Tag Archives: epilepsywarrior

Learning how to measure  time 

We live in a world of dates, deadlines and milestones. I catch myself measuring each special moment and holiday in reference to “last year” or the “last time.” The good news is we are beyond grateful for having the chance to say these words. We loved those moments like they might really be our last. But I want to push myself beyond the milestones and monthly markers and yet I find it’s much harder than I thought.

I can’t decide why and I’m not sure there is one single answer. Maybe it’s partly because we were trapped in a time warp for two years and it feels unnatural to actually move forward. But it’s also maybe because we got stuck in a safe place and staying in that rut is easier than starting fresh, even when the rut includes the scary memories always haunting us like silent ghosts.

As I have reviewed this weekend’s photos I am reminded of our pumpkin photos last year, how we felt, what we worried about and I wonder if maybe next year it will be too far away to keep up the comparison. But I also don’t want to ever forget, because this fight never stops for our little warrior nor for hundreds of thousands of others.

It’s almost November, our month to share, so I’ve decided it’s not all bad to keep reflecting on the crazy moments. It keeps us vigil and empathetic and these qualities are what I am most thankful for learning through our journey. It’s about the baby steps we keep taking and making sure we keep an open mind for the change we face.

We celebrate where we are and we want to make sure we spread the awareness so there will be many other stories like ours.

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.

Continue reading 6 Reminders for Families Learning to Live with Epilepsy

I was trying to see how red her hair is in the sunset, but ended up getting a straight on shot of the scar. I hate how it looks like the side of a baseball with the stitches in the perfect curve. #epilepsywarrior #brainsurgery

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.

The lone curl 

Ah the curl. The last of it’s kind. This precious head had been shaved on the left and cut to get out rats nests on the right. The drop in steroids has led to hair falling out and all that beautiful thickness is gone. And so this is all that remains of her former “big hair” days. Seems my choices are to tie it all back and give her a little orphan Annie fro or bid farewell to the lone curl and hope we can grow it all again somewhere down the road. #mamamusings #epilepsywarrior #hairwoes

It’s Time for the Dreaded Update

The overdue update is here. I realized everyone is wanting to know details of what happened and what’s going on, and the real question of — what does this mean now? So you can imagine that is why I think I’ve been avoiding this post. Without being boring, here’s a brief overview. 

After four days on antibiotics you would think her double ear infection would be clearing… Reese’s body didn’t like the Omnicef I guess, because she was getting worse and we didn’t even know it. 

“How could you not know she had a fever?!” I know it’s going through your head. Two problems for us — one Reese’s lack of communication skills makes it hard to tell what she is saying when she uses the same mannerisms for everything. Second, she has a high threshold for pain, because of her lack of sense of touch. There have been several times that we didn’t realize she was in pain because she can’t react to it very well. Like if she pinches her finger in a door or drops something on her foot, she hardly responds. Combine the two and you never know when her finger in her ear means pain verses just annoyed by her teething or her stitches. Not that it’s an excuse for the fever, but I didn’t know to look for it because she was doing so well. 

And that’s where we probably made it worse. We had the most amazing Fourth of July with my parents, we were at the Club, outside, it was hot, she was well hydrated and shaded, but still outside. And up late. Very late. And she loved every minute of it. But realizing after the fact she was not well it was probably stressing her system even more. A system that has no ability to fight infection. She is completely without an immune system thanks to her 14 months on steroids. 

I think it was just a perfect storm. She started seizing in the morning and we stayed calm. Heartbroken, but calm. We followed standard protocol and made sure she rested, gave her meds, and waited. Then she had some more and we gave her rescue meds and she rested. When she had more after that, we decided she must still be sick. So after 3 hours of waiting and getting a full work up at the urgent care as an out-of-towner, we determined she still had one infected ear, and luckily the good doctor offered to give her a shot of antibiotics to kill it faster. Unfortunately it wasn’t fast enough. 

We got her to drink some water, take some tylenol and she rested/slept for six hours. But at midnight, she started having her usual pairs of seizures, back to back and then asleep. But when those pairs start to get closer together and she can’t fall asleep it gets more scary. She was also showing some signs of other distress. So when she didn’t respond to the heavy hitter rescue med – in the valum family — (we hate using it), we knew we had to go to the ER.

Rest of the story is not interesting except that it took them two hours to stabilize her. It was horrific. Our worst episode ever. And we felt helpless and so scared. But it’s over and she is better. 

We meet with the doctor next week and we will share what the plans might be after that. Until then, we really can’t say what’s next for us. The most important thing is Reese stays healthy and that nothing stresses her immune system. That is the best way for her to stay seizure free. 

Hope this helps everyone.  

Hair Is Supposed to Stay on Your Head

And then came the crying. Worst part about an overnight #EEG is washing/combing the cement out. Takes days. #epilepsywarrior #day 4

Better With Each Bite

SALMON. It’s what’s for dinner. Because it’s brain food! And it’s delish! Girl can eat at least 6oz. #yum #fish #feelingbetterwitheachbite #epilepsywarrior #achangefromchicken