Let me preface this by saying this week has made me tired. It is Friday morning, and this week I have talked to the pediatrician on the phone twice, and emailed her four times. I am so tired of it, I can't help but think she is probably a bit tired of it, too. I feel like I talk about these things ad nauseum and I really wish I was writing about something else, anything else. But I I have too much grumbling around inside me and I have to put words to it, so I can put it away.
Tuesday we had a private speech therapy evaluation. It went really well. The therapist was really nice and is excited to start working with KayTar. She wants her twice a week, whereas through the state she only qualifies for once a month. She was able to get KayTar to close her lips around a straw! First time ever! The private OT and ST are going to work together to really work intensively on her oromotor skills, maybe one day we will be able to give up the bottle!
But, while we were in the one hour evaluation, a couple of odd things happened.
First, she noticed KayTar doing a strange blinking thing. Now, we've noticed it for about a week. It just looks like excessive blinking, and the blinks last longer than a typical blink, kind of like a squeeze...but we hadn't seen it enough to know if it was weird or not, if that even makes sense. Well, during the one hour we were there, it probably happened upwards of 20 times. And if it caused the ST to ask me about it, it is probably out of the ordinary.
Second, the ST noticed her tensing her shoulders, like a shrug, in a way that seemed involuntary. She kept count of the times it happened, because it struck her as odd. She also said when it happened she went a little pale. During the hour, it happened about five times. I've never seen KayTar do this one before. I'm assuming both of these things were triggered by stress. We've seen the blinking before, as I said, but to give you an idea I only saw it four times throughout the entire day outside of the evaluation. For it to happen upwards of 20 times within an hour is excessive. We were with a new therapist in a new room and stress is the only reason I can think of behind it.
I don't know what the hell is going on, really. All these things, even outside of the episodes, the drop attacks, the eye deviations, now the blinking and the shrugging...what is going on? Is it seizure? At this point, I really do feel like the Girl Who Cried Seizure. I just want to shut up about it. But even assuming none of it is seizure, what is it? Why is it happening? Is it muscle spasms brought on by stress? Motor tics? Does it even matter what it is? Is it doing any good to keep documenting it all? Or am I just making it harder on myself? Does it do any good to keep updating the pediatrician when these new things happen? Or am I just pestering her? They can only do so much, and they are probably doing most of it already.
Things are good. So good. She is thriving! I just want be able to focus on that and leave everything else behind. But I can't. Because several times a day when I'm looking at her beautiful face, her eyes dart away of their own accord and I can't not notice it. Or like yesterday, when I asked her for a high five she raised her hand and started moving it towards mine and her eyes danced away. She froze, her hand suspended, still halfway between us. Then her eyes came back a few seconds later and she completed the motion she had already begun. I can't not see something like that. Or when she noticed her brother wasn't here yesterday and she got upset her eyes began to blink and squeeze, blink and squeeze. I notice. I can't pretend I don't. Or when she goes into one of those horrid episodes and she just isn't there anymore, she just isn't fully herself for such a long period of time. I can't just let it go like it isn't happening. I want to know why it is happening, all of it.
I know others notice. They ask me about it, just like the therapist did. My parents and in-laws do the same. After I've noticed a quirk for a few days, I'll casually mention it to Josh, and he always reaffirms what I've noticed. But it FEELS like I'm the only one who notices, and I can't explain that feeling. I feel like if I just shut my eyes, it would go away. Or if I stopped talking about it, there would be nothing more that needed to be said. But that isn't the truth and I know it. It just feels so true right now, and all I want is to close my eyes for a little while...but I just can't take my eyes off this face.
Oh Kyla. I want you to get some answers already.
I'm sorry you've had a rough week. But don't you dare "shut up".
Maybe the pedi should read your blog too LOL.
Close your eyes Kyla. It won't make the scary stuff go away, but it might give you a chance to catch your breath. Sending you hugs in such a way that you have to close your eyes, even if for a minute.
Oh, please, no, no, no! Don't shut up about it. It's so important to document it all, for your sanity, for her health. It's all good. It's also helpful to read about how sometimes doctors don't know all of -- or any of -- the answers. And if there's someone who has a baby with symptoms like KayTar's, and she finds you, this will be ever so helpful for her.
Plus, we all want to hear about what's going on with that darling girl!
I don't think you are making it harder on yourself, I don't think you are pestering the pediatrician, and I don't know how you do it sometimes. I think your incredible power of observation is a blessing. KayTar (and all the Tars) are lucky to have you. I get sad reading a post like this because I can hear the stress in your words. And at the same time I admire how strong you are. You are an amazing person Kyla.
You're her mommy. You love her more than life itself. There is a burden that comes with this love and that is noticing each and every thing that doesn't seem normal. It's good that you notice these things, document them and share them in hopes of finding an answer. If nothing else, it's just one more example of the tremendous love you have for your daughter. As KayTar grows older, that is something she'll never have to doubt.
I find that talking about things always makes me feel better. If I just get things "out there", I am so much more calm than when they're stewing in my head. Don't stop asking questions, or noticing every little thing. And don't stop talking about them.
Ditto, don't shut up! The only way to get answers is to keep asking. I know it is frustrating for you.... Sending many hugs!!!
