Shirleyann Squad: A transplant journey

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Shirleyann Squad: A transplant journey Shirleyann is a heart transplant recipient and is waiting for her second transplant! This page is to spread awareness and inspiration!

Man, it has been so long since I posted! Our life has been soooooo uneventful! Lol Shirleyann is enjoying summer break b...
25/07/2025

Man, it has been so long since I posted! Our life has been soooooo uneventful! Lol Shirleyann is enjoying summer break before high school starts and we are working and just simply living life!

We had our first clinic appointment today since her annual biopsy back in April! It’s weird not seeing the doctors and nurses more than every 3 months! And just like our life at the moment, the appointment was uneventful except for lots of people making it a point to come in to see us since they haven’t seen us in so long! Including the director of the heart transplant program, Dr. Law! Shirleyann’s social battery was drained by the end of it, but she really loved it!

The two things we are most excited about right now is that she has gained 5lbs and a couple inches in height over the last couple of months and her hair is growing back thick and curly!!! She decided about a month ago that she didn’t want to do her feeds through her gtube anymore and I told her it was fine as long as she was gaining weight. Most of the 5 lbs she gained was in this last month without the feeds! We are going to see how she does through the next cold and flu season and if she can maintain fluids while she is sick, we are going to take out the gtube!!! I recently cut the dead stringy heart failure hair off which allowed her curls to come out full force! She is definitely my kid, for sure!

I can’t even believe we are where we are now compared to where we were a year ago, but also, it’s hard to believe she was ever sick! She is an absolute miracle and I am so incredibly lucky to be her mom! ❤️ life is so good!

You guys…..I can’t even. This girl took a huge step toward a massive goal she has had for years today! She dreamed about...
13/05/2025

You guys…..I can’t even. This girl took a huge step toward a massive goal she has had for years today! She dreamed about the day she could try out for a play! She put on her own plays for us in the hospital or at home and today, she auditioned for Little Women!

She was so scared and she cried for 45 minutes begging to go home and I told her that I was not willing to go home and let her fear win today! And she got up and did it, like the boss she is and it was amazing! I cried tears of joy watching her audition! A year ago, we had no idea what life would look like! Words cannot even describe the emotion and the pride I feel at this exact moment!

No more surviving, guys! This girl is THRIVING!

Update: she is out! Everything looks good! We will know in the next couple of days about the biopsy! All pressures in he...
07/04/2025

Update: she is out! Everything looks good! We will know in the next couple of days about the biopsy! All pressures in her heart are great though! We are headed home soon!

Well it’s annual biopsy day! Wish her luck!

15/02/2025

After 5 hours in the ER, we are home! It was a challenging day and sometimes I have to remind myself to just breathe, but we made it through. I forget, I guess, that it’s been a long time since Shirleyann has been in our local ER, so not everyone knows her there still.

Anyway, she has pneumonia, so she is on antibiotics for 5 days, so we are resting and watching movies all weekend!

14/02/2025

Well, we are in the local emergency room. The doctor ordered viral swabs and a CBC to be done this morning, but all swabs came back negative and her white blood count is really high so we were told by her primary care provider to go to the ER immediately, so here we are. Please keep Shirleyann in your thoughts today!

14/02/2025

It didn’t take long for Shirleyann to get the crud! Poor girl took her down fast today! We will be going tomorrow to get swabs and all the tests so we can start Tamiflu if it’s the flu! Please keep her in your thoughts!

Shirleyanns first month of school has been awesome! It has been an easy transition for the most part when all of us thou...
07/02/2025

Shirleyanns first month of school has been awesome! It has been an easy transition for the most part when all of us thought it was going to be so hard! She is loving it!

07/01/2025

Apparently Shirleyann had an awesome day! She did get lost once, but found her way back with some help! So many of her old classmates greeted her with open arms and they were so excited to see her!

It finally feels like we can close that chapter of our life and move on and I am so excited for her future!

Holy heck! It’s shirleyanns first day of in person school in 5 years! She has been waiting for this day for forever and ...
06/01/2025

Holy heck! It’s shirleyanns first day of in person school in 5 years! She has been waiting for this day for forever and she was so stoked! Cannot wait to hear how her day went tonight!

We had clinic today! It was a good day! She has gained 7lbs and grown 2 inches since the beginning of October! She is do...
10/12/2024

We had clinic today! It was a good day! She has gained 7lbs and grown 2 inches since the beginning of October! She is doing so well and has so much more energy, less pain, and more smiles for sure! She is finally starting to see the difference between the before and the after. She never knew what it was like to feel “normal” and now she knows!

One of the biggest points of today’s visit was that we got to see her old heart! Both in person and pictures. I won’t show them here, but it was intense. She was so very sick and i always knew that, but we saw the “true” reality and that is scary! So glad we are not back there again! On to bigger and better things, including SCHOOL! This was a topic of conversation today and the doctor said that she is going to discuss her going back to school around the first part of January AND shirleyann has expressed some interest in Track and Field and they gave the approval for her to start to practice and do track this year! Woot woot! We have ALOT of work today in that department, but we can finally start!

It was a good day!

25/10/2024

Oh man, I guess I haven’t posted in a while! Life has been busy!

Shirleyann continues to do awesome! We had an appointment at the beginning of this month where she was completely taken off of diuretics for the first time in her entire life! The negative side is that she had lost way too much weight…..for the first time ever, the doctors said “don’t worry about anything other than getting her to eat”. So before transplant, it was “don’t worry about food, we will just increase feeds to keep her nourished.” Now its, EAT GIRL EAT! And boy is she eating! Not as much as a normal kid her age, but she is working her way up to that and she has gained almost all the weight she has lost back in true weight, not water weight!

She is just a superstar…..as you can see in the video posted below!

08/08/2024

We had our first biopsy since transplant today! I am sure Dr. Rubio could not wait to come to the consult room to let us know that her pressures look great and how perfect this heart was for Shirleyann! He said “nothing to report!” I am so grateful!

As if I couldn’t feel more grateful, we also got a letter from the donor family today❤️ it’s definitely different to put a face and name to our hero, but I am so glad I can now! We will absolutely be writing a letter back! It’s been an emotional day for sure, but so excited to go see my girl when she wakes up and take her home!

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