Benjamin's Grand Adventure

13/11/2024

Just a few hours shy of one week post op (from tonsil/adenoid removal) and that quiet, subdued, calm recovery period everyone promised me is a myth 😂 Our boy has had an incredible recovery so far, and apparently chose surgery as the confidence boost he needed to finally walk on his own. Literally everywhere. He’s a rockstar - and if you know him, you know he’s ALWAYS only ever done things his own way. No idea where that trait comes from…🤪

Per usual, thank you so much to all of you who reached out and/or have been praying for him. ❤️ He’ll have a few follow up appointments in December and hopefully nothing exciting to update his fan club on through the holidays!

06/11/2024

11/7: we are home! ❤️

Update 11/6! Brother Man came through surgery beautifully. He’s awake and alert, and has already eaten some applesauce and gotten some toys delivered from Child Life. He’s also already climbed into his stroller once and gotten mad at me for not leaving with him 😂 And has already requested Uptown Funk. (pretty sure he’s about to cause another apple sauce shortage here at Hotel Shands 🤪)

Thank you so much to everyone who is still so invested in him (and us).

03/11/2024

Update (11/5): Today’s oncology appointment was the definition of a social visit (meaning the doctor told us there’s no need for concern from his perspective at this point) ❤️ We’re settled into our hotel, and waiting for the complementary dinner to start 😂

It’s been a minute since I’ve posted anything of significance on this page, mainly because I actively avoided it after my mama passed away. She was the primary driver behind and until recently it just hurt too much to look at this page.

But I’m back, with an update and a prayer request for our big little boy. Most importantly, his heart remains healthy and strong and I’ll never not be thankful for that. He’s in a 3 year old preschool class and is thriving. Meeting all the goals and milestones and overall just crushing it.

This week, however, we’re going on another trek to Shands for a few appointments. The first is Tuesday, where he has a hematology/oncology consult. Before you panic and assume the worst (looking at myself here), there was one funky lab result over the summer that prompted a full body CT in June. Everything was clear on it, and this appointment is the “next step” to officially clear him of anything scary in that respect. So please pray that there is absolutely zero news from this appointment (Tuesday afternoon). Transplant kids are at a higher risk of developing cancer as a “complication” of transplant, but hopefully we avoid that party completely.

On Wednesday, Mr. Man will be having surgery to remove his tonsils/adenoids. It’s usually an outpatient procedure, but we’re not taking any chances. His will be done at Shands and then he’ll be admitted for hopefully only 24 hours for monitoring. Please pray that everything goes smoothly and with no complications. I am already looking forward to posting to tell you we’re on the way home ❤️

{Also, just want to brag on my dad (Pops) who will be holding down the fort with our wild child 6 year old while we’re gone.}

01/06/2024

146 days. That’s how long ago January 7, 2024 was. In some ways it feels like 30 seconds and in others it feels like 85 years.

Before I go any further, let me assure you that Benjo is in great health and I don’t want to worry anyone on that front. I’ve been putting this post off for 146 days bc it just makes things so much more real. Because on January 7, 2024 we said a temporary goodbye to my wonderful, beautiful, fiercely devoted Mama. She was the entire reason this page was created, other than Benjamin of course. She was with me the day, 3 years ago today, my world shattered when the doctor at Shands told me “Your baby probably needs a heart transplant”. She was with me the day the transplant team came to tell me they’d found a match for my baby. And she was with me for so much in between, often times when I was annoyed at her for insisting on crashing our appointments 🤣

The day we were told Benjo’s diagnosis, my mom and I left the hospital and went to lunch at Five Guys. Because my mom insisted we eat, even though I was not hungry.

While we were both fighting back tears, she quoted Isaiah 40:31 to me - “but they who wait for the LORD shall renew their strength;�they shall mount up with wings like eagles;�they shall run and not be weary;�they shall walk and not faint.”

Throughout my son’s transplant journey, I often got annoyed at my mom’s insistence of bringing God into everything. But let’s be real. She had faith to move mountains, and she was even then preparing me for something even more devastating than my son’s diagnosis. I don’t know how to be a mom without my mom, but I also carry her with me everywhere and can’t wait to see her again.

17/02/2024

Hey, friends!

