Category Archives: Living with epilepsy

(Written Wed night, but fell asleep before I could finish)

Don’t ask me how it’s possible. Our little warrior is blowing us away with her strength. Only 24 hrs after brain surgery and she is sitting up.

I know it’s hard to believe, but we aren’t actually hoping for recovery right now. Yes, we want her to be healthy and strong, but what we really want is for her to have seizures so the extra special grid laying on her brain right now will capture the precise location of her epicenter and allow them to remove all of the bad stuff without having to remove too much extra.

We learned today that this concept makes complete sense to Davis. He calls it “the dirt”. I wish I had been recording him as he explained there is dirt in Reese’s brain, and it’s a mess and so they are just cleaning it up. “It’s really dirty in there and they’re cleaning it out, mom.” 

Yes, my love, that is EXACTLY what they’re doing. If you need any more help understanding this extremely complex concept, I’m sure Davis will be happy to help. 🙂

Never got this posted yesterday. Luckily we still have today #purpleday.

Reese just had her dressings changed for the first time and they said she did surprisingly well. Better than some teenagers. To me she looks miserable. They don’t know that she isn’t a crier. They don’t realize that all of this stuff touching her head and wrapped on her hands is driving her nuts.

I can’t tell you how hard it is to not yell at people for touching her. It’s like when you have to countdown from 20 to not lose your temper at our kids… But so much worse. I can tell she is scared and she won’t let me touch her and it’s agonizing to feel so helpless.

Her face is starting to swell so you don’t want pictures now. I want everyone to have this beautiful face in their minds, and not be saddened by what we are seeing.

Thank you to all who are wearing purple! You’re wonderful! And when someone comments on that beautiful shirt please tell them it’s for epilepsy awareness.

Second night after surgery

And what a day we’ve had! This morning I got up from a pretty good night sleep to a splitting headache. To which I realized I have no room to complain compared to my daughter’s pain. Within 5 minutes of me standing up, I was watching them redress her bandages for the first time and I got a little light headed. I think combining the sudden jump up from sleeping, the headache and the gruesome sight before me, I just couldn’t process it all. Luckily I recovered quickly. I don’t like missing anything that they are doing to her.

We have found the more on top of things we are, the more we update nurses on what we’ve seen, what others have done… we repeat medicine needs, we ask for things…. it’s all helping to make sure she gets the best care. They don’t know her like we do. And as hard as it is to be assertive sometimes when you clearly don’t know the lingo or the details, we’ve just come to not care about people’s feelings. We are nice and respectful, but we tell them what we want for her, and we tell them when they’re wrong.  

But let’s get to the highlights of the day! Davis came for a visit and we enjoyed the therapy dogs’, Chanel and Ralph, second birthday party! Davis won a prize and we made sure to share with other kids. We had lunch and cake, worked on his homework and then played some more. But the biggest part of the day was having Davis see Reese for the first time. So scary for us, but so worth it. He was so pleased to be able to help out by feeding her. 

He is a love and has a huge heart. He apparently somehow senses this time is different. We’ve tried to prepare him for weeks and months that this was coming. We talked about it when the ambulance came Sunday. He is never grave and sad, but he is empathetic somehow. He is also a busy boy and doesn’t stay focused on any one worry long. It’s a great upside to him being his age and not dwelling on Reese’s gory details. I mean heck, he hardly missed us for a week over spring break!

So when he asked grandma Tue night when we were coming home, it was a bit of a shock that he was already thinking about us. And when he arrived at the hospital (grandparents took him out of school early), and he saw our favorite Chlid Life Specialist Kat, he told her everything and said he hadn’t seen his baby sister yet. His love for her is so real. I get more emotional at the two of them than anything. So he came up to the room after we prepped him for how she would look and he was all just fine with it. He asked what was wrong with her eye, and we said it was like a bruise that just swelled up a little. He was fine with that. And in about five minutes he was read to leave. Checked that off his worry list.

And then that wasn’t even the end to the day! Reese decided she felt so good she could sit up in bed. So we adjusted, we padded, and we accommodated her. She is so amazingly strong! I’m amazed. So amazed. I was queasy just watching her lean forward and seeing the leads in the back of her skull tug and move. It gives me the willies to think how it feels. But she doesn’t have the best reaction time to nerve-related responses, so it could be she doesn’t feel it at all, or it could be she doesn’t know how to process what she is feeling.

