Amee’s Village

Good news first — my incision has fully closed on the outside, which is such a huge relief. It’s still soft underneath, so I’m being very cautious with it. I’m keeping everything gentle right now when it comes to brushing, washing my hair, and just overall care around the area.

I am SO thankful to finally be at the point where everything is fully covered and healing on the surface.

That said, Taking it easy today because I’ve had some new and changes over the past few days. I’ve developed a pain that just isn’t going away, and my seizure-like episodes have increased again. I’ve also noticed a very tender, softball-sized area on the left side of my head near the crown/top. It’s painful to touch, but also aches constantly even when I’m not touching it. The pain in that area started this past weekend and hasn’t really eased up.

I’m keeping a close eye on everything and will be following up with my medical team as needed. Just taking things one step at a time and staying cautious.

Thank you all for continuing to check in and support me through all of this.

This week was a big one for our family.

Our littlest celebrated her last year of single digits, so we took her to Disney World for her 9th birthday. Thanks to being able to rent a scooter, I was able to keep up with everyone and be part of the adventure. As grateful as I was for it, I won’t lie—it was still incredibly exhausting. The long periods of sitting really took a toll on my back, and I’m still healing from the lumbar drain removal, which unfortunately left me with a small tear that caused a spinal CSF leak.

I wasn’t allowed to ride any roller coasters, but I was able to ride Flight of Passage twice with Bella. If you’ve never experienced it, it’s a simulation ride, and it was absolutely incredible. The first time we rode, I spent most of the ride watching her face as she experienced the magic for the very first time. Seeing her wonder, excitement, and pure joy was worth every ache and every setback.

This trip will live in my heart for the rest of my days, and I have a feeling it became one of Bella’s core memories too.

We enjoyed several of the slower attractions together, and she and her dad tackled all the rides I couldn’t go on. Watching them make those memories together was just as special.

Now for the “no good deed goes unpunished” part…

Last night, after returning from Disney Springs for dinner, I noticed three spots along my incision had reopened. Thankfully, I already have an appointment with my surgeon tomorrow. I am more than ready for this incision to fully close and STAY closed.

My surgeon recently increased my Vitamin C to 500mg daily to help boost collagen production and support healing. At this point, I’m not sure what else can be done besides giving it time, following instructions, and praying that I avoid any more infections or complications.

While this is certainly another setback, I can honestly say it was worth it. I would do it all over again just to see the joy on Bella’s face and to give her these memories.

Thank you all for continuing to follow along, pray, and cheer me on through this journey. ❤️

Quick update after seeing my surgeon last Friday:

Dr. Jobe was pleased with how my incision is healing again, which was really encouraging to hear. The antibiotics have been stopped for now since everything looks good and there are no signs pointing to ongoing infection. We’ll go back on the 12th for one more check just to make sure healing continues and the infection is truly behind us.

Because I’m still having some swelling in my scalp/temple area, we’re staying watchful and keeping a close eye on things.

We also talked again about the bigger picture and what comes next. In July, at my 3-month post-op visit, we’ll reassess symptoms and decide if a lumbar puncture is needed to check my CSF pressure. If things still appear to be in a high-pressure state and pressure is elevated, we may need to discuss a VP shunt.

I’ll be honest—that’s something I really hope to avoid if at all possible. Shunts can absolutely help many people and can be life-changing when they work well, but they can also come with challenges. There can be complications like tubing kinks or blockages, abdominal pain, infection risk, over-drainage or under-drainage, and sometimes ongoing headaches or migraines even after placement. Some people do really well with them, while others need revisions or continue navigating symptoms. It’s a lot to consider, and I’m hopeful we can avoid that road if possible—but grateful to have options if we need them.

For now, we’re still very much in “watch and wait” mode.

The good news is that my strength and stamina are improving. I’m tolerating being up more, moving around better, and walking stronger than I was even a couple weeks ago—and I’m really thankful for that progress.

The harder part is that the seizure-like episodes, migraines, and some of the strange neurological symptoms are still hanging around. Recovery definitely hasn’t been a straight line.

But one day at a time, right?

Thank you all for the prayers, messages, check-ins, and encouragement. It truly means so much to our family. 🤍

A little update 💛

As you know, yesterday I ended up back in the ER because of continued swelling and drainage from my incision after surgery. After being evaluated and having a CT scan done, the reassuring news is there was no intracranial complication and no signs of a deep infection and what is infected is responding appropriately to the antibiotics.

One thing they did find is that part of my incision has dehisced (opened back up), which explains a lot of the drainage and swelling I’ve been dealing with. Although there is soft tissue infection present, it is thankfully being controlled well with strong antibiotics and they feel like we caught it early enough to avoid any serious issues.
Unfortunately, with the incision opening, healing is going to take longer than originally expected. The body has to work harder to heal tissue when the wound edges aren’t fully closed, so it means more close monitoring, wound care, and a little more patience than I was hoping for. It’s definitely discouraging and not the update I wanted to share, but I’m grateful it’s being treated aggressively and watched closely.

More concerning; During the doctor’s assessment, he was able to see clear drainage coming from the incision, and the CT also showed soft tissue swelling with a small pocket of air under the scalp. Because of my history, those findings raise concern for another possible CSF leak, since clear drainage can sometimes be spinal fluid and air under the scalp can happen when there’s a communication allowing fluid or air to pass through. Because of my history with the CSF leak and the continued intermittent clear drainage from my ear and scalp swelling, they did consider whether that could be happening again, and while there wasn’t definitive evidence of an active leak on imaging, it’s still something they want monitored closely. I do have a follow-up with my neurosurgeon on Friday so we can take another close look and decide on next steps.