The 2nd anniversary of Benjamin’s transplant is less than a month away (can you even believe it?!) so this year we’re doing a t shirt fundraiser for care packages for families in the PCICU at Shands. Here’s the link for the fundraiser! It’ll run for about 2 weeks, and I’ll use all the proceeds from it for care package items!

Benjamin is doing really well, and got a mostly glowing report at his checkups last week. “Mostly” = because he was incredibly grumpy and uncooperative for the majority of the visit. He moved up to the 2 year old classroom at his school, and is loving it. He’s thriving, and it’s in large part due to his precious donor and their family. And to the love and support of all of his family and friends. Thanks for reading, loving, and buying a shirt or 6 😉

Last year we were able to provide 10 care packages, and I’d love to get there again this year! I’ve started the campaign with just a few selections, but if you want a specific color or style, message me and I’ll see what I can figure out!

Raising money for care packages for current PCICU families. The 2nd anniversary of Benjamin's heart transplant is less than a month away, and he is thriving! In honor...

29/12/2023

Benjamin’s 3rd Christmas has been my favorite of his 3 Christmases, even though he hasn’t wanted to sleep most of the nights of this break 😵‍💫 After a quiet Christmas morning at our house, we spent the majority of the week in Jacksonville with my family, and that has been delightfully chaotic ❤️

Benjamin is doing great. He and sis love their preschool, and mama loves that all of his therapists can see him in his classroom! He’s still getting weekly physical, occupational, and speech therapies. He unfortunately protests his PT the most, bc that’s where he has to work the hardest.

He’s progressed to having checkups at Shands every 3 months, which feels like 7 years after going there every month for over a year! His next field trip there isn’t until February!

We concluded our time in Jax with a follow up neurology appointment at Nemours. Benjamin has been off of all seizure meds since June (!!!) and today’s visit was an easy checkup. As we were discussing Benjamin’s development, the neurologist reminded us that the area of the brain where Benjo’s two pre-transplant strokes occurred are responsible for speech/language skills. The neurologist also reassured us that Benjamin has until age 7 before he needs to be “caught up” before considering a more permanent diagnosis (rather than the current one of developmentally delayed). He also thinks that Benjamin’s reluctance to walk on his own is fear based rather than neurological. So the plan going forward is to remain aggressive with all of his therapies and go back in one year! It can often be discouraging to constantly be talking and thinking about how delayed he is, and I’m often tired of feeling like I have the kid that everyone feels bad for, but today’s visit was encouraging in that we likely aren’t dealing with any underlying or ongoing neurological issues. We just have a stubborn, opinionated, gigantic koala baby who needs to be convinced that these progressions are worth his time.

23/11/2023

Happy Thanksgiving to all of our family and friends who have been with us on this truly grand adventure! We are thankful for every individual who has been praying for and loving us from the very beginning, as well as for the precious donor family who saved our boy’s life on what I imagine was one of their darkest days. ❤️

So register as an organ donor, and enjoy your Turkey Day!

Faith over fear, always.

30/09/2023

Mr. Man has had a rough few weeks. {Caveat. His ❤️ is perfect. Kids are just gross, and immunosuppressed kiddos have a hard time kicking common bugs sometimes.}

He had 2 different viruses AND a bacterial infection within the course of a few weeks. And landed in two hospitals within three weeks. Because GI issues make his anti rejection medicine go crazy in his body, and then those high levels cause GI symptoms and it’s a gross cycle.

We were getting worried bc he hadn’t been this sick post-transplant before, and my mind immediately went to the big, scary stuff that haunts transplant parents. But the transplant team and the Shands ER doctors quickly ruled out the scary things, and after being admitted, they identified the particular virus and infection as common kid things that one doctor described as “the ugly less popular cousin” of the virus he had a few weeks ago. Idk what he meant by that but it made me laugh. Anyway.

He spent 4 days at Shands, and caused an applesauce shortage on the Peds floor 😂 Matthew and Marjorie stayed home so that Marjorie wouldn’t miss school and could keep her routine. She’s so in tune with her brother, and after we told her that his heart wasn’t sick and only his tummy was sick, she was ok with us being gone. Although they had silly FaceTime phone calls after school every day.

