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  1. K

    Growth Attenuation

    Check them out if you’d like - our rooms are next level! I design everything - from layout to artwork. Changingplaces.org.nz
  2. K

    Growth Attenuation

    Charley was on a massive cocktail of anti seizure meds prior to the Estrogen patches. None of them impacted her seizures. Within 3 days of the first (low dose) patch they stopped. Like, dead in their tracks stopped. Her high tone also lowered within those three days, as did her eye rolling...
  3. K

    Growth Attenuation

    I don’t really think in terms of “quality of life”, even for myself. I personally don’t have the life I would have chosen for myself, but that also doesn’t make it ”poor quality” so I find the concept unhelpful - it’s asking for a judgment that I’m not sure someone can easily make for themselves...
  4. K

    Growth Attenuation

    Yeah I guess. Of course, naysayers would argue she’d have potentially been just as happy without the growth attenuation. But of course, she’d have still been seizuring 200 times a day for a start…
  5. K

    Growth Attenuation

    Yeah she’s generally pretty chill these days - ie she has happy or relaxed faces much more often than a stressed face or tense tone and crying. She likes the sun in her face and light breezes. She likes being bounced in our knee and all encompassing cuddles. She likes being in water - if it’s...
  6. K

    Growth Attenuation

    Yes, but it’s limited beyond what most will ever experience. As I said I can tell when she’s hurting (then do a process of elimination to find why) or when she’s happy (usually that simply means not hurting…) but I can’t tell you “how happy” which is what I was originally asked
  7. K

    Growth Attenuation

    Enjoy your special time x
  8. K

    Growth Attenuation

    I didn’t say it was without risk, but fairly minuscule - and certainly acceptable for long term use of contraception, for example, even when other alternatives without risk exist. When it came to growth, we tried to see it as if we were in Charley’s body and brain. If I were a newborn...
  9. K

    Growth Attenuation

    Yes, apologies - 1960’s
  10. K

    Growth Attenuation

    Sure, but in all these decades of hoists being in existence they still haven’t managed to create them without risk of breaking bones… Estrogen is used by billions of women for contraception and HRT long term and is proven very safe with fairly minuscule risk. High dose Estrogen has been used for...
  11. K

    Growth Attenuation

    Be skeptical all you like - in fact, help us find one! Having some kind of choice for us and other families like us would be great! Why would we focus on something unlikely to happen in the future as opposed to giving her as good a life as we can from the get go? Why would it be of some concern...
  12. K

    Growth Attenuation

  13. K

    Growth Attenuation

    “Even babies communicate through behaviour” is totally true but Charley’s behaviour is more like a newborn. “Even newborns” can grab your finger Charley’s never been able to close her hands. She has virtually no movement.
  14. K

    Growth Attenuation

    I can’t answer how happy she is. I can only tell you she is comfortable. She has happy faces at times but can’t laugh. She can let us know when she is hurting (her face reddens with stress and she frowns, her heart rate sometimes tells us about the more severe pain because she doesn’t cry much...
  15. K

    Growth Attenuation

    I haven’t contacted them. Part of the reason we did the article was so folk like them could contact us! Noone that opposes ever has.
  16. K

    Growth Attenuation

    Answering more as time allows - it’s a busy wee morning here… I’m not aware of studies. I’m also not sure sure how that could even be achieved, firstly because “quality of life” is totally subjective and opinion based and would differ widely for every individual and secondly because folk like...
  17. K

    Growth Attenuation

    That’s ok! I wrote it that way deliberately.
  18. K

    Growth Attenuation

    You think the future isn’t always a huge concern? Yeah, we considered it… Truth is, we’re highly likely to outlive Charley. The oldest in a similar condition to her that I’m aware of within our peers is 32. To add extra worry, there are no institutions in New Zealand that could take her. There’s...
  19. K

    Growth Attenuation

    Ironically you may need to google how to google alert…
  20. K

    Growth Attenuation

    Hello to you too… Thats quite a starter list! My little guy has sleepover friends here right now so I’ll get to this I’m chunks when I can but the easiest of them to answer is yes, Charley is still alive. She just turned 18 last week. She remains much as she did in almost every way as she was...
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