This healing journey has definitely had some unexpected twists, and I won’t pretend it hasn’t been stressful at times. But I’m incredibly thankful for reassuring imaging, for doctors taking things seriously, and for every prayer, message, and bit of encouragement from this village.

Thank you all for continuing to check in on me and lift me up. One day at a time… and celebrating every bit of progress along the way. 💛

A quick health update for my village 💛

I’m about 6 weeks out from my middle fossa craniotomy (April 14), and this past week has been a little unsettling.

My incision had fully sealed, but then unexpectedly opened back up overnight last week. Since then I’ve been dealing with intermittent swelling in my temple, scalp, and face on the left side. The swelling comes and goes, and I’ve noticed that when watery drainage happens from my left ear, some of that pressure seems to ease.

This morning I woke up with more watery drainage from my ear and the swelling had returned again, so we decided to come to the ER and get checked out.

Healing can be such a strange and unpredictable process, and I’m trying to listen to my body while staying in close contact with my doctors. Some moments I feel encouraged, and other moments feel heavier and bring a lot more questions.

I’m sharing because so many of you have checked in, prayed, sent messages, and carried me through this journey in ways I can’t fully put into words. I’m deeply grateful.

I’d appreciate continued prayers for wisdom for my medical team, answers, and for peace while I navigate the next steps. One day at a time. 🤍

A little update on the incision and face swelling situation 🙌

After a couple of days, I am finally starting to see some improvement. The swelling has gone down some, and my scalp feels much less tight than it did before. There was an area around my scalp and temple, a little bigger than a softball, that had become raised, tight, and swollen. It didn’t necessarily hurt, but it had a very strange numb sensation that was hard to explain.

Now that I’m on day 3 of antibiotics, I can honestly say I feel a lot better than I did before starting them. The antibiotics are definitely causing some GI issues, but honestly, I’ll take that if it means they’re doing their job. According to my doctor, this infection was getting dangerously close to crossing into sepsis territory, so I’m incredibly grateful we caught it when we did.

I also have a follow-up appointment with my surgeon next Friday. At that appointment, they’ll assess the condition of my incision and determine whether it’s finally going to heal on its own or if they may need to go back in, clean everything out, and close it up again.

On a brighter note, my oldest daughter is having her baby shower 🍼🤰 tomorrow in Orlando, and I am so excited about it. I’m praying my body will cooperate enough to let me attend. The biggest concern is the drive; it’s about 3 hours from where I live to where she lives, but perseverance can accomplish almost anything. 💪

Please keep praying that the antibiotics fully clear the infection, that my follow-up appointment brings good news, and that my body is finally able to heal the way it’s supposed to. 🤍

I spoke to my surgeon today and he called in antibiotics for me. Last night after my shower, a big piece of surgical glue came off and exposed a spot that honestly looks concerning. At almost 6 weeks post-op, this area really should have been fully closed by now, so seeing it still this open is definitely unsettling.

They want me to come in next Friday so they can get a better look at it after I’ve completed a round of antibiotics. I’m really hoping this turns out to be the culprit behind all of the facial swelling and some of the other issues I’ve been dealing with lately.

Thank you all for continuing to check on me, pray for me, and support me through this recovery. ❤️

*I’ll post the pictures of my incision in the comments if you want to see it.

Three days of facial swelling now. The swelling seems to come and go, and I’m still trying to figure out what is normal healing versus something that needs more attention. I have called Dr. Jobe’s office, but I haven’t heard back yet. He usually isn’t in the office Tuesday–Thursday, so it may be Friday before I hear from him unless another provider responds sooner.

I’m continuing to monitor everything closely, especially with the ongoing ear drainage, pressure, and balance/equilibrium issues. Some moments I feel encouraged because the swelling improves, and other moments it flares right back up again.

Thank you all for continuing to check on me, share your experiences, and help me not feel so alone through this recovery process. 💜

Yesterday my face was incredibly swollen, especially around my left eye and forehead, and this morning I woke up with a lot of watery drainage coming from my left ear again. The swelling has thankfully gone down some today, but now I’m struggling a lot with equilibrium and balance issues.

I called my surgeon and left a message because my next follow-up isn’t until July, and at this point I figured it’s better to be safe than sorry. Hopefully I’ll hear back soon.

It’s hard to even know what emotion fits what I’m dealing with right now. Is this normal healing? Am I still leaking? Did the repair fail? Will I end up needing a shunt? There are just so many questions and not enough answers.

Trying to stay hopeful while also listening to my body is such a difficult balance.

Post-op recovery is wild. For the most part, things are moving along beautifully. My incision is healing so nicely, and my hair where it was shaved has already grown back so quickly.

I still have some wonky symptoms daily, but it’s definitely an ebb and flow kind of process.

The numbness on my scalp has finally gone away… and honestly, I kind of wish I was still numb. 😅 There’s a lot more tenderness on my head now. Right after surgery I could actually lay on the side with the incision and barely feel it. Now I can still lay on that side, but only for shorter stretches, and I have to be really mindful of how I position my head. What’s most puzzling is that the really tender spots aren’t even where I expected them to be — it’s more at the top/crown area of my head toward the left side, if that makes sense.

Yesterday was a really good day though. I finally got my kitchen fully cleaned back to my standards (iykyk… and if you’re a mom/wife, you REALLY know 😂) and I even got some other light housework done too. It made me so happy to be able to accomplish those little everyday things again. My energy is definitely improving day by day. I still need to learn how to pace myself, but that’s always been a struggle for me. I get in the mindset of “I feel so good right now, let me do ALL the things!” …then the next day I can barely move. 😂

All in all, I truly feel like I’m turning a corner and things are getting better and better. I cannot wait to spend more quality time with my kids and husband again — going to the beach, the pool, riding the golf cart, amusement parks… all of it. I’m just really looking forward to living life fully again. ❤️