Whenever you see families with special needs children (and I guess when people look at us), you wonder how they do it. How do they deal with the extra challenges day in and day out? The answer really is that you get used to doing things differently; it becomes normal. We have been tubefeeding for over a year to the point where going out and hooking up the baby while out and about is really not a huge deal. We have our extra bag and extra feed kit and it has just become part of the process.
A week ago, we decided to try giving Gabriel all of his food orally, since he was eating so well. We wanted to see what his benchmark was; I didn't really expect him to take everything, but I wanted to see where he stopped so we knew what to work toward. To our surprise, he has been taking ALL his calories orally. Every day. And so now we have to adjust to a new normal. One that doesn't included a food pump, feed bags and endless use of the Blendtec. We aren't tube free, he still doesn't drink, but all that is going through that tube is water and medications. Every morning I wake up and wonder if it's all going to just go away, but after a week, I think eating is here to stay.
So now we're trying to think more like those other parents. The ones that have always spoon-fed their children. We can't just hook him up to his lunch on the drive home from church; we have to make time and space to feed his lunch by spoon. I even packed up his pump and put it away, although we will keep it awhile in case he backslides. It's odd being the parent of a "special needs" child that will eventually outgrow his "special needs". You sit on the fence between the two, not really belonging to either group, but trying to understand the challenges of each. We'll keep trying. And in the meantime, hopefully Gabriel will keep eating!
Tuesday, January 14, 2014
Wednesday, January 1, 2014
The gift of St. Nicholas
When we first started our g-tube journey, we heard from several sources that at some point the child would appear to have been visited by the "feeding fairy" and just GET IT. Like a switch flipping or the little cartoon light bulb clicking on above their head. Well, it's been a year and a half since we got the g-tube and it looks like the fairy has finally paid us a visit. I'm convinced the fairy's name is St. Nicholas.
St. Nicholas day is celebrated on either Dec. 6 or Dec. 19, depending on whether you follow the modern (Gregorian) calendar or the old (Julian) calendar. Between the two celebrations, several things happened. My husband had two very promising job interviews and and Gabriel got sick. It was just a mild GI bug that had us feeding him pedialyte and chicken broth for a day or two, and resulting in a very hungry baby. During this time we were praying to St. Nicholas both for a good outcome on my husband's interviews and for Gabriel's health. On a whim, when Gabriel seemed to be keeping some light tube feedings down, Thomas tried spoon feeding him, and he did fantastic, proving to us that the skill set was in there somewhere. However, over the next two days, his spoon skills declined back down to the occasional tastes. On St. Nicholas day (old style), I discussed starting hunger trials with Gabriel after the Christmas break with his therapist. During the chat, we were talking about how ideally, Gabriel would wean himself off the tube as he took more and more spoon food, and I said (and she concurred) that I didn't think that would happen with him. Silly me.
The feeding fairy (a.k.a. St. Nicholas) must have visited us that night because the next morning, Gabriel started eating from a spoon as if he had been doing it forever. In fact, he has been doing so well, that I just cut his tube feedings by half three days ago and spoon feed about a 4-5oz. of food into him at each meal. It is a lot to ask of him -- going from full tube feeds to requiring that he take half by mouth, but he doesn't seem to mind. We normally make his tube food every five days, but this time, when we run out, I think I may just see if he's ready to go all the way.
Gabriel still does not drink. We've been concentrating on spoon time, so cup training has suffered, but that will be our next goal. Even so, pushing fluids through the tube is a lot easier and faster than waiting for a meal to be fed via tube. At the rate he had been going at the beginning of December, I thought we would still have a year or so on the tube as we slowly weaned him off, but maybe we will have a Pascha (Easter) miracle this year! It's all up to him...through the prayers of his Saintly Guardians.
Oh, and yes, my husband got the job, too! :)
St. Nicholas day is celebrated on either Dec. 6 or Dec. 19, depending on whether you follow the modern (Gregorian) calendar or the old (Julian) calendar. Between the two celebrations, several things happened. My husband had two very promising job interviews and and Gabriel got sick. It was just a mild GI bug that had us feeding him pedialyte and chicken broth for a day or two, and resulting in a very hungry baby. During this time we were praying to St. Nicholas both for a good outcome on my husband's interviews and for Gabriel's health. On a whim, when Gabriel seemed to be keeping some light tube feedings down, Thomas tried spoon feeding him, and he did fantastic, proving to us that the skill set was in there somewhere. However, over the next two days, his spoon skills declined back down to the occasional tastes. On St. Nicholas day (old style), I discussed starting hunger trials with Gabriel after the Christmas break with his therapist. During the chat, we were talking about how ideally, Gabriel would wean himself off the tube as he took more and more spoon food, and I said (and she concurred) that I didn't think that would happen with him. Silly me.
The feeding fairy (a.k.a. St. Nicholas) must have visited us that night because the next morning, Gabriel started eating from a spoon as if he had been doing it forever. In fact, he has been doing so well, that I just cut his tube feedings by half three days ago and spoon feed about a 4-5oz. of food into him at each meal. It is a lot to ask of him -- going from full tube feeds to requiring that he take half by mouth, but he doesn't seem to mind. We normally make his tube food every five days, but this time, when we run out, I think I may just see if he's ready to go all the way.
Gabriel still does not drink. We've been concentrating on spoon time, so cup training has suffered, but that will be our next goal. Even so, pushing fluids through the tube is a lot easier and faster than waiting for a meal to be fed via tube. At the rate he had been going at the beginning of December, I thought we would still have a year or so on the tube as we slowly weaned him off, but maybe we will have a Pascha (Easter) miracle this year! It's all up to him...through the prayers of his Saintly Guardians.
Oh, and yes, my husband got the job, too! :)
Subscribe to:
Posts (Atom)