Paisley Rae of Light

Paisley Rae is continuing to heal nicely from her VPI surgery, and we are excited to get her new speech therapy goals underway to see the progress this surgery was for!🙏🏻

She wanted to say thank you all for the prayers, and Merry Christmas!💚❤️💚❤️

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

💛Tomorrow is surgery day!💛

We are almost to our hotel for the night, and then we will arrive to Children's Healthcare of Atlanta at noon tomorrow for the ENT doctor to perform a surgery for the back of P’s mouth to help correct her VPI condition. We PRAY for everything to go super smoothly, for her pain to be managed, and for an easy, quick recovery! We are in hopes that this will help resolve some of her speech and oral issues🙏🏻

God be with our girl, Dr Goudy & his surgery staff, Monny & our babies back home, and us as we’ve done this many times before - we know how strong our girl is!

Shout out to her occupational and speech therapists Mrs Michelle & Mrs Lauren for her “all things yellow” goody bag for the hospital stay! We love y’all so much!!

Asking for prayers for my girl!

She ended up in our local ER Saturday afternoon with a gash to her right hand from a piece of glass😩 I will spare the story details and picture, but man did it break our hearts seeing her like that

A big thank you to those who helped us and to the nurses, staff, and ER doctor at our wonderful Washington County Regional Medical Center! Our girl got her stitches, and we were back home shortly after. She was so brave per usual💛 please pray she heals nicely, no infection, and that she can still enjoy our Disney World trip later this week that we have been counting down all year for!

And lastly, thank you so much God for giving us this amazing little girl - she is everything

Paisley Rae had a pretty rough month of May being sick with several different illnesses, and her labs and kidney ultrasound were not great - but we are so happy to say that the month of June has turned a corner with her, and she’s been so much better, praise Jesus!!

Her labs are back to normal and her latest ultrasound and urology checkup were great! Prayer is EVERYTHING, and we are so blessed to have our Lord and Savior forever keeping watch over her🩵 she also celebrated her 4th Kidneyversary with her Daddy’s kidney! She’s officially lived more life dialysis-free and off a machine than on one!🙌🏻🙏🏻🥹

Now back to enjoying summer just the way we like it!!⛱️

*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!!!