Either way, she sat up for maybe 30 minutes and played with her toys and was more interested in eating and taking some water. She exhausted herself though and needed to snooze right there sitting up.

They changed her head bandages two more times last night. It’s about a 20 min process each time and we help, because we want to and because we need to feel needed. It also gives me the willies. But each time I see her stitches and the cords coming out through her skin, I am a little less bothered by it.

So we’ve all had a big day and we’re going to get some real sleep I think.  

Lost in the little things

We don’t talk much about Reese’s development. In many ways it’s her biggest problem from all that we deal with every day. Of course she doesn’t know it, well most of the time. Sometimes she looks at me and is so intently talking to me with her eyes, I feel like she must be frustrated and be trying to tell me something so important. And her brother doesn’t get it because he doesn’t have anything to compare it to. So we are thankful for that, for now.

So we focus on the little things. It’s the reason we sit on the floor with her every chance we get. It’s also why I am constantly videoing and snapping photos — we never know when we are going to have a big moment.

There are so many little milestones she hasn’t hit yet that we celebrate everything. Lately, despite the hospital set back, and her ceasing all real babble talk, we are seeing little signs of progress. I mean you would hope so, considering she does therapy 3 days a week. Plus Gymboree and music class. But so much time has gone by where we focus on the big goals like feeding herself and walking, and we don’t see a change and then we get down.

So I am reveling in the little things these days.

1. Her hands. She has been picking up more things and holding two things in one hand. She crawls around and stands up and down keeping a hold of the puzzle piece or alphabet letter. Just having this control and wanting to investigate and hold and play is great to see.

2. Her feet. We went longer than most without shoes. She didn’t need them and she didn’t like them much either. So now after a few months of being more consistent we have news.

You don’t realize this as a first-time parent but it’s a big deal to get dressed. You dress your kid every day as an infant and then one day they start pushing a little to help you get stuff on. And then without much coaxing they are doing it more and you just take it for granted. It’s normally about 9 months. Reese started working with us on arms and legs in July at about 16 months. So when she picked up her foot to put her shoe on last weekend, we were floored. She has even put a shoe to her foot showing she knows there is a connection. Also huge.

3. Her magnets. She has refrigerator magnets, both alphabet and animals. Loves them these days. Can pull them off and bang them together like a rock star drummer with his sticks. She always has one in each hand.

Last night I watched her slowly and deliberately push the magnet to the board, it stuck, and she let go just as slowly. And then she tried the other one but it was facing the wrong way. I encouraged her several more times and we clapped each time. Then she was done.

At least she was done with me. She moved over to a book and placed her two pieces on the book and studied them up close. Then picked them up, did her drummer thing and slowly put them down on the book. And clapped her hands, very proud of herself.

Amazing! Is this her mirroring me? Maybe. Is she just pleased with herself? Probably.

I realize it’s hard to not be in my shoes and still get excited. But here’s the catch. Reese throws everything. Not even throws, that would require intent. She drops. She has body awareness issues and when something in her hands moves away from her body like when she puts her arms out in the airplane pose, she forgets it is in her hand and drops it.

You have no doubt seen video of her doing this. It’s all she does. Until now. 🙂

4. Her kisses. We may have lost her talking, but I will never get tired of her little open-mouthed kisses. Somehow, somewhere in that tired brain of hers she knows this is something we do. Does she know it means I love you? I hope so.

There are times I think her instinct is to turn her head and pull away when she sees us come in for the kids. She doesn’t like people in her face. I don’t blame her. The meds, the pokes and all the doctors — it’s a lot. So sometimes she paused and looks at me and looks away but she doesn’t push me back. She holds still for the kiss and every once in a while she even leans in. We will take it.

Everything about her is little. I love her tiny feet and her soft skin. It’s wonderful to hold her and celebrate. But it’s even greater a feeling to just watch her as she figures this stuff out herself. And as far as we know from doctors of all kinds, the fact that she keeps finding new things to conquer is a good sign.

And that is why we are happily lost in the little things.

Why I love 3D now, the trip update

We know everyone is on the edge of their seats waiting for the big update. We don’t label this as good news exactly, but we do feel we have new insight thanks to some creative investigating by the specialist at Lurie Children’s.

Seems we may have found physical proof of the culprit causing Reese’s seizures. Our doctors have always contended there could be a blemish on her brain but they couldn’t see it, and wanted to wait until she was closer to 2 years old to check again with another MRI.

