So, one of the side effects of Angelman syndrome as seizures. Ronnie has myoclonic epilepsy which is somewhat controlled by medication. She seems to go through ups and downs and lately she is having more seizures; to the point that even her teacher is noticing. Anyway, we've contacted her neurologist and we have an appointment in a couple of weeks to have her meds adjusted.
Emma had karate last night and it was kind of funny: the sensei was teaching them self-defense holds and I almost put up my hand to ask "Is there a way to defend yourself against these holds? I'm pretty sure she's going to be practicing some of them me". but I didn't. See, I can be mature!!!
I'm getting used to all the vegetarian food but sometimes I feel like I should start a minor revolution. Veggie Jumbalaya - was okay except for the pieces of vege sausage... kinda nasty. Sorry hon.
"til next time.
Tuesday, November 16, 2010
Monday, November 15, 2010
Daily affirmations; sort of
So, I've decided to try and post on a daily basis and use this as a short of journal-ish thing. I'm not sure if this will work or even be interesting to anyone but me, but it is something I'd like to try. I think this was my original thought process anyway, but I have such a hard time committing to these things....
Anyhoo, here goes: We actually had a pretty good weekend until we tried to play with both Emma and Ronnie at the same time. Poor Ronnie: her butt must get so numb 'cause sometimes she spends hours sitting in her chair. I'm out and about with Emma and Brian is doing stuff around the house and we just don't have time to play with her like good parents. Anyway, so yesterday I took her out of her chair and placed her on the floor and I sat at the other end of the hallway and encouraged her to crawl toward me; which she did. Then Brian sat down at the other end and she crawled towards him. Then Emma came and sat with me and Ronnie gave up crawling - she was with her dad and so all was good in the world. Finally Brian got up and walked her towards Emma and me and we were all laughing... until Ronnie got too close for Emma's liking and she started to freak. Now granted Ronnie stepped on her but I hardly think she was cutting off Emma breath and was practically suffocating her as Emma would have us believe.
I get scared when I think of Ronnie's future. What will it be like? Who will take care of her? Will she be stuck in an institution/half way home with no one to look out for her? I know it is not Emma's responsibility to take care of her but sometimes I wonder if she will even acknowledge the fact that she has a sister when we are no longer around to force it. I wish Emma would let herself go enough to enjoy Ronnie for who she is and ignore the fact that she drools. (if this being written on paper rather a screen, there would be little tear stains on the page; how's that for pathetic).
Anyway, Emma and I had a good chat afterwards where she finally admitted that she would be sad if something happened to her sister. This I can work with; indifference is a different beast all together. I'm done now.
'til next time.
Anyhoo, here goes: We actually had a pretty good weekend until we tried to play with both Emma and Ronnie at the same time. Poor Ronnie: her butt must get so numb 'cause sometimes she spends hours sitting in her chair. I'm out and about with Emma and Brian is doing stuff around the house and we just don't have time to play with her like good parents. Anyway, so yesterday I took her out of her chair and placed her on the floor and I sat at the other end of the hallway and encouraged her to crawl toward me; which she did. Then Brian sat down at the other end and she crawled towards him. Then Emma came and sat with me and Ronnie gave up crawling - she was with her dad and so all was good in the world. Finally Brian got up and walked her towards Emma and me and we were all laughing... until Ronnie got too close for Emma's liking and she started to freak. Now granted Ronnie stepped on her but I hardly think she was cutting off Emma breath and was practically suffocating her as Emma would have us believe.
I get scared when I think of Ronnie's future. What will it be like? Who will take care of her? Will she be stuck in an institution/half way home with no one to look out for her? I know it is not Emma's responsibility to take care of her but sometimes I wonder if she will even acknowledge the fact that she has a sister when we are no longer around to force it. I wish Emma would let herself go enough to enjoy Ronnie for who she is and ignore the fact that she drools. (if this being written on paper rather a screen, there would be little tear stains on the page; how's that for pathetic).
Anyway, Emma and I had a good chat afterwards where she finally admitted that she would be sad if something happened to her sister. This I can work with; indifference is a different beast all together. I'm done now.
'til next time.
