I figured I would post a link to Ashley's YouTube Videos for Ya'll. A little bit of her & the rest of our clan:O)
http://www.youtube.com/user/AngelTwins2?feature=mhum
Tuesday, March 22, 2011
Kyphosis update
We took her back to the pediatric orthapedic doctor over the summer to keep tabs on her kyphosis that had "appeared" to go down after her foramen magnum decompression surgery. That was not the case as it has been over a year now. She has been to see him every 6 months since she was born.
Her walking has gotten better and she does fall less often now...finally. We have been monitoring her kyphosis and expecting to see a change since she is walking more now. Unfortunately that is not the case. Her kyphosis even though it looked better after her surgery is still causing extreme lordosis which makes it look worse. She has a 43% curvature in her spine, which gives her a total "Bhuda Belly" as we call it. She is very curvy and hard to dress.
In fact, because we have a move this month I opted to actually try to find her clothes that would fit at a retail store......wow, talk about frustrating, now I remember why I started making her clothes for her. It was really a refresher on why I started Lil' Ashley's Closet, because there really is a big need for clothes that fit properly on our children's unique figures!
After over an hour in the toddler baby sections at Khol's I found 7 items I thought could work. Get them home, to try them on.......nothing fits without altering. I really thought I had it covered, but nooooo, the dresses either made her look like a prego 1 yr old, shirts even though they had buttons at the shoulders still didn't fit over her head, and if they did, were 2 inches too long in the arms.
Leggings & the occasional dress seem to be about the only thing I can buy her from a store that fit without altering. No biggie, at least I love to sew, so it works out fine, but I really feel for mothers who don't sew and are faced with this dilemma. I'm looking forward after this move to get back to making some designs for other parents and fill this need in our dwarfism community. Running 3 businesses takes too much away from the true needs out there, so I'm slimming down my other shops and focusing on Lil' Ashley's this summer, prioritize, prioritize.
Anyway, got off on a little tangent there, back to the ped ortho doctor. Since her kyphosis was not getting better, we decided to try a brace. She got to pick the color, it's a pretty pink and worked for the first couple days because we over-exaggerated how beautiful her new "dress" was. becuase she had been so used to walking without it, she started falling a lot more, and within a week, she was throwing all out temper tantrums and hiding it if we even mentioned it.
Every time before school I would try to put it on her it would be literally almost an hour of crying and saying she couldn't move and it was too tight (even though I had it on the loosest setting) Her teachers commented that she was falling more at school now and in the first week had 2 bumps on her little face from falling. It straightens her a lot, but it also sets her balance off, because she's been so used to having her balance with the extreme curve in her back it for so long.
I made a deal with her that since school was only 4 hours at a time, we would wear her brace the rest of the day once she got home. She was tickled pink with that, but still with the screaming and crying. Literally it takes 2 people to get her in it after we catch her. So the question we're faced with is it it doing more psychological damage than it is worth?
The ped ortho doctor and a couple dwarfism doctors agree that there is no proof that it makes any difference. They said, try it and see how she tolerates it, but there's no guarantee she's not just prone to have extreme kyphosis & lordosis. So we could be putting her through the torture she feels it is with no helping her. We wanted to take the pro-active approach, that's why we had her fit for it, because even a little help is better than doing nothing, right? Why do nothing, when we can be proactive and try our best to help her at this young age. The better she is now, will mean the less pain and surgeries for her in the future, and that's what our goal was. So as for now, we still put her in it occasionally and she whines & cries & refuses to move, says "she can't move" (which is totally not true, she is a drama queen) but once she has it on for a bit and we get her mind on other things, she does fine and will wear it all day. And that's the brace issue.
Her walking has gotten better and she does fall less often now...finally. We have been monitoring her kyphosis and expecting to see a change since she is walking more now. Unfortunately that is not the case. Her kyphosis even though it looked better after her surgery is still causing extreme lordosis which makes it look worse. She has a 43% curvature in her spine, which gives her a total "Bhuda Belly" as we call it. She is very curvy and hard to dress.
In fact, because we have a move this month I opted to actually try to find her clothes that would fit at a retail store......wow, talk about frustrating, now I remember why I started making her clothes for her. It was really a refresher on why I started Lil' Ashley's Closet, because there really is a big need for clothes that fit properly on our children's unique figures!
After over an hour in the toddler baby sections at Khol's I found 7 items I thought could work. Get them home, to try them on.......nothing fits without altering. I really thought I had it covered, but nooooo, the dresses either made her look like a prego 1 yr old, shirts even though they had buttons at the shoulders still didn't fit over her head, and if they did, were 2 inches too long in the arms.
