Uncompressed: Seanna's Journey to Life 2.0

21/09/2025

Seanna is home… While the doctors decide the best course of action, Seanna has been sent home. Being back in your own bed helps. Also, balancing proper hydration and nutrition has also made her feel somewhat better - still far from normal, but better. One step at a time.. Day by day - hoping Life 2.0 is in our future 💜🌻

20/09/2025

16/09/2025

Walking this road with Seanna has meant becoming part mom, part medical researcher. Families like ours are forced to upskill, learning medical terms, reading studies, and piecing together answers between chat groups with other moms and patients navigating the same conditions, because too often, specialists stop looking when symptoms don’t fit neatly into a textbook.

It’s exhausting. Seanna has endured more than most, and yet there are still days when I feel like I’m fighting to have her reality seen as much as I’m fighting her conditions.

“Google just launched MedGemma, an open-source AI designed for clinical use. Its 4B multimodal version can read both text and medical images, while its 27B text-only model handles complex reasoning. In tests like MedQA, CheXpert, and MIMIC-CXR, MedGemma not only outperformed earlier systems but matched or even exceeded doctors in some tasks.”

For families navigating rare conditions, this could ultimately be a game changer. If specialists embrace tools like MedGemma, it could help them connect dots faster and see what textbooks miss, sparing families years of pain, gaslighting and even 💵 💵.

I am not discounting the specialist unicorns. They do exist. The ones that genuinely cares.

For Seanna, and so many others like her, I hope this marks the beginning of real change. 🌻💜

06/09/2025

Today was HUGE, and for the first time in a very long time, we got a real glimpse of Life 2.0

This morning Seanna had a celiac plexus block, where medication is injected around a cluster of nerves deep in the abdomen. These nerves carry pain signals from the stomach, intestines, and even the pelvis.

The result was incredible. Seanna’s pain completely disappeared, every bit of it, including the pelvic pain that has been part of her life for so long. Seeing her lying there with tears or joy finally being pain-free, even if only for a while, was something amazing.

What made it even more special was that Seanna was able to enjoy some of her favourite foods without pain. After so many months of eating being a source of agony, watching her eat felt like a glimpse of normal. Is it possible that family meals around a table will become our new routine again?

What this inevitably tells us is that she has MALS. Her pain has a strong nerve-driven component, meaning the nerves are compressed and amplifying pain signals. This Celiac Ganglion also is a sympathetic set of nerves so some things actually makes sense now. The vascular element is not off the table yet either. While doing the block, the surgeon noticed some areas of possible vascular compression, so they have scheduled a special IVUS study for Tuesday to take a closer look.

Sadly the block is temporary, so the pain will return once the medication wears off. This gives her specialist team the information they need to figure out the next move, whether that means treating the nerve pathways, addressing a vascular issue, or both.

Three years into this journey, it has been setback after setback, but today felt different. Today, for the first time, we saw what life could be like for Seanna without pain. 🌻💜

02/09/2025

This sweet special child has been admitted for MALS evaluation. The specialist agrees that all her symptoms align. A CVP will also be placed this evening as no nurse or doctor can find a vein to place a pheripheral line for IV Fluids. The joys of a Connective Tissue Disorder. Praying this is the last one… 🌻💜

01/09/2025

31/08/2025

3 Years into this journey and the elephant has not yet quite released its weight on our chests. The AVCS we so hoped would skip this poor child seems to have poked its awful head. Was it always there and we just did not see it - I don’t know. Did fixing the others bring it to the forefront, that I don’t know either. This one however is also brutal. It takes away Seanna’s ability to eat without pain. Something we all take for granted has once again been taken away from her! Seanna’s doctors and I suspect she may have Median Arcuate Ligament Syndrome (MALS). This happens when a band of tissue presses on one of the main arteries and nerves in the abdomen, cutting off blood flow and causing pain, nausea and a list of other symptoms.

To help her body get the strength it needs, we have placed a NJ tube and started enteral feeding. This was not an easy decision, but it gives her a way to receive nutrition especially since she has built tolerance to probably most pain meds.

What makes this even harder is that it is not unusual for someone with hEDS (like Seanna), who already has one vascular compression, to face more than one. She has pretty much now completed the circle. It is devastating to keep watching these new hurdles appear, but we have to hold onto hope that this may finally the last. We have been referred to a MALS specialist for work up, confirmation and hopefully a plan moving forward.

As the date of the anniversary of her very first SMAS surgery looms, may this please now be it.. 🌻💜

30/08/2025

💌 Dear Silent Illness Warrior,

You wake up every day with a body that doesn’t always obey,
a heart full of courage,
and a smile that hides stories no one else sees.

💔 Most people won’t understand what it takes for you to get out of bed,
to show up, to keep going — even when your energy is gone before the day has begun.

But I see you.
I see the strength it takes to smile through pain,
to explain symptoms that sound invisible,
to say “I’m fine” when your soul is tired.

🌧 You carry a storm inside of you,
yet somehow…
you still bring light to others.

You are not weak.
You are not lazy.
You are not being dramatic.
You are living a reality most will never comprehend.

🛡 You are the quiet fighter.
The warrior without armor.
The soul who still dreams, even when the body says no.

If no one told you today
✨ You are doing incredibly.
✨ Your resilience is sacred.
✨ Your journey matters.

Rest when you need to.
Cry if you must.
But never forget this:

Even in your stillness,
even in your silence,
you are healing.
And you are not alone.

With love,
From one who sees you 💜🌻