Here's Connor studying Anatomy and Physiology with his daddy. Anatomy and Physiology is Very Serious Business.
In other serious (but much less adorable) business, the neurology department Connor's doctor is with wants to wait and let the medication levels in his blood build up a bit more before changing anything, since we'd upped his medication a mere five days before he had that seizure on Sunday. Hopefully he won't have any more; keep your fingers crossed for us!
I have a bit of a dilemma in regards to Connor's recent habit of pulling on his sleeves. On the one hand, he's stretching the sleeves and necks of all of shirts out terribly-- particularly his sweaters-- which gives him a sort of waifish look that, while admittedly endearing, does not reflect very well on me. Also the constant rubbing is starting to chafe his skin at the wrists, and he takes his shirt half-off in the middle of the grocery store freezer aisle. So I can put him in short sleeves and just cover him up with a blanket when we're outside.
So which do you think is the lesser of two evils here? I must admit I'm kind of stumped.
~Jess
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12 comments:
Good Dilemma post, Thank you for sharing such a nice information.
well, since you're working so hard with him on his sensory issues, I think leaving the hearing aids in is probably in his best interest. much like your desire to have him kicking and bouncing his legs after evil swim time in the public pool. shirts and sweaters can be replaced and truly, everyone with a toddler or young kid understands there is little control over what kids do to their clothes and we're all just happy they're still clothed at the end of the day :)even if they are wearing cowboy boots with green basketball shorts and a brown thomas the tank shirt. (ugh!) good luck!
Have you see the BabyLegs? It is little leg and arm warmers! He could pull on them all he wanted.
http://www.babylegs.com/
The picture of Connor studying A&P is SO cute!!
As for your dilemma, I guess I would let him play with his sleeves. You can buy cream specifically for chafing, I think. Those babylegs mentioned by Kim and Asa wouldn't be hard to make (or knit!). I wonder if he would throw them, though.
Gosh, Jess....I've got nothing. Emmett has a thing for long sleeves, too - even when it's very, very hot out. He likes to rub the fabric over his wrists.
Given that choice I'd say let him pull his sleeves. In terms of development the hearing aids are more important. See if you can find some soft tightly fitting undershirts, sort of like the silk stuff people wear under ski clothes.
I guess I'd vote with the crowd and say keeping aids in is better than neatly unstretched-out sleeves. A little cortaid cream might help with the chafing (unless it's yet another thing he's allergic to). Maybe you introduce a third element by way of distraction -- maybe some toy that he can hold that provides just the right sensory input, and that is safely tethered to his wheelchair so that you're not chasing it down the freezer aisle every 30 seconds.
Oh, and I forgot to mention that I *love* that picture. You've got two handsome dudes in your life.
I remember reading in previous posts that Connor likes musical toys that light up. I think I've seen some at the store that are sort of bar bell shaped and would be small enough to take places with you. Do you think if you had something like that and offered it to him when he starts pulling at his hearing aides that it might refocus his attention?
For the moment, that's all I can think of.
Jess,
I have a little girl in my class who wears hearing aids and and she is very sensitive to loud or startling noises and will pull the aids out and throw them across the room. One of the things I do when I see her getting distressed is turning her hearing aids off before she pulls them out. Could you do something like that for Connor?
Lisa
Just something of an observation...I remember you posting something about the number of days after increasing meds until Connor would have another seizure. Do you think there might be something about the adjustment in meds causing the seizure...not the meds themselves, but the change...and his body making that adjustment? I haven't really kept track, but does he usually continue to have the seizures in the days you are waiting for the neuro to contact you? Just a thought.
Thanks, everybody!
Chiropractic, I suspect you are a spammer type person/company. Either that or you totally did not read this post. But I will give you the benefit of the doubt and leave your comment up, because I am nice like that.
Kim and Asa those are super adorable! However, Connor would be slinging those things all over the room unless I sewed them to his clothing or something. Which would make them sleeves and kind of defeat the purpose.
Pamela we've actually tried this technique. The problem is that he pulls his hearing aids out when he's getting overwhelmed, so giving him yet another source of noise and music just makes him more overwhelmed. It was a good thought, though.
lisa, thanks for the suggestion, but we're not concerned about losing Connor's hearing aids or him throwing them because they're attached to his shirt with an elastic band. We're concerned with the fact that when he takes his hearing aids off he's not receiving the benefit of being able to use as much of his residual hearing as he can. Turning them off unfortunately means that not only is he getting no benefit out of them, but it actually makes his hearing worse because if they aren't turned on they act as earplugs and reduce his hearing even more.
Kristin, jwg, Julia O'C, and Julia-- I'll go with your suggestion. I agree that his hearing aids are really important, and we've got really nice lotion already in the house because of Connor's eczema, so we can use that. Thanks!
Anonymous, Connor's seizures don't seem to show any correlation between the medication being upped and him having another seizure.
~Jess
what about giving him a swatch of fabric to play with? Maybe you could put together several 4x4 squares cut from old clothing ( including sweaters)...you could sew a buttonhole into the corner and put them on a ring...the ring could be attached to a wheelchair or stroller.
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