a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Wednesday, January 30, 2013

Neuro Follow-up

The short and sweet version... here it is.

Oia's EEG this month did not indicate a change in her brain activity. All EEG's to date have show the same constant and frequent "spikes" in activity located in the left frontal portion of Oia's brain. This is the very place of Oia's brain malformation, the cleft/hole, her Schizencephaly. Activity is most aggressive while our girl is at rest and during sleep but these spikes and irregular firings happen around the clock. In a nutshell, it's an utter miracle that two, just two, seizures have broke through in the last five years when literally, her brain tries to have one all day long.

But, that's two too many. So now, the anti-seizure med Trileptal is a part of our morning and evening routine. She hates it, the taste is horrid, but it's nothing an M&M afterward can't handle. So far, so good. The only side effect that seems obvious is potentially an increase in appetite. Then again, maybe she's experiencing a current growth spurt. Either way, big appetites for a tiny, very busy girl is a good thing. From here on out, we'll keep rollin' on with the Trileptal and cross our fingers that this med is the answer to a seizure-free life.

Saturday, January 19, 2013

Another Seizure and EEG

It's been about a month now (the week before Christmas) since Oia had her first seizure. Per the guidance of the neurology team, we began giving Oia the anti-seizure med, Trileptal, at that time. Within the first week of administering the medicine, we stopped it. The week on the medicine was crazy, for the lack of better description. Oia was more inattentive than usual and extremely busy. It was an exhausting and frustrating week. She was literally all over the place and lacked complete focus. The very behavior we are trying to calm was intensified during the week on Trileptal. Also that week and even prior to it, we were dealing with a mystery rash as well that had no cease in itch despite the topical ointments and oral Benedryl we were giving her around the clock. Perhaps the meds used to treat the rash were having adverse side effects with the seizure med but we just said enough is enough. We carried on seizure med-free from there, willing to take our chances.

An EEG was scheduled for last Thursday, the 17th. It was to be a sleep-deprived read so we were instructed to wake the Miss at 4am for her 8am appointment. Since this momma bear doesn't do mornings well, I was a little late and woke her around 4:30am instead. I gently picked her up and carried her groggy self downstairs where I had planned for us to snuggle on the couch, by the fire, and share an early breakfast of donuts and milk. But in less than 5 minutes of us being out of bed, Oia began seizing.

I quickly carried her back upstairs and woke Rob. I held her, comforted her, rocked her, and waited. Rob recorded the bulk of her seizure to share with our neurologist. Two minutes felt like 30. No need for diastat this time. She fell asleep immediately after it passed, waking on and off for the next hour or so. I watched her like a hawk.

We made it to our 8am appointment. And as we suspected, Oia screamed bloody murder for nearly all of the EEG process. Rob had to lie over her top half and I over her legs to keep her down and somewhat still for the technician to adhere the wires to her head. Her screams lulled to just a cry for the 20 minutes it took to do the read, all of which Rob and I still had to hold her down for. We make a good team but it's a wonder she still loves us. I know she doesn't always understand why we must do the things we do, to her and for her.

Our neurology appointment this Wednesday, the 23rd, will be important. I'm anxious to gain insight on what's happening inside that sweet head of hers now. What's changed? Why the seizures now? What must we do from here? For now, we have resumed the Trileptal for take 2. With no mystery rash and other meds on board, we are hoping that we will not experience a repeat of the adverse side effects this time (increase in hyper-activity) and that this med will be our ticket in keeping these nasty seizures far, far away. For good. One can only hope.

Monday, January 14, 2013

Saturday, January 5, 2013

2012 Recap

Well, there goes another year. It's a good thing. A place to start fresh is always nice. 2012 was a whirlwind for me. I felt as though I wandered around without my head a lot. I'm feeling like 2013 may be more for me. They say green is the color of 2013 so things are already headed in the right direction. Allow me a slight recap of our year... all of the good, the bad, and the ugly that I can possibly remember.

~Oia underwent dental surgery. Still feelin' guilty about that one.

~I struggled with a short but powerful bout of postpartum depression. That crap is no joke. It seemed to come early in the new year and lingered until almost summer. May I never, ever experience that again.

~We ventured with breath held nearly 800 miles to The Kaufman Children's Center in West Bloomfield, MI in hopes of a tiny miracle over our apraxic world. We got one. Nancy Kaufman gave it to us. Our lives not perfect, but forever changed. Oia's expressive language since then has exploded. There lies a big ol' black asterick next to this 2012 happening as this was by far the year's highlight for me.

~Oia got new glasses.

~I got a continued lesson on the fragility of life as I've witnessed my best friend battle her biggest dragon yet. Diagnosis' don't discriminate and breast cancer is no exception. This dragon, though, chose to take on an individual who is far stronger and faithful than any woman I know. The dragon has definitely left it's mark, but all that remains standing now is my Suzanne. And frankly, that's all that matters.

~Oia went to her first, non-therapeutic camp. She attended with the help of her shadow were she was exposed to all things turtle for 5 days. Not sure what she got from the experience but I'm glad we worked it out and she tried it.

~We vacationed at Myrtle Beach with one of our most favorite families ever, the Hampton's. The sand, sun, and company was much needed.

~Our baby Esme turned one. Then she learned to walk, all on her own and just like that. And as if that's not enough, the kid started talking. And stating her ABC's to h already, then skips a few to m,n,o,p. She even counts to 10. Seriously, she is just 17 months old. Who is teaching her this stuff?

~The biggest star of the show turned 5. What an amazing girl. Full of life. Full of unconditional love. Simple yet so complex. And FIVE!

~Rob and I celebrated our 8th year of marriage in August (we've been a couple for nearly 15 years!) Hard to believe.

~Heard the words "...wean her out of these braces" this year, which was a delightful shock.

~Oia jumps now, from and off of things. Sometimes she hops from room to room simply because she can. But usually, she just runs. I still remind myself of a time when we wondered if she would ever learn to walk without support. Boy, would she ever.

~Oia started her third and last year of Preschool.

~I tucked away a good bit of pride this fall and hired an attendant. Felt like such an unnatural thing to do as a mother but welcome to the wonderful world of special needs parenting. It's intense. The second item on this list could have possibly been avoided if only I had done this sooner. Oia demands constant one-on-one attention and she deserves it. But so does Esme. Life now with help is nice and just a handful of respite hours a week makes all the difference in the world.

~We potty trained Oia. She still wears a Pull-up at night but who cares? This girl is in undies all of her waking hours and she is equally as proud of herself as we are of her. She is even demanding privacy in the bathroom by choosing to lock us out. She's on her own.

~We pointed our toes towards the big dream of building a one-level home. Prayers for the quick sell of this house would be lovely. It's our only anchor in moving forward.

~Oia just had her first seizure last month. And some funky, mystery, month long rash that had the girl itching out of her skin. Both of which are not welcome back. Lord, it was awful.

~Esme ended the year with a double ear infection and Bronchitis. I, with just Bronchitis.

~And, Oia ended the year with her first loose tooth. Not sure I'm ready for the baby to start falling out yet...

I suppose that's the bulk of it. Not the best of years, that 2012, but certainly not the worst. But forward and onward to 2013. So much is waiting for us. So much to claim as ours. Day by day though... and one thing at a time, while giving thanks all along the way.