Here We Are Again

It’s 11:30am and I just watched Vista crawl up on the couch in the living room and fall asleep.  I waited a few minutes then went over to her, gently picked her up and carried her to her bed and tucked her in.  She barely stirred as I walked with her down the hallway.

And now we wait for the chorus of “Oh man, your three year old naps?!?  You are so lucky!!”

But right now, I’m not feeling really lucky.

Because for us, that nap doesn’t mean she’s tired, that nap means her seizure meds aren’t working.

She had two seizures over the long weekend.  One on Sunday while she was out with her respite worker, Dorothy and her family.  Then, yesterday, we were over at her Dorothy’s house (as over the past year they’ve become very good friends of ours), and just before dinner she came and sat down next to us and had another seizure.

She seems to know when she’s going to have them as she always manages to be sitting down when she has one.  On Saturday, she crawled onto Dorothy’s lap, told her that her head hurt, then had her seizure.  I don’t know what her warning is… I suppose I won’t know until she’s older and understands enough that we can ask her to describe it.  But it does help calm the fear that one day she’ll have one while walking down a flight of stairs or something.

So here we are at today.  She slept for 14 hours last night after her seizure.  Which is how we confirm if it was a significant seizure or not.  Minor seizures don’t affect her.  But when she sleeps from 7pm to 9am (her normal sleep time is 9pm – 5am)…yeah, it tells me we have a problem.

And now she’s sleeping again after only being up for two hours.  Which means I probably missed a seizure while she was outside playing.  That’s three in three days.  And that?  Is not a good thing.

So here we are again.  Waiting for a call back from her neurologist and probably playing the medication game.

Part of me wants to sob in frustration.

Part of me is worried about the effects these seizures might have on her speech and motor skills again.

Part of me wants that magic cure, dammit. Something we can do so she’s not having to go through this anymore.

But mostly right now, I just want her neurologist to call back so I can find out what then next steps are to getting her well again.

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36 Responses to Here We Are Again

  • This is so tough. I know that it is frustrating. It may take many months to get the dosing right on her meds. Sometimes it may take two different meds together to stop the seizures. I hope you all are able to figure out soon.

    Jenn Reply:

    @Kim @ Beautiful Wreck,
    Yes, I figured it would be like that for V, because she does metabolize meds so quickly (took us a year to get a combination of reflux meds that really worked for her).
    But I was kinda hoping, because the drugs looked like they were working so well, that maybe this would be different.
    That and I was really hoping to avoid drugs where we’d need to draw blood to test her levels. I guess we’ll see what the neuro comes back with.

  • Lisa says:

    Oh, Jenn, I wish I could hug you right now. Hang in there momma. I’ll be thinking about you guys and hoping the meds issue gets straightened out quickly and that Vista is back to her old self soon.
    .-= Lisa´s last blog ..It’s Hot Out There =-.

    Jenn Reply:

    @Lisa,

    Thanks Lisa. I always appreciate your support. You’re awesome.

  • oh mama… love on that beautiful girl of yours. the waiting game is so fucking frustrating and hard, especially when all you want are answers… and those answers are for your child who you would gladly give your life for and say “let me deal with this instead of her/him.”

    i hope the neurologist calls.

    love you dearly.

    Jenn Reply:

    @nic @mybottlesup,

    I love you for totally getting where I’m coming from. And you totally made me do the big ugly sobbing cry now. lol… thanks a lot. *sniff* lol.

    nic @mybottlesup Reply:

    @Jenn, well shit, i didn’t mean to do that… that being said, you’ve heard me bitch and complain over the phone about how desperately we wanted, we NEEDED an answer with jackson.

    i hear you love. loud and clear… even if it’s the big ugly sobbing cry.

  • Mandi Bone says:

    Hugs to you both. I hope they have called by now and you are on the right track with new meds.
    .-= Mandi Bone´s last blog ..Here we come Mickey =-.

    Jenn Reply:

    @Mandi Bone,

    Ha! You’ve mistaken us for the US health care system. I’ll be lucky to get a call back by the end of the day. I’m hoping to hear something by tomorrow.

  • AmazingGreis says:

    (((hugs))) hope ya’ll are able to find a fix soon!
    .-= AmazingGreis´s last blog ..Sometimes random is good… =-.

  • Laura says:

    Oh mama, when it comes to your babies I know how hard it is to wait around for those damn Drs to call you. Praying for you that they do and they can figure something out right away. Not only for your mentally but for poor vista. She deserved to be able to be alittle one while she can. She’s so beautiful and energetic. Hugs to you and her.

  • Sara says:

    HUGS! for you and your beautiful daughter.

  • Jen says:

    I really feel for you, and do hope you get a call back soon. We’ve been through some similar things in the past with Hannah, and it’s frustrating on so many levels, not least because we only want to make our babies feel better so they can enjoy their time as little girls. Will be thinking of you all, and hope Vista takes a positive turn soon.

  • Jen I want to give you a big hug. I can’t imagine how scary this all is. I have a few friends with children who have seizure issues, and it seems to be a constant problem to adjust the meds because they grow so quickly at this age.
    As for the doctor calling you back, it would take that long in the US too. I was just called today to say the meds to prevent the miscarriage (I had last week) were almost done. Sigh.
    .-= Jenni Williams´s last blog ..Meaning Well =-.

    Jenn Reply:

    @Jenni Williams,

    Thanks Jenni. At this point I’m just really thankful that we even have a direct line to our neurologist. Saves having to get into the GP and then have a referral over to neuro. And I’m glad we have a doc who’s willing to take me at my word and adjust her meds over the phone without us having to drive all the way into the city for it.

