Tag Archives: epilepsy

Bring on the Research! Happy for ALS

I am so happy all this attention for ALS has come from an accidental, viral social media game. It means (for the most part) people are open to learning new things and that we can find the good in people. It’s also an impressive example that good can come out of my beloved digital world. I am equally very excited for everyone who suffers from this disease. This new surge of money will mean research and then answers, and that can mean new ideas and hope. Again, I am SO GLAD for this cause. I don’t want the fun to end! We are just now getting tapped to do ours. (More proof of the lasting effect of the “trickle-down” effect). And of course, I felt the need to explain how we are putting our spin on the challenge. Naturally, our cause is epilepsy and I think that’s ok. (Click photo to watch video)

OUR OVERDUE ICE BUCKET CHALLENGE – click to view video

I don’t want this to seem like I’m jealous or greedy, because I get it, not everyone can give to every charity out there. Not everyone can even make time to do a little something for a few charities. But everyone CAN become more educated on as many issues as possible. A better understanding of how others live in the most challenging situations can be a great way to grow and become a more compassionate, more forgiving, more loving person. You wouldn’t believe what it can do to you when you meet someone who’s trapped in a different world.

I could never imagine how it must feel to live with ALS. I really don’t know how to show my compassion and sorrow for their struggles. But I DO know what it’s like to live with something that no one can understand, that has very little research. Epilepsy is many times referred to as one of the silent suffering illnesses because you can appear totally normal, so no one suspects anything is wrong with you. As opposed to the physically debilitating ones, people don’t stop to help because they don’t know you might need it.

And that’s why I’m so happy for ALS. We all need more compassionate people. So if even 10% of people who have done this chilling challenge are reading up on the disease, then hooray. The next time they see someone in need, hopefully they’ll make eye contact, hold open a door — maybe they can make a change.

Because in both our cases, the need for more research is a painful reality. And I believe research for one cause could mean advances for us all.

Another night at the Castle

So the update that goes with these happy photos is this: we thought we might go home today because she has been doing so well we don’t even have an IV anymore. (She managed to kill or pull out all 3 in 4 days). But we will stay another night to be safe. It was on the 4/5 day that she had her first bleed after the surgery last time.

So now we just hang out and we are free to roam the halls. There is a good chance we go home tomorrow provided that Hematology is satisfied she is stable. Everybody else has cleared her. So we have one more night here at the castle.

Mommy rant: Hospital Livin’

My view. Let’s just say ICU rooms aren’t designed for the parents. Somewhere over there beyond the cords and electrical stalactites is my daughter.

And I get it.. It’s about her not me. It’s about the nurses and doctors who need to give her what she needs. But it’s still annoying that I can’t see her when I lie down but I can count the 18 back up power outlets.

Something new to worry about

Our planned surgery is next Tuesday. Thought it would never get here. As I can’t say it enough, again, thank you to everyone who has helped us big and small. It’s been a wonderful month overall. 

We’ve been able to spend so much quality time together as a family and even when Reese has had bad days, we’ve managed through and been grateful for all our good memories. I know you can tell the difference from her pictures. Aside from that scar, you’d never know how sick she really is… unhealthy brain tissue, possible brain damage, unbalanced diet, adrenal deficient, prone to mood swings, developmentally delayed and now a rare blood disorder. (More info further down). 

Yes, you could say coming way down on the steroid dose has made more than a little change in her visible appearance. What we didn’t realize or expect is that it also seems to have opened up her development as well. So many milestones are getting closer. Some are even zooming by. It’s been a great month. Who would have thought she could bite her food, tackle stairs, stack objects, get back her signing and laughing all in six weeks!

So Tuesday is our next chapter and we are heading toward it as optimistically as we can. There are no guarantees and there is no probability we can count on to ensure she will be herself or better when she wakes up this time. But you can bet no matter what therapy she needs or what new challenges we face, we aren’t giving up. Not now. We know she is capable of so much. 

And we will keep all this positive energy despite our new worry. We know very little, and in some ways it’s good to have something else to think about for a change, but we are glad we’ve discovered she does in fact, have a rare bleeding disorder that was to blame (most likely) for her two bleeding emergencies after the first surgery. I’m sure our surgeon is thrilled to hear this news. Not really. This little warrior is already a delicate case, so we will learn in the next 48 hours what the doctors plan to do to counter her condition and make her as stable and safe as possible during and after surgery. 

More to come in the next several days I’m sure.

Getting Spoiled

Someone is really spoiled. Since we got home from brain surgery, she’s been sleeping in our bed parts of every night for obvious reasons. Now she seems to have decided she should start out here and save us all the time of getting up.

And the guilt kicks in. I’ve held her down and let them do terrible things to her. Of course she can sleep wherever she wants! Can’t deny her snuggles with mom and dad, now can I?!!!!

Overall though, it’s been a great couple weeks. Staples came out last Tuesday and it took me two full days to work up courage to wash her hair. Even after getting used to touching staples, her raw, open skin again made me squeamish. We both cried a little but we survived.

Doctors decided to get some blood work done to see how she looks between surgeries. Poor lab tech hadn’t even heard of two of the tests they wanted. So after 6 vials (24ml of blood drawn) and double checking on the Internet, she still managed to miss one. We head back in the morning to make R suffer again. Sigh.

Therapists are all pleased with her post-op progress and everyone who knows what they’re talking about says her scar is healing. So we are just going with the flow right now.