But during those days, as he got iv fluids for dehydration and antibiotics for the infection, I was struck once again by how loved this little boy (and our family) is by so many.

1. The child life specialist from the PCICU brought me coffee, and then sent an intern to kick me out of his room for a few minutes.

2. My parents were at their lake house, so came to visit us twice and give me a break from the room.

3. Another sweet friend who often hugged me and prayed with me in the PCICU came to visit.

4. One of his first girlfriends (a nurse in the PCICU) brought me coffee and snacks ON HER DAY OFF. Then about made me cry when she told me how, during his first Christmas season, she was feeding him a bottle and they were enjoying his over the top Christmas decorations in his room. He’d already had his two strokes, but she said she was just overwhelmed by love for this tiny human and also by an incredible feeling that he just HAD to/would be ok. So as she’s telling me this and we’re sharing a sweet moment, he’s sitting up in the hospital bed and just looking at her like 👀👀👀. It was fabulous.

5. We saw his Shands Mama (his transplant coordinator and my primary contact at the hospital) a few times. Even when he wasn’t feeling good, he still waved to her, albeit kind of snarkily😂

6. My incredible coworkers checked on me and also covered for me. Again.

7. Our church family prayed immediately. I don’t know why we’re on this road, but it has convinced me that prayer works. When I reached out to our church friends for prayer on Sunday, I was feeling pretty anxious about the possibility of what the doctors would tell us. But as I drove to Gainesville, I was overwhelmed by a feeling of peace that really didn’t make sense. But the anxiety just kind of dissipated. Found out later that a dear friend had been praying for tangible peace during that exact time I was driving.

He came home Wednesday afternoon, and has made a full recovery. If you’ve read this far, please keep praying for our boy and also. Wash your hands. Because I don’t want round 3 of a hospital visit in a few weeks…

06/09/2023

9/8: Everyone had a great night at home! Brother wasn’t pleased to go back to the hospital for a lab check this morning, but his med level and overall demeanor are improving. Big sis is having all the feels today, which makes so much sense. Sweet girl loves her brother so so much.

9/7/23 update: Lil’ Boo is home ❤️ Still not completely off of the transplant team’s naughty list - probation, maybe? So thankful for the effort of both TMH and Shands to keep him close to home, get him healthy, etc. Although i think it was the threat of being transferred over to Shands, and the FaceTime call from his Ms. Emily (transplant coordinator) when he was super duper sad last night that got him get his act together. Thank you to everyone who prayed and messaged and reached out. God heard and answered, and now Mama’s going to read a book and hide from my family. 😂

Y’all. This child and I seem to be locked in a competition to see who can gain the most medical attention, and the winner of this round goes to the himself. His ❤️ is perfect. But remember that stomach bug we all got last week? Well. His stuck around and he threw up every day for a solid week. I took him to the ER closest to us yesterday, and they tested everything and all the results were “unremarkable”. Which is fabulous news. But they admitted him to the main hospital for monitoring bc he was so dehydrated. He got two rounds of fluids yesterday in the ER, so by the time we took the “sparkly bus” (what sis calls ambulances) to the main hospital he looked better than he has in days. We’re currently still in the hospital, and he’s throwing shade at everyone that comes in and then crying when they leave. (Including TMH Animal Therapy Dogtor Molly ❤️)

Also. The virus from last week caused a big spike in his primary antirejection medication, which is scary but also common with GI bugs. Fortunately we caught it before any irreparable harm appears to have been done, and all of the fluids he’s gotten are hopefully washing everything out of his system as I type this. Being a is such a double edged experience, bc the med that works so well to keep him healthy can also make him super sick quickly.

Hoping he gets out of here today! Sharing an adult sized hospital bed with this giant tiny human is kind of how I imagine wrestling a small but chunky alligator would be.

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15/08/2023

It’s a big week for our big little boy! Fluffy started PRESCHOOL! He and sis are at the same school, and so far love it. I’m having withdrawals, but that’s fine 😂 We opted to have sis do VPK again, since her birthday is so close to the age cutoff for kindergarten. Already she seems more confident, and came home yesterday telling me all about how there are SEVEN DAYS. (Any scary movie fans will know that I immediately thought of “The Ring” but she meant days of the week 🤣)

The school is inclusive for kiddos with special needs, and even has designated therapy rooms on site. So all of our fabulous therapists have agreed to keep seeing him at school! (And I literally just learned that he’s also going to be receiving music therapy with his class each week!) And they provide breakfast and lunch for the kids. Sis has already informed me that the lunch her school gave her yesterday was better than the school lunches I sent with her last year. Thanks, kid.