    I still cant get over how poorly you were treated during your miscarriage. No on deserves that when you’re already dealing with such an emotional burden. Hugs lady.

  • Heather says:

    Has he called yet? I hate the medication game. HATE HATE HATE.

    And I hate side effects and mother worry…

    But I sure do love these kids… xoxoxo

    I am thinking of you and hugging you both from afar.
    .-= Heather´s last blog ..Mom =-.

  • uthostage says:

    I wish I had something brilliant to say. Please know that you are in my thoughts. *hugs*
    .-= uthostage´s last blog ..Still Quiet =-.

  • Deidra23 says:

    I wish so badly i had a magic cure to give you! *hugs!*

  • Leigh-Anne says:

    Oh darlin… I have read abit of your updates on twitter… I know things are moving now… but man I wish there was something I could do to make this easier for you. If there IS… I’m only a phone call and a (short-ish) drive away.
    Love you!
    .-= Leigh-Anne´s last blog ..A Lesson =-.

    Jenn Reply:

    @Leigh-Anne,

    Thanks love. I may hit you up some wine. I could happily drink myself into oblivion one of these days. lol

  • Issa says:

    Oh Jenn, I’m so sorry. For all of you. Hope they get it figured out soon.

    I know nothing about nothing about nothing. Swears. (my disclaimer, ha) But I had a friend in HS who was an epileptic. Had been since she was an infant. A few minutes before a seizure, she had double vision, which made her feel dizzy and nauseous. It was her key, to knowing. Because it happened, each and every time.
    .-= Issa´s last blog ..Introducing =-.

    Jenn Reply:

    @Issa,

    I’ve had some of the docs tell me that as well. I suspect V might get something similar or an accompanying headache (when she woke up this aft she mentioned that her head hurt this morning but didn’t hurt anymore). I look forward to the day that she has a better awareness and communication and can tell us that is what’s going on.

  • Ashlee says:

    I wish I had magical powers. I’d so hit you both with it. Since I don’t, I will say how much I want nothing but relief and happiness for your family. You deserve giggles and fun. I hope answers and the right meds come soon so you get all that. Love to you!!!
    .-= Ashlee´s last blog ..Right now… =-.

  • MommyGeek says:

    oh, Jenn. I’m so sorry. :(

    That seriously blows.
    .-= MommyGeek´s last blog ..Summer {Wordless Wednesday} =-.

  • Pgoodness says:

    So sorry you all are going through this. Hope it gets figured out quickly.

  • butwhymommy says:

    Oh Jenn I am so sorry for both you and V. I hope you get some answers soon. In the meantime huge hugs.
    .-= butwhymommy´s last blog ..Perfect Day =-.

  • Sara says:

    Honey I am so sorry that you and Vista have to go through this! I really hope the neurologist calls back soon and works aggressively to find something that will help V! I am sending you love and hugs!
    .-= Sara´s last blog ..Wordless Wednesday =-.

  • jenn says:

    oh jenn. oh vista! i dont even have the words. just know i send hugs, prayers, strength, love and support daily!!
    .-= jenn´s last blog ..Take Me Out To The Ballgame =-.

  • Beth says:

    I say sob in frustration, sometimes it helps! Poor baby girl, I hope your family gets some answers, and solutions soon.

    And bless your heart for getting up at 5am!
    .-= Beth´s last blog ..Too Long To Tweet =-.

  • Becky says:

    I HATE that you’re still going through this. That there never seems to be an end or an answer. Just sending prayers and hugs your way.
    .-= Becky´s last blog ..Their Dad =-.

  • PsychMamma says:

    Much, much love, sweets. I know very well how much this sucks. As moms, we want to protect them at all costs. It’s a horrible feeling when we know they’re hurting and we can’t make it right. Then, add the fact that there is so much stress with playing the doctor & medication game (waiting, what are the side effects, waiting, will insurance cover, waiting…GAH!), and the gut wrenching worry about every worst-case scenario? Total. Suck.

    Wrapping my heart around you and sending you all the love, strength & peace I can. Just wish I was close enough to do it in person.

    xoxox
    .-= PsychMamma´s last blog ..Therapy for Sensory Processing Disorder & Pronounced Muscle Weakness =-.

  • Meredith says:

    You are an amazing mother with more strength and patience than i could ever dream of having. Vista is a lucky lucky girl to have a mother like you. i hope you get to the bottom of the recent issues sooner rather than later. Big hugs to both of you (and Bil too!).

  • ally says:

    I hope you get some answers for your baby girl soon. I hate this for you so badly.
    .-= ally´s last blog ..Ouch =-.

  • Chibi Jeebs says:

    Oh, Jenn. I’m so sorry you guys are still nailing this down. :(

    My sister started having seizures out of the blue at 13. Like Vista, she gets blinding headaches (usually after, though), and sleeps all day (she’s always had grand mal seizures unless she’s on antibiotics: the antibiotics lessen the efficacy of her anti-seizure meds that she just has petit mal seizures). She has told us that she can tell when hers are coming on because she gets a feeling she’s only ever been able to describe as an “out of body” experience – sound gets muffled and she feels like she’s observing herself from the back of the room.

    I’m sure each person experiences different things, but I thought I’d share. Much love to you all. xoxo
    .-= Chibi Jeebs´s last blog ..I’m either getting better, or worse: jury’s still out =-.

  • Pres. Kathy says:

    Sending you lots of love and praying for your family.
    .-= Pres. Kathy´s last blog ..The things Mothers Do… =-.

  • Laura says:

    I’m so sorry to read this. I’m hoping you find answers soon — you all are in my thoughts.

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