So as you know, Nolan is still on a feeding tube and that has been an immense challenge for us (and him). After Nolan turned 1, he was moved from formula to PediaSure. At first it was pretty convenient: they came pre-mixed in little bottles: just open, pour, and start the feed pump. Otherwise, though, it wasn’t too great. Nolan spit up a ton while getting PediaSure…and the stuff smells disgusting, especially the strawberry one…BLECH. So after awhile doing this, Bekah came up with the idea of seeing if we could give him a blended diet. After all, Grant was eating regular food…why can’t Nolan? Not to mention that PediaSure has a bunch of sugar and other questionable ingredients…we wanted to know just what we were putting into him.
The G.I. team eventually went along with the idea, which required changing out his g-tube to a little larger size. We got a Blendtec blender, which is supposed to be one of the best, and we armed ourselves with some recipes.
His feeds began to look like blends of chicken, spinach, quinoa, and olive oil, for example. It was bright green and weird-smelling, but at least we had control over what went into his body. The biggest challenge is that we can no longer use the feed pump for blends: instead we have to push it through with large syringes…so no more “set it and forget it,” we need to take our time doing it. While we acclimated to the new routine, we still used PediaSure for some feeds, but focused mostly on the blends. The Blendtec worked GREAT, just as advertised. It blends everything completely (and is even featured in some pretty hilarious “Will it Blend?” videos online). Nolan started to put on some weight and it seems like so far, so good.
We know this is a lot more work than the PediaSure, but again we want him to – in some way – experience what it’s like to have the same food we’re eating. It’s a lot of work but we’re hoping it will pay off.
So those heart parents with kids on g-tubes: how many of you have tried a blended diet with them? Is it working well for you? Do you have any good recipes to share?
Hey friends! Don’t worry, I didn’t forget about you! It’s been a busy little while for us, so I wanted to give you a quick update on everything that’s been going on.
First, I got a new job! It was a transfer to the hospital and it’s been a great opportunity to be able to work with our patients. I think my experience with Nolan is going to be a great asset there.
Nolan has been doing REALLY well: his weight has been creeping up ever so slowly (he’s over 19 pounds now) and a lot of the physical therapy that he hates so much has been paying off. In March he finally began crawling! At first he would do a ton of crying and whining whenever he would craw, but then he would crawl a little further and further each day. Then I think it occurred to him that that “annoying” crawling was getting him places. Then he was OFF. The kid is all over the place!
The next step was pulling up and standing to coast along furniture. He actually took to this rather quickly and is a pro:
As long as he’s holding onto something, he’s a walking fool. If you want to see a video of him using his little walker, go to Nolan’s Facebook page. So now that he can coast, the next step is balancing and walking on his own. He’s actually doing well with that too: physical therapy is now working on helping him stand on his own, then holding the back of his shirt, to show him he can stand and walk without anyone holding his hands. So far, so good…I imagine he’ll be walking real soon!
Feeding is going well with him too, especially lately. In a usual week, we’d be lucky to get Nolan to have a couple spoonfuls by mouth…in the whole week. And a lot of it would be through trickery. Lately, though, he’s been much more interested in eating. He’ll sit at dinner and eat 5 or more spoonfuls of food in one sitting. And he’s been doing this practically every day. I know 5 bites of food isn’t a lot, and he still has a long way to go, but compared to 2 bites a week (or sometimes a month), this is a major win. I’m hoping he keeps it up: it would mean he’s closer and closer to getting rid of that G-Tube.
Finally, after like a billion ear infections, Nolan finally had some ear tubes put in. I think it’s made a huge difference: he’s been less fussy, less sick…all is good!
Still a lot of work to do on our little guy: he’s still going to physical therapy 2 times a week and speech therapy 2 times a week and will soon start occupational therapy…but things are paying off, and I think the rest of this year is going to be a great one for him!