Brother Man had a cardiac checkup last week, and everything still looks so good. He wasn’t a fan of being held down for his echo/EKG but we all survived. After the checkup, we visited his old unit. We only made it a few feet through the door, bc he’s apparently pretty popular. 😍 But it was so incredible to see some of the superheroes who saved his life again. Some of whom we hadn’t seen since he was discharged after his transplant. If I had a dollar for every time someone in that PCICU said “HE’S SO BIG!!” I would absolutely be rich! 🤣

A few of the highlights of our reunions:
While Benjo was waiting for his transplant, he flat out refused to look at the nurse manager. Like ever. He would only sneak little judgy side eye glances at him. Apparently that trend has continued, bc last week he made him work really hard to even look at him. We ended the visit with a high five, but it took awhile 🤣🫣

While we were talking to some of his nurses, the unit’s medical director joined us and Benjo was SO EXCITED to see him. He leaned out of my arms and went to him like he’d been waiting ages! They chummed it up for a long time and I forgot to even think about a picture.

Being on this side of things is so surreal. But he keeps beating all the odds and flirting with all the ladies. And his baby mullet game is stronger than ever.

03/07/2023

🎉 BIG NEWS from Benjo land!

Last week, he had an EEG as a follow up to the strokes/subclinical seizures he had pre-transplant. Today we met with the neurologist and learned the EEG is N-O-R-M-A-L and he is cleared to quit his remaining seizure medication immediately. 🎉

Today I’m imagining myself on the day of his first stroke, and how scared I was that I’d lose him. There was no way he was coming back from that. If I could go back and tell myself anything during that time, it would only be “Look. At. God.”

30/04/2023

I know most of y’all have seen the update on my personal page, but I wanted to do a more complete update on this page since I tend to forget about it 😂

On Friday, Benjamin and I drove to Gainesville for his monthly IVIG infusion. We left Tallahassee grossly early and I was reminded why I don’t love making that drive in the early morning hours. My mom joined us in the infusion room again and helped me entertain the now mobile little monster.

On Thursday night, I texted my community group from church and asked them to pray that Benjamin’s immunoglobulin levels would be high enough for his team to consider letting us switch to at home treatments. A little back story, when Marjorie went back to preschool in August, she started bringing home all of the delightful preschool germs and shared them with all of us. But the kept getting and staying sick with these mild and annoying colds for weeks at a time . One day I asked his transplant coordinator, who is his Shands mama and my coffee fairy, if it was normal for transplant kids to stay so sick so often. She had us test his immune system levels and we found that his numbers were at ZERO. So his immune system was basically turned off. Later further genetic testing would show there’s no underlying reason, other than the 2 immunosuppressants that keep his body from rejecting his perfect heart. We began ivig infusions in November, and his immune system has gradually been getting the memo and creating immunoglobulins. On Friday, the Rheumatology Nurse Practitioner we’ve been seeing came in and told us she couldn’t believe how high his numbers were and that we could start moving forward with switching to treatment at home! That will be a process, and will involve a few trips to the clinic for training for us to learn how to do it, but should be much shorter in terms of length of time. I texted my community group as soon as she left and updated them, bc I do firmly believe their prayers (and the prayers of so many of you) have been used by God to sustain this big little boy.

As I’ve mentioned in other posts, it’s easy to be discouraged by what Benjo isn’t doing developmentally yet, but on Friday, the same nurse practitioner was so excited by how much he was doing that he wasn’t doing when she saw him a month ago: Crawling, moving around, causing general mayhem, waving, feeding himself, etc. He’s had a monumental month, and it’s so exciting 💕

We spent Friday night at the lake house with my parents, and that was so sweet. Holding my squirmy baby on the same dock where I spent countless hours begging God for his very life was a healing moment that I didn’t know my mama heart needed.