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Children's Health For health and neurological concerns in children. |
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09-22-2006, 02:35 AM | #1 | ||
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Junior Member
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Hi all,
As far as I'm aware, I've made a post similar to this each time the forum has been moved (e.g. CN -> CN2)...so this is in no way meant as either an attention-seeking post or an affirmation seeking one. As some of you know, I'm a young person (although as I'm in my late 20s I'm not sure how much longer I'll be saying that) with generalised dystonia, a PEG tube and vision problems. I'm also a wheelchair user. There aren't very many people with this combination of issues (as it tends to be the childhood-onset form of dystonia which is severe, and that's also the rarest type). When I first joined CN it was partially because I was at the upper end of the 'child' age bracket, and needing information on coping strategies/equipment, and partly so that I could share some of my experiences with any parents who found it helpful. Whilst I do still have the odd question related to whether anyone's tried certain equipment, those questions are few and far between now - I'm more here to share my experiences where they are wanted (e.g. what does having a g-tube button changed feel like?). I've also gained (a little) knowledge of comparisons between the US and the UK in terms of different words meaning the same thing, which can help if people can't find an appropriate picture. Also, as some of you know, I'm training to become an OT - which is a different pool of knowledge again (although I have to say that most of the neuro intervention we've been taught I already knew about - just didn't have the right words ). So, any strong feelings about me continuing to post here? Take care, Swift |
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09-22-2006, 08:15 AM | #2 | ||
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Junior Member
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Information is priceless, be it from a mother, a dR, or a person that has been there and experienced it themselves. So I say, WElcome Home!! Your experiences and background is worth a thousand words!
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Melissa, mom to 3 girls. Dalynn 9, Reese 3, and Paige born 2/7/2005. Paige dx w/ Periventricular Nodular Heterotopia and Primary Hyperoxularia type II of the kidneys. Global developmental delays. . |
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09-22-2006, 03:48 PM | #3 | ||
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Junior Member
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You would be missed tons if you stopped posting here. So welcome back and please stick around!
(((hugs)))
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Wendy, mom to Langan, the love of my life, born 7/19/02. Global delays, intractable seizures, mystery girl. VNS implanted 2/10/06, now on small dose of lamictal and fighting for seizure control, and wife to Jon, the other love of my life!! |
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09-22-2006, 10:20 PM | #4 | ||
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Junior Member
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you better stick around, we moms (and dads) need all the advice and knowlege you can offer!!!
Hugs, Debi |
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09-22-2006, 10:25 PM | #5 | ||
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Junior Member
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I'm glad to see you around again!
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Paula S Mom to Dale, Emily (CP, CVI, epilepsy, reflux, g-tube, microcephaly, etc), and Mary Nell . |
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09-22-2006, 11:19 PM | #6 | ||
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Just like anyone eles here, as long as you follow the community rules and do not cause any problems, of course you can post here.
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09-23-2006, 01:39 PM | #7 | |||
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Junior Member
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Swift, you are a sweetheart and a huge asset. Don't ever even think that you are not wanted by anyone. Hang around and keep gracing us with your presence deary. I myself read your posts and Robin's to keep things in my mind for the future. You gals live it, like my Meggie does. You are a wealth of information. Keep a postin deary......
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Wife to Scott for 19 yrs, mom to 3 Joshua 17, Megan 12 , with CP, non mobile, non verbal, CVI, seizure disorder (no meds, only few seizures here and there), etc....Most wonderful little angel ever put in our lives.....Jacob 4 yrs old . . |
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