A Strong Spirit

One of the most beautiful things to witness is the natural development of a child. To see them progress from totally dependent infants to independent little toddlers is remarkable. I think that’s one of the reasons I enjoyed my job in ECI so much. Yes, we were “intervening” and working hard at accelerating developement, but there were these magical two-week breaks twice a year when the most amazing development would occur. A two-week break from therapy seemed to be the perfect amount of time. Child after child would reach goals we had been working on for months. So many changes, so much progress, in just two weeks.

As it turns out, the opposite can be true as well. Two weeks sedated on a ventilator can cause the most astounding regression in development. While James’ body was healing and fighting off illness, his muscles were becoming weaker and weaker.

Prior to his hospitalization, James was a BUSY little guy. He was an explorer. He went up and down stairs, climbed onto furniture – the hardest way he could find, and he was fast. He didn’t run yet, but he could move quickly when he wanted to. He played hard all day. And James was a pretty good eater, all things considered. He was picky, but on a good day he ate a lot of food.

As James came off the sedation meds and was more and more alert, it was truly shocking to see how weak he was. Our little boy couldn’t even sit, let alone stand or walk. He was interested in food and drinks, but was coughing and choking regularly. The muscles used to swallow had gotten weak, and he now aspirated what he used to drink so well. I knew James would regress some, but I had no idea to what extent.

James has made remarkable progress on his motor skills over the past two weeks. He is now pulling to stand, cruising, and walking with one hand held. He even took a few steps on his own yesterday. Though they were wobbly, he did it! I am not concerned about his motor skills returning. He is absolutely determined to move and explore. I just know he’ll be back to walking, climbing, and probably even running, before we know it.

My biggest concern is his feeding. He regressed to the point of taking nothing by mouth a few days ago. The feeding program he’s going through is very structured, and parents are not involved in the beginning. We are, however, allowed to give a snack in our room in the evening. I was just sure he would eat for me, that is until I opened the apple sauce and he gagged. Not sure if it was the sight or smell of it, but there was no eating of apple sauce, even when I tried to feed him.

So now my precious little boy who worked so hard to learn to walk and eat once, has to learn it all over again. His day is full of therapy from early morning until late evening.  I’m truly thankful he has such a strong spirit and willingness to fight through each obstacle he encounters. I can’t wait to see where this all leads. I’m anxious to witness the natural development of James. I know he will accomplish great things because nothing is stopping this little guy!

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