First, thank you. Unfortunately, it’s not that simple. If only getting to a low side of normal weight automatically made my son want to eat and drink enough to sustain himself. That would make everything so much easier. There’s something I need to share with you while we’re on the topic.

My child is healthy because of the tube. If not for the tube, he would still be off the bottom end of the growth chart. For the first year of his life he gagged on anything put into his mouth besides formula (and sometimes that too), so he wouldn’t have been able to take any medication. We suspect its because of his medication he eats what he does. He has all the behavior symptoms of GERD (gastroesophageal reflux disease) when left untreated.

No more gagging on everything enabled him to learn to drink. He’s in the process of learning how to chew. Those few bites of chip or cracker don’t look like much, but he’s only been biting them off for a month or two. Until this past month, they were gagging him.

Adequate nutrition has allowed him to progress at a normal rate through his motor skills. Cruising doesn’t look impressive until you know he couldn’t hold his head up at six months old. A lot of therapy later he’s getting ready to walk. He’s already holding on just for balance sometimes. I’m going to be completely overwhelmed with emotion the day he takes his first few steps without holding on. It’s been a long journey.

We would like to wean him off of the tube one day, but most of the time he’s barely gaining enough weight with its help. For now, we’re happy he’s healthy AND has a tube. We’ll take the rest day by day.