WrenLee The Warrior

05/23/2025

Finally got the call shirts are done!!!! I will be pickin them up today at some point!!! Thank you for supporting WrenLee and the CF Awareness
!!

05/22/2025

Tonight at graduation, I cried quietly as I recorded WrenLee sing her heart out, and as I recorded her walk across the stage.
I held it together in front of all the people; but it was hard. Knowing that I might not be able to recreate these photos for her 6th grade graduation, her high school graduation, or her college graduation.

My heart broke a little tonight knowing that we maybe having a good week this week, but I already know next week will be rough. Knowing that her little appetite burst is only for a couple days then it’s back to a fight for her to eat and gain weight.

They tried a new thing this year; asking the students what they wanna be when they grow up.
WrenLee wants to be a “Nurse like mommy”.

My heart broke knowing that such a happy, smart, STRONG, little girl may never get to be the nurse she wants to be when she grows up. Knowing that I may not be able to witness it all and push her to be the best nurse in the world. KNOWING, that the end could happen at any point. Hoping we find a cure or a solution to keep her with me just a little bit longer. Im glad today was a good day for her.

Praying for some answered questions next week at our Cinci trip.

05/09/2025

We’ve had a rough week between new medicine, new routine, having some slight behavioral issues and some kidney issues this week that is also triggering some vertigo issues. But unfortunately it’s part of the lovely thing we call life.
It’s such a joy to spend everyday to be with you and love you 💕 Momma and sissy love you so much 🫶

05/06/2025

Day number 5 of month!
***Most people think that because someone with CF means they can’t run around and be physically active—— WRONG! Most doctors try to promote the activies, the exercise, the movement helps loosen up the mucus!
***when you have CF, most the time, if you get on a solid treatment plan, you can live life as normal as possible.
***there is NO CURE yet for this genetic disease- there is treatments that helps prolong life, but that does not mean it is a cure.
***both parents have to be a carrier of the CF gene for a child to have CF. You can not just pick it up from the street.
💜💜💜

05/04/2025

I’m late- I’ve been sick since we came back from Cincinnati on Monday.

Some facts a lot of people do not know or understand about CF.
*over 40,000 people in the United States have CF; 1/3 of them are undiagnosed and potentially untreated.
*Although there is a screening for CF when babies are born, the sweat test is not always accurate, so it is always smart to get another test around the age of 3.
* Most people with CF have to take enzymes for their liver and pancreas- but if their liver levels are too high it can cause them damage their liver and potentially develop cirrhosis, liver failure or liver cancer.
*not every level of CF is the same. There is 3 categories- technically 2. There is a line that separates the extreme CF, and intermediate. And then there is the category that is technically asthmatic
* you can not go out in public and point someone out of having CF. They are just like everyone else!!!
* 1/3 children that are diagnosed with CF within a family; it is very uncommon for all siblings to have CF- they can be carriers, but very few the same issues.
*many times if there is more than one inconclusive test- typically it means there is more behind it- ALWAYS TRUST YOUR GUT!!

💜💜💜💜💜

04/29/2025

2 DAYS left to get your orders in!!! Hoodie, Crew Neck, T-Shirt, or Long Sleeve shirts available!!! Send us your orders!!!!
Support WrenLee and the other CFers this May!!!

04/28/2025

Now that we are home, and she is resting now.
Here is an update of today.

We met our new Kidney Specialist at Cinici for a meet and greet- we will have our appointment the same day we go for GI in the end of May! Dr. Aungaonna seems to be a good fit 🤞🏽(i definitely can not spell that right)
CF clinic wants to do another procedure- and hopefully she can handle this one better than the last- due to insurance - it takes a month to get it approved - so definitely by mid summer-
New medicines to be started this week- and possibly some antibiotics- AGAIN-
Waitin on some lab work to come back- unfortunately WrenLee is still not gaining weight like they hoped. She is definitely struggling in that area.
Fluid is building up in her lungs again, so hopefully insurance kicks it in high gear to get her approval for the procedure.

I wish my little baby could have some comfort- not have to worry about when she needs to take medicine or in pain/discomfort. I don’t wish this life on anyone. Not even my worst enemy. Seeing my baby in pain and we can’t do anything about it- kills me.

04/26/2025

04/26/2025

You have until Wednesday to get your WrenLee the Warrior shirts paid for and ordered!!!!

04/19/2025

1.5 weeks left to get your orders in!!! Hoodie, Crew Neck, T-Shirt, or Long Sleeve shirts available!!! Send us your orders!!!!
Support WrenLee and the other CFers this May!!!

04/07/2025

We will be at WCWO and AACW this weekend! Get your shirt or sweatshirt while you can!!!