My son is 2 years old and 10 months. Isaac is off the home ventilator all day and is starting to wean from the ventilator at night. He is trached and also has a g-tube for eating. He is non-verbal, mobile but not walking yet and is just beginning to do some tasting with his speech therapist.
We spent the first ten months of his life in the NICU since he was born premature at 25 weeks. In the hospital, there were services available to him as far as physical therapy and occupational therapy. But they had to give way whenever he would have a setback in terms of his pulmonary health. So the opportunity for therapy was nil to none.
When we came home, he was in such an acute state that even when he had regular PT, OT and ST we found ourselves regressing every time he would get sick and we had to stop all therapy. We managed to stay away from the hospital and managed it at home with the nurses.
As I am typing this now that Isaac is 8 years old, happy and thriving, I would have given some precious advice to the old me. At that time, we were happy to just see him bounce on his bouncer and watch his numerous videos. The play he had was mostly on his own. How I wish I could have known to interact with him more and play face to face with him. As a parent of a trached child we also had our own demons to contend with. Looking back, it was like being in the dark and I am just coming out into the light now. My advice to parents now: keep interacting with your child and make sure you give eye contact so that they are aware that you are there in their world and you can also bring them to your world. The very best thing I did at that time was to read books to him. I was a school teacher so I kept all of my books that I read to my pre-schoolers. This is why Isaac loves to watch his nursery videos in different languages. To all parents out there, treat your trached child as normal as possible. It is okay to feel fear a little bit because that makes us cautious but don’t ever let fear get in the way of them trying to live a normal life.
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