Yesterday, taking advantage of having NO medical appointments for babies (!!!), I researched several issues instead. Lately I've been blog hopping late at night (or even in the day, I admit), and not just because I LOVE reading how other people live and admiring their creativity and seeing the pictures of their beautiful, highly functional families...although I do a lot...but I also figured that soon or later visiting one of these amazing mother-of-many-children blogs, that someone would have special needs kids. Today I discovered this one, Octamom! (Yep, 8 kids, including a hearing impaired daughter and twins, and she homeschools.)
I related to her story of her daughter being fitted with the hearing aids, walking out, and no further help...until the hero of the story, the mother of course, tracked down a group who would answer their questions. Here in Bolivia, the lady at the hearing aid clinic/store/whatever it is just put it in his ear and said to come back in two weeks and I was like uh.......that CAN'T be all there is to this. When do we take it out? Then how do we put it back in? How do we know if the volume is too high? Can't that volume knob be moved wayyy too easily? (Answer: it can! By the time we got home, several errands later, it was twice as high as she had set it. Oops!)
And the main problem: the highly valuable end practically flaps in the wind it's so loose on him. With a spastic little body and (currently) 16 brothers and sisters, this is NOT gonna work. So now I'm researching how to better secure it. The tias and I are also curious as to what the little switch is, or does. I'm already planning to go back early next week, and hopefully the main guy will be there and can answer our rapidly growing list of questions. Also it seems to me that B isn't responding any better so I think the volume will need to be increased, or is that due to the brain damage, or that he can't control where he looks very well? Talk about a wad of issues at once!! This is going to be interesting. Now to find a blogger with a baby with cerebral palsy...
3 comments:
hmnn....well, I'm afraid I can't help you much. No kids with cerebral palsy, though it's part of my pediatric nursing test tomorrow. (pray for me....) And the hearing aids....all i know is sometimes it takes awhile for their brain to learn to process sounds that they weren't hearing before. You know... the whole "if you don't use it you lose it" thing. ususally a therapy thing
I'm so thrilled to get to 'meet' you! Thanks for coming by my place. What a delight to see that you are advocating for these little guys. There is much you can do for them and I would love to help direct you to the resources we have used.
On the cerebral palsy issue...our 7 of 8 was diagnosed in May with neonatal stroke, which has resulted with weakness on her left side. While her issues are not as challenging as your little one, we have found that lots of time playing on the floor, lots of interaction, and of course, lots of instruction from her physical therapist and occupational therapist has all helped her make big strides. If you have an email address you wouldn't mind sharing with me, I can ask 7 of 8's therapists if they wouldn't mind helping you find the resources you need to work with this little one.
Your tenacity and love for these children is so inspiring! Bless you, bless you for serving 'the least of these'...
Blessings!
Yeah, I imagine it will take some getting used to for him/his brain as well as us. =) Just found out tonight that a baby being adopted by missionary friends here has cerebral palsy. Such a blow... I know somewhat how the weight of such a diagnosis feels!
Thank you so much, octamom for your comment and offer of resources, yeah!! I can now pass them on to this other family as well. My email is Jennifer @ casadeamor.org. Look forward to learning more!
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