Leggings & the occasional dress seem to be about the only thing I can buy her from a store that fit without altering. No biggie, at least I love to sew, so it works out fine, but I really feel for mothers who don't sew and are faced with this dilemma. I'm looking forward after this move to get back to making some designs for other parents and fill this need in our dwarfism community. Running 3 businesses takes too much away from the true needs out there, so I'm slimming down my other shops and focusing on Lil' Ashley's this summer, prioritize, prioritize.
Anyway, got off on a little tangent there, back to the ped ortho doctor. Since her kyphosis was not getting better, we decided to try a brace. She got to pick the color, it's a pretty pink and worked for the first couple days because we over-exaggerated how beautiful her new "dress" was. becuase she had been so used to walking without it, she started falling a lot more, and within a week, she was throwing all out temper tantrums and hiding it if we even mentioned it.
Every time before school I would try to put it on her it would be literally almost an hour of crying and saying she couldn't move and it was too tight (even though I had it on the loosest setting) Her teachers commented that she was falling more at school now and in the first week had 2 bumps on her little face from falling. It straightens her a lot, but it also sets her balance off, because she's been so used to having her balance with the extreme curve in her back it for so long.
I made a deal with her that since school was only 4 hours at a time, we would wear her brace the rest of the day once she got home. She was tickled pink with that, but still with the screaming and crying. Literally it takes 2 people to get her in it after we catch her. So the question we're faced with is it it doing more psychological damage than it is worth?
The ped ortho doctor and a couple dwarfism doctors agree that there is no proof that it makes any difference. They said, try it and see how she tolerates it, but there's no guarantee she's not just prone to have extreme kyphosis & lordosis. So we could be putting her through the torture she feels it is with no helping her. We wanted to take the pro-active approach, that's why we had her fit for it, because even a little help is better than doing nothing, right? Why do nothing, when we can be proactive and try our best to help her at this young age. The better she is now, will mean the less pain and surgeries for her in the future, and that's what our goal was. So as for now, we still put her in it occasionally and she whines & cries & refuses to move, says "she can't move" (which is totally not true, she is a drama queen) but once she has it on for a bit and we get her mind on other things, she does fine and will wear it all day. And that's the brace issue.
Potty Training Revisited
She just has her 4th birthday in March and we decided enough was enough with her lack of potty training. We had been concerned that she was not able to feel the need to go potty because of her surgery.
She started potty training over 2 years ago!! But every time we would ask her if she needed to go potty, she would say "no" then pee in her diaper. So we removed the diaper, and she was naked booty for a few days and fully potty trained. She has her own little singing potty that she can get on & off by herself, so she's independent about it which helps a lot. We've had a sticker book for a couple years, but stickers weren't enough incentive for her. We used sugar-free candies for the first couple days, then for poopies only, and it works like a charm. Sometimes I still give in & give her candy just because though:O)
I really didn't want to go as far as the candy bribe, but come on 4 years old?? She is such a little princess, she has no problem letting others do everything for her, including wiping her hiney, so we had to put our foot down. We were able to learn that in fact it wasn't that she couldn't feel it, she just didn't want to. When we switched to panties, she peed in them 3 times the first day, so we still go "booty free" most of the day when she's home. Even though we still put her in diapers when we're out & about or at church, she usually still tells us when she has to go.
Speaking of princess, at this very moment she has her feet up in her baby brother's face ordering him to"take my socks off"...at least she told him "thank you"
She started potty training over 2 years ago!! But every time we would ask her if she needed to go potty, she would say "no" then pee in her diaper. So we removed the diaper, and she was naked booty for a few days and fully potty trained. She has her own little singing potty that she can get on & off by herself, so she's independent about it which helps a lot. We've had a sticker book for a couple years, but stickers weren't enough incentive for her. We used sugar-free candies for the first couple days, then for poopies only, and it works like a charm. Sometimes I still give in & give her candy just because though:O)
I really didn't want to go as far as the candy bribe, but come on 4 years old?? She is such a little princess, she has no problem letting others do everything for her, including wiping her hiney, so we had to put our foot down. We were able to learn that in fact it wasn't that she couldn't feel it, she just didn't want to. When we switched to panties, she peed in them 3 times the first day, so we still go "booty free" most of the day when she's home. Even though we still put her in diapers when we're out & about or at church, she usually still tells us when she has to go.
Speaking of princess, at this very moment she has her feet up in her baby brother's face ordering him to"take my socks off"...at least she told him "thank you"
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