Guidance from this new doctor says we don’t have to wait. His fancy 3D machines and his experience enabled him to see a cortical displasia crossing horizontally from her left occipital to her left temporal lobe. The area right above the ear.

We spent an hour asking him questions and understanding what next steps could be. He praised the level of detail from our dr and all the ruling out we have gone through. He also felt overall Reese looked in great condition outside of her little brain. We have some recommendations and guidance from him we will now discuss with our primary epileptologist and go from there.

Coming up here, we worried he hadn’t looked too closely at her case, we are now really encouraged by his level of interest. We were concerned they wouldn’t take the case seriously, definitely not the issue. So while our road is far from over, we now feel we have done the right things to date and we can make a more informed decision for her next step.

The emotional side hasn’t kicked in yet. I realize this sounds very clinical, but we both live on the facts and the science. And the brain really is fascinating. So please know we are still processing and we have lots of research to do. We CAN say if it comes to surgery there is a good chance we will head back to Chicago based on how impressive the experience was.

We feel so loved from everyone’s support. Please don’t stop. It’s those unexpected moments when someone reaches out that really push us through. And we plan to thank you each of you some day, some how.

Our sweet girl loves everyone she meets and I know she is a feisty survivor who is going to make the most of this. And when we have passed through to the other side of this challenge you can bet we are going to do all we can to educate and advocate for more research and awareness. It’s the least we can do.

Oh and I apparently have strep. I am deeply sorry to everyone I may have exposed. I had no idea!

So that’s the short recap of our 3 days in Chicago and I am sure there is more to come.

Patience

It’s never been easy for me, that highly coveted virtue — Patience. And it’s particularly hard these days when we feel like we have so much hinging on Reese’s prognosis. A mercurial conversation pending new test results, doctor consultations and her daily progress report. It has been flabbergastingly complex how the inter-workings of her system, the meds, the therapy, the tests, all are co-dependent and yet, we need something to stand out to allow the other pieces to fall into place. Preferably into a logical place, and not just a thousand pieces crashing to the floor. And I think that’s what I fear the most. Bryan and I are planners. We like to dream and we like to build what if scenarios and then build dependencies and plans, to a fault. So right now we are facing literally more scenarios than we can mentally handle and every day it feels like a different one is taking the lead.

Why the ramblings? We spent over an hour with our smart, energetic (and most importantly) tenacious epileptologist — a neurologist who only deals with epilepsy. (I love btw that Word doesn’t know how to spell it either). And so here’s the update in the most logical way I can find to explain what our next set of scenarios is.

The update:

Her multiple weeks on steroids being wired like a junky and equally agitated weren’t for naught. Her brain activity shows a positive response that means her repeat (out of control) seizures would be less likely. And her development definitely took a leap forward. So while we had a normal EEG report as of April 10, we were afraid to share the news, not really understanding the full impact. We HAD an appointment for this coming Wed. with our epileptologist again, but we don’t need it now.

Next steps:

Reese is back on steroids. For joy. Doctors think her positive response to the previous steroids means she just didn’t get enough for her brain to fully heal. Seriously. This is the thinking. Sooo, we get to try another high dose, get an EEG again in two weeks (can we get a frequent visitor card?), and then depending on how much better her brain activity looks will determine how much longer she will be on steroids.

At the same time we continue to wait for several tests to come back that they ran while we were in the hospital. The potential scenarios are autoimmune, some rare genetic mutations that haven’t been fully mapped yet, or a metabolic option having to do with breaking down creatine in the brain.

No matter what, the outcome is Reese has something rare. And two of three seem to be fairly treatable.

Crummy week. What good is being right. Therapy.

Writing it makes it real… Don’t know whether it’s healthy therapy or teetering on depression though.

R is on her fifth seizure in 54 hours. The old pattern is back. One at night, one in the morning. Give her all day to recover, seems better, and then BAM! One right before bed. And so on. She has to have a virus. I am finally believing my mommy intuition knows best. Crappy part is there is nothing we can do to speed up the virus. So what good is being right.

Trying to make her comfortable, sleep lots, but most importantly she needs to eat! Or we will be back in hospital again…

First physical therapy session was today. Seems promising considering how simple the changes and activities are. If you or anyone you know is in OT or PT for babies, hug them. What an amazing skill they have to help a baby achieve milestones to learn and grow and stay on track!

Despite this week’s crummy start, knowing we have her regularly working with therapists who know what to look for has me feeling sooo much better.