Spent almost 2 hrs fussing in my arms. Maybe Motrin kicked in because all of a sudden I got playful giggles. #toddlerblues #craniotomy #epilepsy

Peace at the end of a long day

We waited 7.5 hours today to find out how our baby handled brain surgery. They called to give us an update every hour or so, but that’s still an insane amount of time to wait.  Good news is she is such a fighter, they say it was a “beautiful” surgery and we have survived part one of our plan to heal her. 

While we are happy about what we hear from the doctors and you are welcome to do a little jig with us, the hardest part has yet to come. Not sure what will turn out to be the winner —-  the waiting for the seizures to come or waiting to see how her little body reacts to the second surgery – where we remove part of her brain.

One of the first things they did when she arrived in ICU is attach the leads coming out of her skull to the machine that reads her brain activity. This nearly robotic machine, complete with flatscreen and a minion-shaped camera on top, constantly stands at the ready to capture Reese’s story. (See previous post and web site about this device).

She is now hooked up with a catheter, so add that to the surgery lines and she has 4 tubes coming in/out of her body, PLUS the 34 leads attached to the grids laying on the left side of her brain. 

I have had to remind myself at moments why we are doing all this. That this seemingly torturous activity we are choosing to inflict on the sweetest baby ever is in fact BETTER than the alternative. The alternative being the incessant seizures that start to cluster and get closer and closer together heading toward an unspeakable unknown. The life of never eating once seizures start because she can’t stay awake long enough between them to get any food down. A life that is completely unpredictable and dependent on severe medications. 

We’ve had such an exhausting day and every time we think we are going to rest, some other question or issue comes up that we need to get addressed and they day just flies by. 

Upside is we are getting the VIP treatment and we have our own private nurse. So this very pooped mommy and daddy are closing their eyes for the night. This room is warm and quiet and despite how it looks like the white tent scene from ET in here, I’m very comfortable and very trusting of the staff around us. 

Thank you for your patience, your support and love, and for hanging in there with us. We haven’t taken many pictures. Remember, this is the part that Reese probably prefers we don’t document — they predict a lot of swelling in her face tomorrow so we leave you with this little face for now. 

We will see what tomorrow brings. It’s not going to be pretty, or easy for Reesey, but you are all part of the team who is helping her get past this.  So we thank you very much!

Ready

image

It’s all in the lines.
Skips, jumps, hills and mountains.
Nothing.
Everything.
Waves, even and steady.
Your breathing,
not your brain.

And my heart
it falls.
My lungs
lose air.
Frozen. Terrified. Ready.
Ready???
There is no such thing.
I fail you.
I’m not strong enough.
Crashing, reeling.
My emotions,
not the waves,
not you.

You are still sleeping,
Peaceful.
Ready.

 

copyright 2014: Carrie Mamantov, The Rugrat Project 

Doing Epilepsy Month in style

We think about epilepsy every day. And yet, it’s good to still have a month to think about it, as a message, rather than as a disease, life-threatening illness, never-ending challenge, burden….. I could keep going. 

Here we are 16 months into our journey, and I am trying to be committed to doing more for the cause. Because it’s not just a cause, it’s for Reese. If research was further along and equipment was more in tune with small brains like hers, we might not be sitting here with such little information. The waiting is agonizing. The fact that it’s because we don’t know enough, in today’s technology age, is so hard for the tech geek in me to swallow. 

We kicked off November with an adult night out at the North Texas Epilepsy Foundation’s first gala fundraiser. We donned our boots and tried to do our roots right, attending a cowboy chic dancing and casino night at Gillys. Everyone is coming with us next year and we are going to make it a huge party of our own! The most important part to us was connecting with the foundation’s director and getting to see a familiar face from our support group meeting.

As if we needed the daily reminder, but the foundation’s Facebook page reliably keeps posting new facts or awareness messages that I debate whether to share to all my friends or not. Believe it or not, I am pacing my rhetoric. I worry people will tune out and be annoyed. And I really don’t talk about it for sympathy. I look back to 22 months ago — my old self — and it never occurred to that old me you could be so affected by seizures. Not sure I even understood what one was.

Good news is there are tons of examples from others more experienced in this message than we are. It’s really a communicator’s dream to have plenty of content to work with. Which is why I’ve treated this like any other communications plan I would build, and I’m plotting when to post what and space out what we are going to do, to make it interesting, and informative for you.

This weekend, we turned up the dial and it was all about epilepsy. We were surrounded with support after we took a big leap and asked our soccer team to wear purple ribbons during the game. We have a few good pictures to remember the moment. Bryan is my hero after this weekend. I hadn’t prepared well enough and was going to put the ribbons together Saturday morning before the game. But then late Friday I learned from our Neurologist’s office they had a seminar at the hospital on surgery options. Seeing I could be in two places at once, Bryan and Davis made the trip to JoAnn’s, got the ribbon and did all the cutting, gluing and pinning to create these beauties. Like I said, my hero. 

Reese and I headed downtown for our seminar and she got to be snuggled on by volunteer baby-sitters, and her usual fans from the Neurology department. Yes, they work on Saturdays sometimes. They are amazing. We were cutting it close to get back in time for Davis’s game, with the 45-minute drive, but we got there for the second half. The guest of honor snoozed in the car, but woke up just in time for post-game pictures. More to come. 

Highlights from the seminar to come separately.