Begrudging Updates

I am so not in the mood to write an update post. But considering I haven’t been in the mood for a good…hm, MONTH now, I suppose I’d better push through it. I’ve been in this very weird place where I am mourning the lack of time and ability to keep this blog current and active, but I also avoid writing in it. I think, as far as Oliver goes, I’m just mad that I have something that needs updating. I’m tired of the fact that so many people are anxious to hear how he’s been, because that means there’s something extraordinary about him. And how I long for ordinary…

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The injections ended October 22 and we haven’t seen any sign of the spasms coming back! This is great news. Except that there is no such thing as inherently great news where a brain disorder is concerned. Because once the doctor looked at his EEG, he said, “Technically, the anomaly is still there. But if you’re not seeing the spasms, we’re not going to treat based on an EEG result.” They think that it’s likely that he’s always had this anomaly since day one and that the spasms finally began and now he’s back to where he was originally. Not normal, never normal, but not in immediate danger. We’ve upped his regular seizure meds to account for his size (we’re wearing 2-3T at 8 months) and to attempt to proactively fight them from returning now that the injections have ended. But we are approaching the tipping point where he’s at his maximum dosage. This opens the door to a whole new set of decisions about how to proceed when adding a third medication only helps kick about an extra 1-3% of seizure activity. But as I say now, “Not today’s worry. Not today’s thinking.” The biggest frustration right now is that his immune system will not be back up to peak for another three months at least so he has to continue his quarantine until the end of flu season. The logistics of trying to go anywhere is insane. Just today, both of my parents needed help with moving and getting their new store ready, and a cousin wanted Margot to come to a birthday party. And there’s another birthday party later tonight. Well, unless we can find a babysitter with no kids at home, we’re not BOTH going somewhere at all. And today there is no babysitter for the morning, so Alan goes to help move and I stay home with the kiddos. But I’ve promised Margot this birthday party of her cousin’s, so I take them both, managing to convince my uncle to take Oliver back up the hill to his house and watch football so that Margot can stay at the party without Oliver getting too close to the kids. Once Alan gets home, I may go back out to help my mom, but the party tonight is out because we can’t take him to big social events, due to both germs and noise level (high stimulation can trigger seizures). One of us has had to stay home with him every week during church and we cannot go out at all unless we find a place for the kids with no other kids or two separate sitters so as to keep Oliver alone.

We’ve been extremely blessed to have a sitter we love for Ollie through the majority of his quarantine. She is a certified teacher who is stuck at home on disability and needs the company and the challenge. Oliver is pretty good at both. She not only babysits him, she PUSHES him. He does therapy every day, she’s always on the lookout for ways to make him interact more, relax more and learn a new skill. I’m thrilled to say that in the time he’s been there, he’s gone from clenched fists and refusing to let anything touch his arms or hands (even the outside) to open, relaxed hands most of the time. He’s touching things willingly with his fingertips and tolerating so much more touch from us. He’s even discovered that he can suck on his fingers when he opens them up! I have forgotten what big, manly hands he has. Margot has tiny hands with long fingers like mine. Ollie’s palms are wide and flat and when they’re open, he sort of reminds me of a great dane puppy, whose huge paws are a giveaway for the size he’ll one day be.

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We’re shopping for a new carseat for him as he’s at the weight limit for his infant chair now (22 lbs or more). We’re grateful that it seems that we can get away with a normal convertible carseat as long as it is a certain deep, narrow shape and has enough recline. This saves us from one more expensive specialty product. Because now that he can’t use the infant seat, our stroller is useless for him as he doesn’t have the head or body control to sit upright in it and he’s right on the verge of being too heavy to carry around. So this week, we’re beginning talks with his therapists about what equipment he’ll need to keep him safe, supported and included in our daily lives. I don’t know if that means a special stroller, a wheelchair or a wagon that can pull his little foam chair, but it’s all a little sooner than we had thought. No one thinks that they’ll be talking wheelchairs for their 8-month-old. But things could be much worse.

