Paisley Rae of Light

Our girl with her “whiskers”🐱🥲

There are two tubes in her nose that are holding it open while she heals some more, and they will take them out tomorrow - this seems to be bothering her more than her actual throat😩 BUT she had a decent night with some rest on and off, and she’s been eating some soft foods this morning and taking sips of liquids! So, progress🙌🏻🙏🏻

Thank you for all of the constant love and prayers for our princess P!! Plans are still to be discharged tomorrow, so hoping she has a great day of continued progress and a night of rest🩵

UPDATE: spoke with the doctor & she did well!!🙌🏻🙏🏻 he said main thing will be pain management these next few days and getting her to eat & drink what she can! Thank y’all so much for the prayers for our girl!!!

They finally took our baby back at 3:00pm with surgery expected to last 1.5 hours - poor thing was hungry & tired, but she’s SO strong! We know it’s all in Jesus’ mighty hands! Thank you for all of your prayers, and keep them coming!!

Photos included from before💚💙 the prettiest, nicest hospital there ever was

*UPDATE:
She took the nighttime med like a complete champ and even said it tasted better than her icky immunosuppressant med she’s taken for 3 years now🤣😝 after she got done, I was hugging her and telling her how proud I am and how this would be her first night ever tubeless, she said “I’m free like Ella (little sister)!”🥹🥹🥹🥹🥹🥹*

Asking for prayers for our Pumpkin P!💜

When she was changing clothes after school today I happened to walk in her room and saw that her G tube was GONE out of her tummy🫣 there’s no telling where she lost it while at school or how long it had been out. I tried to use our backup tube, but the hole had already closed up enough to where I couldn’t fully get it in.

After speaking to Paisley’s kidney doctor, she agreed that we can leave the tube out since all P uses her tube for is her liquid nighttime prophylactic antibiotic that she can do by mouth until she can tolerate the pill form - which we’re hoping is coming soon! We definitely know she’s capable!

It’s also been over 4 years since they placed her G tube, so another surgery was on the horizon anyways to replace it since she’s gotten so much bigger since then - so if a surgery is imminent to put in a new one, that’s no biggie since it was gonna happen anyways!

So with all of this said, we ask for your prayers that P can tolerate her nighttime med by mouth, that she doesn’t get a sickness that will put her in the hospital needing IV fluids, and that her G tube “hole” closes up and heals nicely🙏🏻 we knew this day would be coming where we’d start training her to take her meds as pills instead of liquids, so we’re hopeful this is another step in God’s plan to get that going! This girl of ours is such a rockstar!!

And lastly, I’ll add the major milestone for her - right now is the first time in her 7.5 years that she has NO tubes coming out of her body🥹😭🙌🏻 thank you, Jesus!!!