Sleeping Beauty

She’s out for the night and now I can get my thoughts together from a long day.

I was able to attend my grandmother’s funeral this morning. I was glad to celebrate grandma and since I’m inappropriate in serious situations I got to laugh a lot… :) Here are a few fun pictures of us with her.

After the lunch we took care of the chickens and goats for another few days and packed up the car and headed back down to Indy. I think our cars go on autopilot now (not like they didn’t already before.)

I just want to give another praise for my big kids. They have gone back and forth so many times and spent HOURS in that waiting room and they just stay positive and make the best of it. I even heard them telling someone today that they are having fun and that they should come hang out in the waiting room too! So funny! I just know that must be God lifting them up and giving them His special perspective on a yucky situation. No beaches or Disney or water parks for them for spring break… Hospital waiting rooms will be just fine. I’m amazed by them.

The day started off ok for Laila. The doctors wanted to push ahead to 120ml for her feedings today which would have doubled from yesterday. We did it for the first one but cut it back to 90 for the other three. We just didn’t feel comfortable with 120. I for sure want her at full feedings and coming home but if we push her too far too fast we will have to start all over again and who knows how long that would keep us here. Going slower might add a few more days than if we pushed and pushed and it actually worked but I’d rather play it safe and make sure we get to come home maybe in the next week. And it turns out she almost vomited her last feeding tonight so I think it was a wise decision.

Charlie Brown (her ostomy) seems to be holding his own and having good output. Although it is still basically all liquid. Her bag leaked AGAIN today and we just changed it yesterday so it didn’t even last 24hrs this time. Just not sure what to do about that and the ostomy nurse isn’t much help. The Monti (bladder port) is just way to close so there’s no room for adhesive to stick. I also have no idea (and neither do they) what we will do overnight when we get home. It has to be emptied every two hours while she is sleeping right now or it gets too full. So when I get home and have no overnight nurses…. I guess I’m back to newborn phase of getting up every few hours a night…. Yay. They said they may be able to get some extender thing but again, it’s an insurance coverage issue.

A new concern is her cognition. For the last few days we cannot understand anything she is saying to us. She has never fully gotten her voice back but she would kind of be whispery and we could finally understand but now she is talking more but not real words. And she’s very tired again. I may have them bring in her neurologist Monday just to check her out. Her speech is my favorite thing about her. She’s witty and sassy and full of life. I need to make sure we get that Laila back. That has been a concern on my heart since the beginning of this.

So that’s pretty much it for today’s chapter of the Laila Chronicles. Stay tuned next time for more poop and pee talk and maybe even a little ostomy fart!

Happy good Friday!!

Isaiah 53:5 He was wounded because of our rebellious deeds,crushed because of our sins;he endured punishment that made us well;because of his wounds we have been healed.

Yep, I just put a scripture next to a poop comic. That’s how I roll.