Day 32

Quick update:
Opthamologist did not see enlarged ventricles so the extra fluid on her brain is ok for now. Praise!

Her speech is slowly getting better and expanding so it does seem like it was probably the antibiotic toxicity. Praise!

We have been pain Med free for 48 hours. Praise!

Both things we tried for the Monti and the ostomy overnight drainage worked! Way to go macgyvering! Praise!

Genetics showed up this evening. He did a physical exam and is going to do bloodwork. We won’t have any answers from them for a few weeks but I’m thankful that got started. Praise!

Now for the prayers…
We had to skip two feedings today. That was unexpected. So we are doing a slow overnight feed through the pump and I have a plan for tomorrow for more spaced out feedings and a smaller amount. This should work IF the night feed works. And honestly Jack and I can tweak and figure this out on our own I think. They just say ok when I come up with a plan so I can try my plans at home and be done here. We’ve played this balance her feedings game many times over the years. We’ll go slower and slower until we find what works and that could take a very long time. We can go home and do that…. In my mind, we’ll see if they go along.

That’s sums up the day for the most part. Oh and you know, some Doc McStuffins, some fake coffee shop playing, we went for a walk around the unit, I worked on our April budget and she flirted with her boy nurse all day… Busy busy.

She had “iced coffee” and I had hot :)

Psalm 139:7-12 Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there;if I make my bed in the depths, you are there. If I rise on the wings of the dawn,if I settle on the far side of the sea, even there your hand will guide me,your right hand will hold me fast. If I say, “Surely the darkness will hide meand the light become night around me,” even the darkness will not be dark to you;the night will shine like the day,for darkness is as light to you.