In case you were wondering, I DO still have a son named Theodore. He IS still simultaneously adorable and a pain in the butt. Lots of changes have come his way and are still coming for this little man, but here is where we are currently:
Per the doctor's orders, he has been trying new foods so that we can hopefully accomplish a swallow study. By "try new foods" I mean, we are attempting to get him to put anything in his mouth and swallow it. Theodore acts like he wants to eat food; he gets very excited when he sees it and asks to have some. However, all that leads to is maybe a tiny lick off the spoon and then instantly wiping his mouth with whatever he can find to remove said food from his mouth.
Despite this, though, we have started to accomplish our goal. We have found a great sippy cup for him, we are experimenting with puree type foods and different drinks, and even succeeding in getting something into his stomach.
Great, right? Well, I guess it depends on who you are. Great for the swallow specialist. Great for hopefully gaining some results from the upcoming test. And great for Theodore who is finally getting to experience some real food. Not so great if you are home with him for an extended period of time.
His digestive system is in an uproar. Whatever is happening inside his stomach and bowels is pure chaos. It's taken about a month to catch up to him, but catch up it has.
If he's not sleeping he's pooping. And pooping and pooping. It is wearing this poor boy and his butt out. Now every time he sees us coming with a diaper he cries because of his insistent diaper rash (which is on the mend, thankfully). We have taken away all extra food for the moment, and are rationing out his normal Pediasure feedings so that his body is actually maintaining some nutrition. And, quite honestly, he does not appear to be missing the real food at all.
Finally, after a week, his body is recovering. The doctor and I might be on different pages at this point, but I'll let the doctor have a say when she's the one here changing his diapers and dealing with his aggravated behavior. (Not that I blame him for being aggravated.)
I, more than anyone, look forward to his decanulation, but not at the expense of the rest of his body. (I guess I should say that a swallow study is one of the first steps, at least for Theodore, in working towards getting his trach out.) He never has done anything on anyone else's time frame - especially the doctor's - and he's not changing that now.
Slow and steady continues, but it is forward motion.