Happy May! We are so excited for the nice weather over the last few weeks. Olivia has gone out on walks with lots of family members, and Anya of course!
Olivia touched grass for the first time, and didn’t seem to mind how brown the grass was…
https://photos.app.goo.gl/pQzhzuck9ggfijJi9
Olivia had a follow-up hearing exam and we learned she’s doing so well, we won’t need to return for another whole year. She has had a few pulmonary follow ups, and Olivia is now only on the vent every other night. We hope we can transition towards not using the vent at all over the next few months.
We received a new piece of equipment last week as well, an Airvo, which we are using in place of her trach mist while Olivia is asleep. We were hoping it would lead to less secretions, and less vomiting, but no luck with that so far.
We are testing feeding Olivia through her G-tube (directly into her stomach), instead of through her J-tube (through her jejunum). She’s receiving two ounces of food a day, the equivalent of four tablespoons, and her stomach has to relearn how to handle food directly. She hasn’t been fed through her stomach since November. We hope she is able to handle it, and we can transition more of her daily formula to be fed into her stomach.
The eventual goal is to stop using the J-tube, trade out the GJ-tube for a G-tube, and feed a few bolus feeds a day rather than 16 hours of continuous feeding.
https://photos.app.goo.gl/9DcQH19FffzVrzNC7
There hasn’t been any progress on feeding therapy, but that doesn’t stop us from trying daily. She’s made improvement over the last 8 months, and we know the improvement will continue.
