Day: October 12, 2018
Snow Flakes and Super Heroes 😌
Yes those are big snowflakes falling from the sky 😁
Our girl finally ate something today!
She still doesn’t have much of an appetite but the wonderful nutrition staff convinced her to order lunch and she ate a chicken strip and had a few drinks of some apple juice.
It’s not much but it’s a start and we’ll take it 🙂
She had some special visitors earlier that made her morning. Captain America and Spider Man came to see how she was doing and chatted with her for a bit.
They even gave her some comic books to take home to Aiden and Nicholas. She thought it was great they showed up to cheer all the kiddos up. We have lots of little ones on the floor today, it was great seeing them smile.
The craziest thing for us is watching it snow here in Illinois in October! It’s been coming down all afternoon and just last week we were in the 90s sweating while we put our Halloween decorations up.
Although me and Ceci aren’t ready for the snow we sure do enjoy watching it come down. It looks so pretty and calm outside. It’s a nice change and some different scenery to look at.
Doctor Reid came up just a bit ago from Surgery to check on our girl and tried to access ceci’s urinary stoma. Unfortunately it didn’t go the way we hoped. When she tried to access it, ceci’s abdomen started bleeding immediately and she was unable to pass it. So she decided she wanted to try again with a much smaller tube.
It was painful for sis but doctor was finally able to pass it and get her pathway back open. She’s instructed us that she wants it left in for now to keep the pathway open and tomorrow we’ll reevaluate. She’ll get another heavy dose of antibiotics this afternoon and another later tonight again while running around the clock iv fluids.
We were hoping to be able to get our girl back home tomorrow but we’ll gladly stay another few days if it means we’ll finally rid her body of these infections.
Child life has been bringing her some activities to help keep her mind off everything and keep her busy. She’s done sand art, painted on little mini size canvases and now she’s coloring and watching Matty B videos on youtube.
Dad and the boys are suppose to be coming up to see us after he gets off work today. Ceci’s really looking forward to a visit from her boys, so we’re hoping the weather will ease up a bit for their drive.
We hope everyone’s doing wonderful today.
Enjoy the rest of your day and we’ll be back later with another update.
Lots of love and hugs,
Alexis (mom), Ceci Marie & family
~ Spina Bifida Fighters and survivor~
Feeling better Friday 😁
Good morning everyone and thanks for coming back by to check on sis.
Things are finally looking better for our girl 🙂
She slept like a rock last night. LOL, she even snored and woke me up. Hehehe this girl doesn’t snore, so she had some catching up to do.
Her abdomen xrays looked good. Her cecostomy procedure that we do every other day is doing its job and emptying out her bowels.
Her blood work showed that she’s still iron deficient but she’s at a level that we can just watch for now. She doesn’t need a transfusion, which is wonderful news.
She’s still getting around the clock iv fluids and antibiotics which is bringing back her color and she said she’s feeling better. Her dizziness has gone away and her urine is clearing up 🙂
Doctor said she was dehydrated and that caused alot of her symptoms.
Her stoma is looking less angry too. The redness is gone and the swelling is going down. The plan today is to have ceci try to catherize through it, like she would normally and see if the internal swelling is easing up.
We need to make sure the bleeding has subsided with this treatment too. Normally with infection she’ll have a little bit of bleeding from her stoma but this time around the bleeding has been out of control. With her already being anemic this has been a big concern.
Fingers crossed tightly for our girl that it’ll be better this afternoon. I’m thinking if we get good results with access, I’ll be able to take sis home tomorrow.
I know she’s ready to get back to our boys and back in her own bed. She heals so much quicker when she’s at home like so many of us.
We want to say thank you to you all for the prayers and for keeping ceci and our family in your thoughts.
The past few months have been very exhausting for us all. It’s hard on all of us seeing sis sick for so long and we’ve had so much bad luck going on.
So knowing you all have our backs means so much 💜
I’m going to sign off for now, but I’ll be back soon with another post.
I need to convince our girl to get some food into her system and I promised her I’d run down to the activity room and grab a game for us to play.
Be back soon.
Lots of love and hugs,
Alexis (mom) and Ceci Marie
~Spina Bifida Fighters and Survivor~
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