Oh boy... i watch too - i note all the little things - i feel like i am trying to solve a puzzle (a different puzzle to yours, but a puzzle nonetheless). keep documenting - maybe take a note of something you notice and then try to push it out of your head so it doesn't overwhelm you too much... (((hugs)))
(((((HUGS))))) Kyla, you are an amazing mother and woman. Kaytar is sooo lucky to have you as a mom. And like the others have said, don't shut up or anything of the sort. I am sure these clues that you keep getting will hopefully one day (very soon?) get the answers you have all been looking for. Take care Kyla!
Oh honey of course you notice. How could you look into that sweet little face and not notice? She's yours and you know her like you know yourself and you just want to know what the hell is going on. Don't shut up, not for her sake, not for yours, not ever.
Definitely keep going- what is she has a baby like her? She'll need to know all this. Is it possible she is having a sensory reaction? (My son is autistic, so I see sensory issues all day.) Were the lights in the room fluorescent? Fluorescent lights flicker at a speed that we usually don't notice but kids with sensory problems can see it- thus the blinking. Or it could be stress, my son does a lot quirky stuff to cope with stress.
I'm certainly not saying she could be autistic, because uh, she SO isn't! but she could have sensory issues separately...
Kyla, read what everyone here has written and know that there is never a need to shut up about it. You need to write, you need to document, you need to notice because it's part of the role that you play and one of the ways that you are helping her. We're here to listen.
I am SO sorry that you are feeling the weight of KayTar's issues so fully today. It is absolutely heartbreaking to watch your child go through these things and for no one to have a solid answer. We did it for 4 years before getting a diagnosis, and still most Docs can't agree that all of Bugga's issues were caused by the diagnosis. We know better now, and they are. That's beside the point.....
What I'm trying to say, is that I understand where you are coming from. And you're right, it is SO HARD. I wish there was an answer NOW for you.
I've been reading here long enough to know that you are absolutely THE BEST advocate for your daughter. No one could do a better job of searching for answers and seeking out help for her, than you have done and continue to do.
I also know that one of the things that helps me to deal.....is to have days like you're having today where you really feel it. You allow yourself to appreciate the suckiness of the situation. You let yourself be sad, maybe a little mad, and really ponder how difficult this really is. You have a great attitude all of the time. That's tough to maintain. You are more than allowed a day to just be.....*hmphf* about the whole thing once in awhile. Sometimes this path just SUCKS. It's okay to say IT SUCKS!!!!
I admire you Kyla. I was barely able to get myself out of bed and to work most days when I was your age. And here you are, with two beautiful, wonderful kids, and you and Josh are doing an incredible job of raising them both. I've never once witnessed you sticking your head in the sand over KayTar's issues. You've taken this whole thing on with courage and strength. You are a fantastic Mama Kyla. Remember to allow yourself down days. Your life is very different than you probably thought it would be. It takes a long time to come to terms with all of it. There are little losses all the time. But you and I both know that the gains that happen alongside them, are HUGE and fun and a reason to celebrate! I also admire your ability to always find positive even when you're feeling bad. And that face? Is the face of a little pumpkin who needs a KISS smack-dab on her forhead. *Mwah*
I'm going to dive in and get caught up on some reading here. My computer time has been limited severely by summertime, and I need to know about the drop attacks. That is a symptom of ACM1 that we know VERY well.
Dont stop documenting. Every little bit of information helps the professionals potentially see a pattern. Its a big puzzle, and every bit of info you have and can give the doctors is a piece that fits somewhere. Soon hopefully there will be enough pieces together so that they can start trying to work out WHAT the picture is, as opposed to randomly stabbing in thin air. Hang in there, I truely admire what you are doing, you seem to be a most awesome mother who cares very deeply for both of her children.
Please do keep writing. You're on a hard road. We're here for you.
You asked, "Does it even matter what it is?" I think you're right to err on the side of caution.
she has such a beautiful face. never look away. you are so good to her, and all your documentation, while tedious for you, is good, good, good. we all want answers for you soon. that kaytar has wedged her way into our hearts. as have you.
oh, sister. i would notice everything. every tiny blink. every sigh. i would freak out. i would not know how to handle it. and then i would come to you for wisdom and grace because indeed, friend, you are full of it. i don't know how you stop talking about this. i would never stop talking about this. but i fear i'd not be talking about it as well as you do. and that alone is amazing.
you are doing exactly what you should be. what else is there to do?
Keep calling your doctor and telling him what's going on. You never know what piece of information, however small, might lead to the answer you're looking for...
I can't even imagine how hard and frustrating this must be for you ...
sending you positive thoughts
You need to keep writing about this, keep being open about it. This isn't complaining - it's worry and fear and love. It's motherhood.
Don't ever feel like you are pestering the doctors with your questions about KayTar. You are right to keep track of all of this and tell them about it. The more they know, the better they'll be able to diagnose something. You are just following your instincts and your insticts are good.
I just hope and pray you get some answers soon.
Oh Kyla-I can't imagine how frustrating, how tiring, how frightening this must all be. Keep fighting the fight, keep noticing, and no, don't shut up. We want to be here for you on your journey.
Please keep the on going journal going...
It is documenting all...And it keeps a lifeline out there as well....
I know of no answers but read and hope for solutions...
The fact that KayTar could hold a straw is a huge milestone...
Insert neuro for ped and you have my situation. My son has epilepsy, supposedly LKS. Every blink, twitch, developmental regression I call. We are now headed towards our fourth neuro with no answers. I will find the right one, some day but without my notes and observances it would be much harder. Keep watching her. You'll find answers!
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