Night 11 and counting

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Tonight is night #11 in the hospital. I left for about 30 minutes today to pick up lunch. It’s the only time I have left. We are finally making some progress, but it doesn’t make any sense and it is a little frustrating. Feeding Lyra through her J-tube was a giant disaster, to say the least.  She just couldn’t tolerate it, and actually did worse than she did being fed into her stomach. It’s not logical, but it is what happened. So, now she is back to being fed via a G tube.  She is making very slow progress, but it is progress.  At this rate we will be out of here in 3 days. The problem is, we are back where we were a month ago. She is still fed via a G-tube, and we feel like it is a matter a time before we end up in another cycle where she stops tolerating her feeds. The doctors here are amazing and have tried everything they can think of. We even did a brain MRI to make sure she did have pressure causing nausea (a realistic risk with her). So far, we have no answers. The best we can do is hope that this lasts long enough for her to grow. As soon as she turns one I am hoping to move her to a blended diet. Some parents, with kids like Lyra, have said that their children do much better on a blended diet. Luckily it sounds like the people at this hospital are big fans of it. So, here’s to hoping.

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