This is one of my least favorite places to be.
Waiting.
Waiting for records to be mailed.
Waiting for the phone to ring.
Waiting for decisions to be made.
I send the consent form to the GI doctor on Saturday, so they should be receiving the form in the mail today (if they haven't received it already). Hopefully they'll fax Nolan's records to the surgeon quickly - I want to know what the GI team at Golisano Children's thinks, and what we need to do next.
I don't like the aimless feeling of not knowing what is going to happen next: I cope better when we have a solid plan in place.
In the meantime, Nolan is doing great. He's eating like a champ - on "off" days, he eats mostly yogurt and grapes, but he makes up for it on good days. His nose is filling up with the yellow-green stuff again, but he isn't too congested. He has had a few dizzy spells over the past few days, and I'm not quite sure what to make of those. My best guess is something vestibular, but who knows? He claims the earth is spinning and falls down or staggers a bit. I'm keeping an eye on those - he seems fine otherwise, so hopefully the "spinny" will just disappear and we won't have to worry about it anymore.
Now I'm off to eat some chocolate bars, because chocolate is a very healthy way of dealing with stress.
9 comments:
Could the spinning be a form of vertigo? From what I understand, it's a viral thing that affects the inner ear? Not that you want something else on the go...
Maybe we could form a "waiting club". I'm okay to wait at the office for the appointment (for a reasonable amount of time) but I hate waiting for information or decisions or to know what's happening next. I can't act on something if I don't know what that something is.
Our ENT saw one of his stumbling spells and said she thought it was vestibular - a lot of kids with hearing loss also have vestibular issues. I'm not sure why his comes in "attacks" rather than a more chronic form, but who knows?? We used to blame his amblyopia for his falls (lacks depth perception), but the dizziness is definitely inner ear related. I'm not really that worried about it since he seems fine otherwise - just one of those "not quite right" things that we keep an eye on.
I hate waiting!
KayTar gets spinny, too. It makes me worry so much, because that was a big part of her neuro episodes. She also just plain falls over sometimes, she'll say that she tripped, but she's standing still when it happens! Between her neuro and vestibular issues, it can be hard to parse out.
Leah, this may sound weird, but watch his eyes when he gets dizzy. Sometimes it makes a difference (to a Neuro doc) if the eyes roll back or twitch, side to side.
I hate waiting too!
Julie
That's a good idea, Julie. He did have staring spells in the past, but he had a clean EEG so I'm not too concerned about seizures. I haven't seen his eyes because he usually just tips over onto the ground. Our neighbor was over once and he just pitched over and fell right onto his head - major goose-egg from that one. He does have some neurological issues (the central apnea, the staring spells, etc) so it does concern me a little, but I have a feeling these are vestibular/inner ear problems. Fortunately it doesn't happen very often!
I hope its not the weakness. Sometimes the cold takes a toll and he is is a small eater anyways. And he makes great pics...
Hello, my name is Emily Paige, I work with Signing Works. I am looking to interview parents of deaf/CI children. I came across your blog and would love to get your views. My email is paiges5@hotmail.com.
Thank You!!
Emily Paige
Don't get me started on the waiting! Just when I slip into the illusion that I have some tiny measure of control over my own life, the universe mocks my naivety by making me wait. I'm a silly human mother who can't just sit around thinking and hoping, but needs to DO things for her son. But I am often forced to wait and I also consume a LOT of chocolate!
I often wonder if Aiden has vertigo when he's having an off balance day. He can be walking and just fall, for what seems like no reason at all. Which is why we're waiting four months to get into neurology ... not fun, especially in your situation where you've been waiting what seems like forever. Hope you find something out soon and get to move on and move forward!
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