Thank you to everyone for your hugs and love over the past few days. They’re both needed and appreciated.
We’ve been watching V like a hawk the past few days.
Super vigilant and on high alert. The ultimate helicopter parents.
It’s hard not to be.
Luckily though, it seems like the after effects from V’s seizure are mild.
She was a bit unsteady on her feet Sunday morning, but that has corrected itself, and we haven’t seen any other physical issues.
There doesn’t seem to be any behavioral issues from the seizure, either (everyone cheer!!).
It looks like this seziure went after her language center instead.
She’s had seizures in the past where she lost words, and when as a toddler you only have a few words to begin with, it meant she lost her ability to speak.
Thankfully, this isn’t the case this time.
But it’s the weird things that you take for granted that hits you like a punch in the gut when you least expect it.
Last night V wanted to dress up as a kitty cat. She loves to dress up as a cat with a nose and whiskers painted on her face using my eyeliner. A couple of weeks ago, I ordered a cat costume for her off Etsy. Just a little set of ears and a tail. And so last night when she wanted to dress up, I mentioned that we’d have to wait for the costume to come in the mail.
“Mail?” she said. “You mean like press send?”
“No sweetie,” I replied. “Not email. Mail. It will come to the mailbox and then we can go get it.”
“Mailbox?” she looked at me confused. “What’s mailbox?”
“You know… a mailbox… don’t you remember how we walk to the mailbox to get the mail?”
A memory. A word. Something simple, and really, without a lot of meaning. But *poof*, it was gone. She had no idea what I was talking about.
I saw it again this morning. She wanted to dress up in one of her play silks.
“Can you tie it around my elbow?”
I looked at her, “Where do you want me to tie it?”
She pointed at her shoulder “My elbow.”
I sat next to her and gently said, “That’s your shoulder, not your elbow. Where’s your elbow?”
She again pointed to her shoulder.
We proceeded to do a body inventory. Body parts she’s known and been able to name for years.
She knew where her knee was, but the word ankle was also missing for her again.
Silly simple words. Word I know will come back. Words I know we can easily correct and reteach her if we need to.
But, oh those words.
Their absence says so much.
I’m one of those people who can cry at the drop at the hat, sometimes. If I’m frustrated? Waterworks. Angry? Yup, I’ll tear up. Watch that commercial on TV with the cute kid? Well, you get the idea.
I’m having one of those overly emotional days, today.
Vista had a bad seizure last night. It took her a long time to come out of it, which is very unusual for her. Usually her seizures are short, and she’s fine right after them.
This one lasted longer and when we were finally able to wake her up after it, she couldn’t tell us her name. She fell back asleep, which meant we had to continue to try to wake her up every little bit, trying to bring her out of the post seizure and make sure her cognitive functions returned.
Let me tell you… when you can’t wake up your kid, it’s scary. V’s notoriously hard to wake up at the best of times. But this? This was different. This was holding a ragdoll in my arms. And just when we thought she might open her eyes she was gone again.
When we finally started to get some response out of her and I was coaxing her to open her eyes, she told me she couldn’t. She was trying, but her eyes wouldn’t open. Gah!
It took almost an hour for her to fully return. That is a loooong 60 minutes of debating whether to bring her into to the ER, chatting with an on-call nurse, and repeating “Vista, sweetie…wake up and open your eyes for Mama” over and over.
This kid is seriously going to give me a heart attack.
She’s better this morning. A little off on her balance, but otherwise seems to be alright.
I’ll be calling her neurologist on Monday morning to see if they want to do some level checks for her meds, since she’s had a couple growth spurts over the past could months.
But the fact that this seizure was so different than her normal ones… doesn’t sit well with me.
It makes me nervous that they’ll want to talk brain surgery again. Which REALLY doesn’t sit well with me.
So while I’ve been doing the classic ‘worry about things you have no control over’ this morning I realize… wait… where the hell’s my cat?
I haven’t seen him since yesterday.
He always comes home. Several times a day. To eat, and get pets, and shed all over my floors.
But, no sign of him.
I couldn’t be Bil’s annoying useless cat that goes missing. Noooo…it has to be my cat who I love and adore.
So I quit this weekend. And in lieu of crying I’m eating ice cream, and carbs, and other random junk. Please send wine and margaritas to wash it all down.
