Category Archives: Living with epilepsy

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.

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

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)

All of My Love

The Led is in my head… #All of my love, all of my love, oh all of my love to you, now…” #LedZeppelin #classicrockrules #lyrics

July 6 Update

Settling into our own room means snuggling with less cords, a place for Dad to stretch out and hopefully more rest. #epilepsywarrior

Fourth of July is Supposed to be Fun

So excited to be on this trip. To get to be out of our house. To let Davis run wild and allow Reese to explore new things. To be spoiled by my parents who are thrilled at sharing all they love with us. To do it up on the Fourth like we did when we were kids. To just be normal.

Plus, I know I am trying not to take it all for granted that only 35 days ago we had the scariest day of our lives. You ask how she is and of course the answer is great. Anything is better than the worst nightmares we’ve had. I have been so optimistic because it’s really the only option in my book. I wouldn’t know how else to live.

And then it’s like you have a few good weeks and you forget the fear. It’s nice to forget but it always hurts more because you feel like an idiot for letting down your guard. You tell yourself “you knew better!” And you sigh. And maybe you cry.

I’m holding on to a sliver of that former full moon of optimism right now, while I hold my sweet exhausted girl.

It’s easier to say it here than to your faces, all your amazing, beautiful faces who love us so. She had a seizure after we got unpacked at my folks and we totally didn’t see it coming. Yes she has an ear infection. But she had been on antibiotics for 48 hrs and normally it’s the first symptom. So we waited and when she seemed to be stable we figured we got past it. I was really thinking this was the sign we needed that surgery may have been the cure. An ear infection with no seizure would have been proof. We still need to give it time. It has to be the answer.

She slept and she went the next 2 days all normal. The pictures are proof of her good mood and feeling so well. But this morning we’ve had another hit and I don’t think we can ignore it now.

So we are going to keep hoping it’s all part of a treatable ear infection. Seems her antibiotics aren’t doing the trick. So we’ve upped the ante and I am adding oils to the treatment because I have to believe it can only help at this point.

Needless to say, we won’t have that easy-going feeling for a while. We are back on guard. And just when I thought good change was coming, we may have to put that on hold if we are back to where we started. No telling just yet. As always your support helps us through every day.

She will let us know when she is better. Right now we are just focused on getting to Monday when we can see the doctors.

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