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6 Reminders for Families Learning to Live with Epilepsy

As part of our commitment to sharing about epilepsy every November, we are making a video this year. There was too much info to fit and this is something I thought might be a good blog list.

Our list of reminders for families first getting accustomed to fighting this battle.

1.  Face the monsters. Don’t be afraid to let others see epilepsy. It’s hard, but it’s also a powerful way to get people to understand you need their support. A very brave woman has a TED talk about how we each have a closet we are afraid to come out of. I think as parents we feel vulnerable opening up to others because it feels like we’re admitting we’ve failed as parents, because we can’t fix this problem without help. Don’t be afraid.

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Daddy’s car has bows

This tickles me. Hubs has kids so I’m in his car for a #change. The bow is a great reminder of what a wonderful daddy he is. #feelgoodmoment #parenting #teamwork #partnerinlife #ourstory #superdad

Video of our Happy Girl

Happy girl. At least for a couple seconds. Then she started whining to get down. We get 10-12 min in the high chair these days before she is just done.

It was still a nice dinner, she was in a chatty mood. Gave Daddy a few special looks, too. Of course I wasn’t fast enough to catch her sounds.

Our Definition of O.K.

Reese has had a great day — therapy and music class went well. (Video posted separately.) She made eye contact, and I think, even tried to imitate a friend when we were dancing. That stimulation comes home with her and she is a happy girl. She is someone who wants to make eye contact with her big brother and it was so sweet how she was smiling at him. They had a nice lunch together (normally she is napping), and Davis was so fulfilled by that 3-5 minutes of deep connection with his beloved baby sister. So it’s a high for me, for now, but there’s always more than what you see on the surface, right?

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If you ask us, we will tell you she is O.K., or things are good. And on the surface they are. Reese is out of danger with the ear infection, for now, and in general she is back to herself. It takes several days after that many seizures.  Aside from this sick episode, you no doubt have seen lots of happy pictures. I want everyone to experience her smile and know the littler person that she is becoming. But those moments are probably fewer than you realize.… some days more and some days less.

If I were being really honest I could share all the terrible faces she makes, where we just wish we could tell what she needs. Instead, I will just explain a few things…

1. She whines a lot. When she isn’t smiling, even sometimes when she is, she makes these sounds that we interpret as whining. But maybe it’s not meant to be a show of frustration, it’s just her preferred sound. Who knows. But it can really grate on your nerves after a while.

2. She grinds her teeth when she is awake. It seems to be when she is tired or upset, or maybe related to her ears, but good lord it’s insane how loud and spine-wrenching it is. We have tried to recreate the sound and it’s not even possible. Will be so glad when all those teeth are in.

3. Her attention is limited, so entertaining her with toys is always a challenge beyond five minutes. She wants to be held, or walking, or moving. She has sensory input issues and she needs more than most kids. She wants to be touched, and she wants to feel so she rubs things, puts things in her mouth and even pinches and scratches herself or us.

4. And then there is the bed time routine. For some reason, ever since the first round of surgeries, she has had issues falling asleep. She used to be so good at going to bed on her own. It seems because of her sensory issues she has a hard time self-soothing as well. Some nights she is calm and happy, just not sleepy. Most nights though, she is fidgety and restless and frustrated about not being able to fall asleep. She wants to, we can tell, she just has forgotten how for some reason. Bath time does help matters. It’s torture for her when we wash her hair, so then we comfort her until she stops crying and that basically goes straight into 1.5 hours of laying with her in our bed, sometimes walking with her, bouncing her like a newborn, and singing or talking gently in her ear.

So yes, she is doing well, as well as can be expected, and we are still working on what to do next for her. But honestly, her O.K. is never going to be what yours or mine is. It’s just another thing we have changed to get used to whatever is normal for her. Just thought we should be transparent and that some would like to know what the day-to-day is really like.

Out of Here

We met today’s goal! We are outta here. #epilepsywarrior #ourstory #hospitalpros #adios #shortandsweet (at Dell Children’s Medical Center of Central Texas)

Infusion time #justanotherday #ourstory #epilepsywarrior #justbrainsurgery @cookchildrens

When all else fails, this guy makes them laugh. Their eyes sparkle with anticipation when they see him coming wearing the impish “I’m gonna get you” face. And they BOTH just LOVE the tickles!!!!

But he’s also there when they cry and he loves holding them when they fall asleep. I personally love when he spots a teaching moment and captivates their attention effortlessly. He takes such good care of us all and never complains. He definitely does his share (and then some), whether it’s the countless trips to get dinner when mommy fails to plan ahead, or the early mornings when this night owl isn’t ready to get up.

For six years (almost to the day), this guy has blown me away with his love for his children. He will be the first to admit he had no idea what they would do to him and I had no idea just how amazing he would be. So glad my grandma was right about this one. 😉

This guy deserves so much for this Father’s Day, but I know he has all he really cares about right here in this photo, and I love him even more for that.

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.

She’s On the Move

And now for the real fun! As she gets her walking legs more and more, she has started to outsmart us and it’s such a thrill to see her figure things out. Our gates don’t hold, she is always out the door before we remember to shut it, and no cabinet is safe. We find her in the strangest places — the closet, the laundry room, trying to climb in the toy box… It’s all new territory for this family.

Of course this comes with challenges. Most toddlers exploring like this also know what “No” means and have a grasp on what mommy and daddy don’t like. This girl is still oblivious. That or she has the best damn poker face on the planet. We know it means we have to be extra vigilant about her safety since she doesn’t understand the dangers around her. And of course that’s a big responsibility for Davis, too.

She’s also solving new problems. This is a great thing for Mom, Dad and Davis, who all love a good puzzle. A quick list here for my memory later:
– putting lids/tops on things
– a few new facial expressions, almost playing coy a couple times
– lifting leg to climb up on stuff
– eating from a fork (kind of)
– biting more crunchy foods — had first real rice cake today!!!
– and potentially the biggest in a while…

She is showing signs of understanding stacking! Pictures to come next time I catch her. But she is definitely close to mastering another big fine motor/cognitive development!

And all this despite having a seizure Saturday morning. Just one lonely episode. Looked the same as always, and she slept it off. But after an hour she sat up, looked at me with purpose in her big eyes and then stood up. Couldn’t believe it. Normally she would be so lethargic and wobbly. We’ve been on edge all weekend, but so far so good. Who knows why, but we will take it.

Twenty-two days to surgery and counting.