Friends and family who live out of town have been asking for a Vista update. So if you’re not in the mood for medical drivel skip over here where Kim is asking the craziest place you ever had a quickie. Oh come on. You know you want to share…
Even though I haven’t been blogging and tweeting much about it, Vista has continued to seizure despite the meds she’s on. She did really well on her first med, Clobazam, until a growth spurt rendered it useless. She was on the highest dose do the decision was made to add a second drug, Trileptal.
After the Neuro prescribed the second med, they also decided they wanted to see her in office and reassess. They’re very concerned at the amount of regression and behavior changes we’re seeing in her after her seizures. So, getting her seizures under control has become priority #1 in her medical regime.
At that visit we also got V’s latest diagnosis: Symptomatic Partial Epilepsy
Not a huge shock, since she’s been seizuirning for 3yrs. What it means is she’ll have to go 2yrs seizure free on meds before they’ll try to wean her off of them to see if she might have grown out of the seizures at some point.
Unfortunately we haven’t made it two weeks yet.
V hasn’t done really well on the Trileptal. The higher doses make her really irritable and the lower doses still aren’t controlling the seizures.
So, they’ve now added in a third med called Valproic Acid. She’s only been on it a few days, so only time will tell how this one works. We’re keeping our fingers crossed that third time is a charm.
The down side about the Valproic Acid is that she’ll need her levels checked. This means the blood tests. But really, if it controls the seizures, it’s worth a few needle sticks.
On the upside, since her last growth spurt she seems to have mostly outgrown her dairy allergy. Yay! Pizza and ice cream for everyone! We still have to watch how much dairy she eats (too much will upset her tummy a bit), but all the severe symptoms are gone.
All and all, she’s doing not too bad. She’s growing like a weed (my 3yr old is wearing size 6/7 shirts!), loving summer sun, and content knowing she’s an adored princess.
Sometimes I feel like, as a mom, I have these wonderful, magical powers.
Have a boo-boo? One kiss from my lips makes it feel all better.
Crying over spilt milk? One hug with my arms wrapped around you makes it feel all better.
Scratches, scrapes, hurt feelings, and insecurities are no match for my mommy powers.
But right now we’re battling sometime that can’t be fixed.
Would it be ironic to say that it has a mind of it’s own?
Because some days it really feels that way.
We finally got her EEG booked for March 9th. Yeah, a month away. This will be her third and that’s 3 too many. Believe it or not, out of all the tests she’s had in her life, these EEG’s are the worst, because it involves me holding her down while she screams and cries and screams as they attach the electrodes to her head. After getting her all worked up, I have to calm her down enough to fall asleep. And after sleeping for 10 minutes or less, I get to wake her up. I end up going home after them and crying as Vista clings to Bil wanting nothing to do with me. And I can’t blame her. I wouldn’t like me much either after all that.
But what’s the most frustrating is that I know the test will come back normal. Just like the last two. So I have to put her through all that for nothing. Or rather, so we can see the neurologists so they can tell us “Yep, everything still looks OK, other than her normal brain malformations. We don’t know why she’s seizuring or why she regressed so much after her last seizure.”
Did I mention being a mom also makes you a psychic?
I had a long talk with Vista’s Speech and Language Pathologist yesterday as she put V through her paces. She’s confirmed for me that it’s not uncommon for people to regress after every seizure. It’s just something that is. And will be forever. As in, when she’s an adult and has a seizure, she will experience loss of skills.
I watched, as we talked, as Vista struggled with a toy that a month ago had been a breeze for her to play with it. A toy whose ins and outs she had mastered. Now, it’s like she’s seeing it for the first time.
It makes me sad for her. It makes me frustrated for her. It makes me angry for her.
And Vista is all of those things right now as she struggles to make herself understood. She went from being a toddler who was well on her way to being at a normal speech level. She was talking in sentences. She was easy and clear to understand.
Now our days are filled with “I’m sorry, sweetie, I don’t know what you’re saying” and she screams the same garbled words at me over and over hoping that volume will make me get what she is trying so hard to communicate. Words that only weeks ago, I understood perfectly.
How do you explain to a two year old that half of what she’s trying to say is now reduced to babble sounds? You can’t. How do you explain that even though she was able to open that door a few weeks ago, it’s going to take some time for her to learn how to do that again?
So the next couple of months will be spent trying to return her words and motor skills to her. And trying to manage the frustration and anger, both hers and ours.
I’m hoping one day we’ll learn this dance. One step forward, two steps back, side shuffle, side shuffle. This stumbling along, trying to figure out what comes next is making my brain and heart hurt.