I’m so thrilled that Ollie is so visibly happy. I can get huge grins out of him at almost any time. He laughs on a semi-normal basis. He gets excited when he does something right. He leans in to nuzzle his sister when she’s nearby in as close a thing to a hug as one could get without arm control. And she is turning into such an amazing caretaker. She is still unaware of his specific situation, but she knows that he needs medicine twice a day or he’ll get sick, that he visits the doctor and hospital regularly and that certain toys and noises are harmful to him. And she’s fine with all of that. She is head over heels in love with her little brother. She’ll sing him to sleep, sit and talk to him when we’ve left him alone to get ourselves ready, try to make him laugh, cheer for him when he does any little thing, and generally comment on what a super cute brother she has and how awesome of a big sister she is. She is correct on both counts.

We’re doing ok, though we have given up on such silly luxuries as grocery shopping, cooking meals, cleaning house and socializing. It turns out, these are not actually requirements for survival. Who knew? Here’s hoping Margot will not be in therapy years from now talking about the over-consumption of peanut butter and jelly and ever-present layers of clutter in her house growing up. As long as she remembers that her very flawed parents adored her, I’m good.

So please forgive the silence. It is still my dream to be able to post regularly and have new inspiring content all the time. It just turns out that this is not at all practical when you’re treading water, trying to stay afloat. And yet we still put that pressure on ourselves, don’t we?

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  • Debbie Lukens KingNovember 9, 2014 - 11:05 pm

    Always in awe of your stories about Oliver and from a distance it looks like you are doing well.
    Never an expectation of an Oliver story, but will forever be thinking of you and your family.ReplyCancel

  • Lyn Gibbs ShepherdNovember 10, 2014 - 1:34 am

    Your mom thinks you did all the right things today. We all survive each day with prayer and hugs. We will just keep going every day in faith that there will always be just enough to make it. You inspire me daily.ReplyCancel

  • Lindsey Coy ShepherdNovember 10, 2014 - 2:25 am

    Don’t worry about the PB&J. Your brother still eats them on a fairly regular basis (including today) and he is doing okay. If you need a night out sometime, we are here.ReplyCancel

  • Cheryl McGhee RogersNovember 10, 2014 - 6:48 am

    Ken and I are both in awe of you and the challenges you are addressing daily. We love you dearly and would love to come babysit sometime during the holidays. We ‘ll be in touch!!ReplyCancel

  • Emilie DeVasherNovember 10, 2014 - 4:46 pm

    Please never feel like you have to update us. We do love to know how things are going (even if you’re treading water), especially as it gives us specific things to pray for, but your wellbeing and your family’s comes first. If you only posted every six months, we would all still be praying for you. Thank you for the time and mental energy you took to write this update. I’m so glad to hear how well Margot is handling everything. It gets hard for an older sibling, but it sounds like she’s weathering it all with grace and enthusiasm. Hugs to you.ReplyCancel

  • Debra Kruger MilneNovember 11, 2014 - 6:12 am

    I enjoy your posts–both long and short (especially those M conversations…)ReplyCancel

  • AndreaDecember 5, 2014 - 2:06 pm

    You are both such wonderful parents, from the little I’ve read on your blog. What courage and patience you have. And that sweet baby boy, he is blessed to be with you as you are to him. May God bless your family and may this trial and tribulation pass and only blue skies ahead.ReplyCancel

  • Michelle R.January 26, 2015 - 1:52 pm

    Hi, I found your website a little while back when thepaintedhouse Angela posted about it. I read about your son and just wanted to say I hope he and you are doing well. Thoughts are with you x:)ReplyCancel

    • AlysaApril 1, 2015 - 1:16 pm

      Thank you, Michelle! I’m so sorry I’m just getting back to your comment. I haven’t blogged in months (obviously) and just found your sweet note. Please make sure you like the West of Grey Facebook page. I’m MUCH better about keeping updates going there, though i hope to get back to blogging more regularly, as well. Blessings! -AlysaReplyCancel

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