Too tired for fluid and coherent prose tonight. Things are good. Nik’s recent blood tests all came back “normal” and his CT scan is on June 9th. We’ve been weaning him from one of his seizure meds and do see a bit of a decrease in the painful episodes. We’re starting to wonder if the ear stuff (flicking, swelling, shaking his head, disturbed equilibrium) is completely unrelated to what seemed to be cluster headaches. They both started up around the same time (well over a year and half ago) but the headache-like activity increased shortly after we added this particular med —which, ironically, is also used for treating severe headaches, too!
Interesting to note, too, is that Nik’s need for a midday nap also seems to have diminished as we’ve reduced his morning dose of this med. In fact, for nearly a week now, we’ve cut out his afternoon nap and Nik has fallen asleep pretty quickly each night and made it through most nights without so much as a peep! He’s been sleeping roughly eleven hours straight!
We’ve also noticed another uptick in Nik’s communication skills/language acquisition. Just this weekend, he started to use two signs together when requesting something —“open please” or “more please” being the most common. He’s still crying, screaming, or head-banging to get our attention if we are not within his line of sight; once he knows we can see him, Nik reverts to trying to sign. Not perfect but a marked improvement.
Speaking of improvement…Nik’s communication devices have finally arrived! It felt like Christmas when I picked them up today.
And, finally —well, not really but I’ll save the rest of it for another post —Nik took his first voluntary bite of a pretzel stick today! It scared him a bit and he wouldn’t try it again but he did let Miss M continue to tap it against his back teeth. Progress.
Well, I’ve run out of mental steam —Nik had me up at o’dark-hundred hours this morning to change a stinky diaper and pajamas. The little fink went back to sleep right after I left for the gym. Ah well, it builds character, right?
We’re already characters. 😉
Yay, Nik! Here’ shoping those nasty episodes just fade away… or even better, come to a dramatic and instant stop.
Tweaking medications and figuring out what is helping and what is not can be so difficult. I hope you are able to get it figured out.
I am so glad his communication tools arrived. I can’t wait to see how they work for Nik.
wow, lots of things… so cool about the signing AND really cool about the sleeping!!!!
11 hours straight! Way to go Nik! How wonderful, it’s great that you both are getting some good sleep. We need the sleep to keep up with the kids in the morning he he. What a huge step for Nik, trying a pretzel! It sounds like Miss M is really doing a great job helping Nik to try new things.
He’s such a darling kiddo.
Communication devices!! Hooray!
Honey, you are one person who does not need anymore character building – you have enough for all of us.
But I’m glad to see that he keeps you on your toes.
Love you.
Certainly does biuld charater! Some very positive things there. Good luck for the 9th.
Thanks for the updates! I wonder if the decrease in seizure med correlates to the increase in language at all…
I love that he’s not only putting two words together, but that he’s being super polite about it too!
Hey there. All good news! And I love that his language is getting more complex. Wonderful to hear (and sorry about the stinky diaper)
I’m a lurker on your blog. I work with kids with ASD. I think it might be helpful if you taught Nik to use an AAC device (or something like a bell) to get your attention when you’re not in sight and he can’t come to you. That way he wouldn’t have to revert to crying, screaming, and head banging.
Hi Anon. Thanks for the suggestion. You may have seen the post a while back about the challenges we are having with AAC devices…Nik still kind of thinks of them as cause/effect toys. We are working toward something like what you suggested but seem to be having difficulty figuring out how to get him to the point where he knows to only use it when he wants Mommy/Daddy.
That said, now that we have his devices and are seeing a marked increase in INTENTIONAL communication, it may come a little easier.
Thanks for reading. 🙂
I bet you wish you could have gone back to bed.
Putting those words together is great.
Little things are really so big.
Smiles!