I realize that I have yet to really tell you how JillyBean is doing. So I suppose I should do that, no?
(No pictures today…I have a million and one things going on and just didn’t have the brain power to deal with uploading…sorry!)
Well, basically, the MRI did show some white matter. Just a tiny bit, and in a location that is totally consistent with oxygen deprivation. The part of her brain that coordinates movement.
So, nothing surprising or new there.
It doesn’t affect her personality or “smarts” or anything cognitively. But again, we knew that already.
The FANTASTIC news is that there was no tumor, no brain bleed, swelling or anything extra scary and life threatening. I couldn’t help but think of Cora and wonder if somehow I was never going to bring my baby home again. (Love you Jess!)
So the nice thing is that we now know for sure what is going on in her little head and we know that it’s as un-scary as brain damage can be.
The seizure is caused by your brain going haywire and firing like crazy…and the part of her brain that misfired just hadn’t really been used yet…which is why 3 weeks shy of her first birthday is when she had her first seizure. Sometimes kids don’t have their first seizure until their teen years…another time of major development and growth. AND often, they outgrow it by the time they are 3-4. Obviously that’s what we are praying for at this point. (Sometimes they stop seizing at 3-4 and start again as teens!)
There was one small area in the EEG that showed abnormality…which means that we have a better than 80% chance that she will seize again.
IF she does, well, then she would be diagnosed with epilepsy. My heart caught in my throat. But epilepsy simply means “someone who has more than one unprovoked seizure”. That’s it.
Much like Cerebral Palsy where my mind’s eye immediately goes to the severe cases we see on TV and in movies, when you look at the actual definition…well, it’s not nearly as bad. Well, as non-bad as a baby who can seize is, I suppose.
And seizures come in all forms. It’s not always the crazy full body ones you think of from media. I’ll do a whole post on that someday.
Anyway, what does that mean for US?
More work for mama.
She is on daily anti-seizure medication. BUT, the lowest dosage possible. For now.
In the meantime, I have to watch her like a HAWK.
We had to move her crib into our room…
we have to keep an eye on a video monitor (that we randomly already had!) during naps…
and I can’t leave her playing or unsupervised for more than a few minutes at a time.
If she has another full blown seizure again, I have to call 911 so that they can stop it with IV meds. (When she is 2, there is a med I can give her myself but she’s too little yet).
But almost the more important thing is that she may/will appear to begin seizing…and then stop.
What this means is that the meds are working…but not fully.
In this case, I call the Neurologist who then increases her dosage and we go from there.
And so on and so forth.
Of course I’m worried about my girl, but honestly my biggest emotion right now is…
OVERWHELMED.
Understatement of the decade.
It just seems crazy to have to keep such a close eye on her…when I have two others…and lunches and dinners and dirty toilets and laundry…
and having to call 911 again???
Oy vey.
That’s a lot for MY brain to process.
What if I miss one of these start/stop seizures???
What if we don’t hear her in the middle of the night (she didn’t make any noise during her seizure the other day!)???
The doctor simply replied:
“All you can do is the best you can do. And you know that you’ll be doing your absolute best for her.”
True story.
And God is here too.
Watching us. Intertwined in our lives wholly. Even when I want to scream. Even when I am tempted to ask WHY…but it is what it is.
And I know that for as deeply as I love my babies…God loves them MORE. It’s hard for me to fathom that.
And this is our new normal.
Never a dull moment in our family.
But other than that, she is Jilly. Just like she was last week before any of this happened. You’d never know she threw us for a loop.
Which I think is really important to remember.
She is not sick. She is not dying. She is well…FINE.
You know?
And I’d be a jerk if I wasn’t OVERWHELMINGLY thankful for that!
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<3 <3 your doctor gave you such great advice.
we are all praying for your family :]
.-= Gussy´s last blog ..a little work confession… =-.
Continued prayers for you and your family.
can’t even imagine twins… let alone twins with special circumstances. just like you said, it’s your new normal, and in time you’ll adjust. i love your attitude and focus. your kids are pretty blessed to have an involved mommy who’s watching carefully. and so thankful that you’re already a SAHM.
.-= purejoy´s last blog ..wish it was wordless wednesday =-.
Prayers and hugs…………
Wow. Wow. That was a whole lot for you to learn about your sweet girl in the course of a few days. Overwhelmed is probably just beginning to describe how you feel. So, can I watch your kids for you for a while, just so you don’t have to feel like every minute of every hour is spent in suspense?
I love that you lay it out there and tell it like it is. Yesterday when I came over just got to Love on Jilly…it was so good to see her be her. She is so beautiful and loving. She’s your cuddler and you’re lucky! Prayers and hugs as always!
Glad to hear things are so much better than they could be and that Jill is herself again. Praying for extra strength when you need it and that you get the rest you need to take care of this family of yours. It is amazing to think that God loves our kids so much more than we do, but I’m sure glad about that. He loves you so much more, too, and is right there with you. love and hugs to you all
.-= Robbin´s last blog ..Outside my doorSpring has sprung =-.
love you friend! make sure you get some downtime. get help if you can so you can catch your breath. xxooo
Just a lurker here. Oh Jeanette, my heart goes out to you and your family – how completely overwhelming. You are truly an inspiration and little Jilly is so lucky that you as her mommy!
Oh, that baby girl is MINE the next time I see her at church. That settles it. I will kick out a nursery worker, take off my shoes in exchange for those ugly little socks we have to wear in there, and I will grab her and love on her. Just be warned.
it is amazing what you can do in HIS strength!! My heart is with you… My story is finally posted on my blog today .. I hope you find time to come and read… at the very least maybe my overwhelming story will help you feel less alone. When I tell, read or write my own story I still don’t know how I am still breathing and living outside the loonie bin and not in it!! =) (ok that probably was not encouraging!)
My prayers are with you! my heart is with you! HUGS!!