therapy this morning, his therapist (Mr. Nick) said that Jax looked more than ready to try his backpack again. This was after we had to chase him down multiple times to work with him, and the tugging at his tube-site was causing some stomach acid to leak from his stoma site.
Well his occupational therapist (Miss Karen) came in and she agreed with the speech therapist that we should try again. So during Jax's occupational therapy session we hooked him all up and we crawled around on the floor and we were able to get him to move. After 20 minutes or so, he was crawling around, standing, walking along furniture and crawling through his play tube. I kept the ice pack out, and it seems to work well for him. I'm so excited to give him (and us) this freedom.
I must add that the day we received the backpack from the medical supply company, we watched a DVD on how small children can have an active free life with this "gear". I remember watching the little boy on the DVD and scoffing that it would be awful having a small child needing to live off a tube connected to his back. This was when Jax was 4 months old and we believed his reflux would be over at any time. Well here we are...cheering Jax on for being able to wear it. How my views have changed... I no longer look at his feeding tube as the enemy, but a part of him that allows us to have him. I'm not saying I don't still cry myself to sleep once in awhile thinking about all of this, but there does come a point in your life when acceptance can lead to a little more happiness. I'm always working on this...
I just want Jax to know the world as normal as possible, and I know the day where he asks me "why" is approaching. I just hope I have an answer figured out for him by then.

How handsome and independent does this little stinker look???


4 comments:

Deanna said...

I have read your blog for awhile, but I'm not sure if I've ever commented. Anyway, your post today brought a few tears to my eyes! I am glad to see little Jaxon making so much progress. You seem to have a great attitude in dealing with all that you have been through. I know it has to get stressful at times!

Jenn said...

How heavy is the backpack? Will it get heavier? Thinking as he grows and goes to school and stuff...just curious...no need to share if you don't want!

Laura said...

Awesome. I noticed that my guys do better on bolus feeds when they are active and throw up less. I'm going to have to start making them wear the bags more often than I have been.

NormalOnesLeft said...

Yea Jaxie!!!! Way to go buddy. You look like a mini kindergartener!!
Love you,
Auntie Krista