Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 It has been quite a while since I posted. just turned 4 this weekend. She has really been progressing in leaps and bounds. Seizure-free for 1 year! She's been walking for 6 months, and is trying to run and jump (mostly controlled falling). She has been climbing everything in sight, which scares me to no end. She can say a few more words, like " bus " (for school). The neatest thing is that she recognizes what letters are, and can say many of them (not that she can tell me which letter is which, or anything). She will find a book and just point to letters and I will hear her say " A, S, O, H, G etc. It is very exciting for our family, because we didn't have high expectations for her academically, and now we wonder how far she will develop to disprove her parents, and all the other professionals. The slightly disturbing thing was that at her neuro check-up, she was given the diagnosis of cerebral palsy. That was a new one for us. She has always been low-tone, and floppy. I guess I was thinking that cerebral palsy indicated higher muscle tone. Any comments? I really wanted to meet with Dr. Dobyns this year, but I am now expecting number 4, due in sept., and it has been a difficult pregnancy. The baby is fine, but I have been extremely sick the whole time. Anyway, just thought I would share the positives of 's development! Candi, mom to - my little stinker! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 In a message dated 5/29/01 5:40:45 PM Central Daylight Time, ckschempp@... writes: > Anyway, just thought I would share the positives of 's development! > Candi, mom to - my little stinker! > > > > Thanks for sharing the progress Candi! K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 -----Original Message----- >The slightly disturbing thing was that at her neuro check-up, she was given >the diagnosis of cerebral palsy. That was a new one for us. She has >always been low-tone, and floppy. I guess I was thinking that cerebral >palsy indicated higher muscle tone. Any comments? >I really wanted to meet with Dr. Dobyns this year, but I am now expecting >number 4, due in sept., and it has been a difficult pregnancy. The baby is >fine, but I have been extremely sick the whole time. >Anyway, just thought I would share the positives of 's development! >Candi, mom to - my little stinker! Hi Candi, Thanks for sharing about 's progress. We sure need to hear this kind of stuff, and often! I also just want to say that I know the disappointment of getting the CP label after such a long time. Hannah was just over 12 months when the neuro said " We might as well call her a CP kid now. " Knocked the sox off me, as I'd never thought of her as having CP. But, you know what? Its just a label, an umbrella term which covers a wide range of presentations. Dont get too hung up the name though - a name changes nothing. It can actually be useful to have the official CP dx to help you to get the services/ insurance/ equipment etc that you may need. I've also found that it is a handy explanation to give people who ask what's wrong with Hannah. Sure beats trying to explain the details of her condition, as most people have heard of CP and think that they know what it involves, and often they will be satisfied with the short answer. There are a few basic types of CP and there are different ways of classifying them. Three main groups are high tone, low tone, and mixed tone. The classification can be based on the location of the brain injury, or on the location of the movement problems. Hannah had mixed tone in her first year of life and she began to develop certain postures which were abnormal. It wasn't until she was a year old that it was plain to see she was not going to change her movement patterns and that they were the results of her " wiring " . Once we knew it was brain related it was easier to accept the CP tag. She is now regarded as having spastic (high tone) quadriplegia (all 4 limbs), although there are periods of time where she has reduced tone. I hope this helps. Please email me if you want to chat further about it, and I'll share what little I know. Regards – from Melbourne, Australia; mum to Hannah, (4yo; polymicrogyria, complex partial epilepsy, ketogenic diet since 6/00 and as a result almost seizure free, spastic quad.CP, non-mobile, cortical vision impairment, possible conductive hearing loss, swallowing and respiratory issues, non-verbal, global dev. delays, 100% gtube fed by Bard button and a brilliant smile) Quote Link to comment Share on other sites More sharing options...
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