Change is on the way. It always is. From something as simple as the changing of the seasons to something more challenging such as a change in lifestyle. Even changing a g tube button. Change is coming!
LE’s g button is not holding water like it should in the balloon. As a result, it’s been pulled out twice. Thankfully, I am capable of putting in back in. Unfortunately for us, we are waiting for the DME (Durable Medical Equipment) company to send us a new button. So until then, I have to be super careful that I don’t pull her button out again. The first time it happened, she cried but got over it relatively quickly. The second time she didn’t even twitch. I have to periodically add water to the balloon that holds it in place.
LE is experimenting with eating more food. We’ve dropped a bottle a day, and we’ll find out soon if she can still gain enough weight this way. She loves food! I’m very thankful for that. I just am not sure yet if her body will take in the nutrients it needs from food. We already had to increase her formula from 20 calories per ounce to 26 calories per ounce, just so she could gain. I am keeping my fingers crossed that she gets what she needs from real food, so we can wean her off the formula.
She has started physical therapy to help catch her up developmentally. She is starting to crawl on all fours, as opposed to dragging herself along. She’s even pulling to a stand now! We have to work on her stiff legs, though. She likes to rely on her joints to keep her up, and is not a big fan of bending her legs. She’s very stubborn.
The other kiddos are doing well. LK is on a strict Nexium regiment, due to her acid reflux. If she misses a night (like when she falls asleep early) we certainly know about it! She’s up all night screaming. One of the advantages of LE’s g tube is we can giver her the medications even if she’s asleep. Such is not the case with LK! But she’s getting older, and I imagine it won’t be long before she asks us for her medicine before bed.
Change is inevitable. Change is coming. We will deal with it as best we can. At least we can see it coming right now!