Sunday, November 14, 2010
Being calm to avoid the storm
So, the last few weeks with Emma have actually been pretty good. After our last yelling match which had to do with her spending 20 minutes staring at her socks convinced that they were not the same blue (seriously) instead of getting ready for school, we decided to try a different tact: to whit, we gave her an alarm clock, set it for 6am and gave her the responsibility of getting herself up and ready to leave for school.
And it is working...
She's had a few mornings where the panic starts but she then manages to pull back before it gets totally out of control and gets herself ready. I'm so proud and happy... The stress level has reduced tremendously and we are all getting along much better.
No one told me that 12 would be a repeat of the terrible twos... now I'm worried about the throttle 'em threes....
'til next time.
And it is working...
She's had a few mornings where the panic starts but she then manages to pull back before it gets totally out of control and gets herself ready. I'm so proud and happy... The stress level has reduced tremendously and we are all getting along much better.
No one told me that 12 would be a repeat of the terrible twos... now I'm worried about the throttle 'em threes....
'til next time.
Friday, November 5, 2010
Disney World in a day
On Wednesday, the four of us were up and out of the house by 3:30am. Why? To bring Ronnie to the airport of course!!! Ronnie had been chosen by an organization called Dreams Take Flight (DTF)http://yul.dreamstakeflight.ca/en/index.html to go to Disney World for one day. Yes, I did say one day.
What was really nice is that Emma can with us to drop her off and pick her up and she was really friendly. She wasn't snotty or embarrassed to be seen with us but was actually really good. Both girls got their pictures taken with several Montreal-area mascots and Emma got to sit in the cockpit of an F18.
The DTF people are incredible. They took 180 kids to Disney and outfitted them and the volunteers from head to foot - even new shoes; the plane practically parked in the hangar... it was really cool. I can only imagine how excited all the kids must have been.
Anyway, we were back at the airport for 12:00pm (midnight) to pick her up but we didn't get back until past 1:00am... what a long day for everyone!!! But she had an amazing time. Rode the rides (some in her wheelchair and some out), ate lots of food and met all the Disney characters you would ever want to meet. I can't wait to see the pictures.
We actually kept everyone home the next day so we could all recoup... I think that was a brilliant idea. I don't think I've ever seen a kid that tired before... it was actually quite funny.
Anyway, the kids all had a wonderful time and I'm really not sure who appreciated the trip more: the parents, the kids or the volunteers... Thank you thank you thank you for allowing her this opportunity.
'til next time.
What was really nice is that Emma can with us to drop her off and pick her up and she was really friendly. She wasn't snotty or embarrassed to be seen with us but was actually really good. Both girls got their pictures taken with several Montreal-area mascots and Emma got to sit in the cockpit of an F18.
The DTF people are incredible. They took 180 kids to Disney and outfitted them and the volunteers from head to foot - even new shoes; the plane practically parked in the hangar... it was really cool. I can only imagine how excited all the kids must have been.
Anyway, we were back at the airport for 12:00pm (midnight) to pick her up but we didn't get back until past 1:00am... what a long day for everyone!!! But she had an amazing time. Rode the rides (some in her wheelchair and some out), ate lots of food and met all the Disney characters you would ever want to meet. I can't wait to see the pictures.
We actually kept everyone home the next day so we could all recoup... I think that was a brilliant idea. I don't think I've ever seen a kid that tired before... it was actually quite funny.
Anyway, the kids all had a wonderful time and I'm really not sure who appreciated the trip more: the parents, the kids or the volunteers... Thank you thank you thank you for allowing her this opportunity.
'til next time.
Monday, November 1, 2010
Meet the teacher and IEP
So last week I had a quick "meet the teacher" appointment with Ronnie's teacher Anna. She seems to a lovely woman who really likes the kids in her class which is great; and Ronnie, being Ronnie, has managed to wrap everyone at school around her little finger... everyone knows Ronnie.
Anyway, so the really good news is that this year we get to update her IEP and one of the things we want to focus on is communication. Her teacher and I agree that Ronnie is now at a place where we can start using pictograms. I want to start basic and only focus on a couple; like Yes, No, More, Hungry, Thirsty. Although it would be hysterical to get her signing something rude to her sister I don't think we are there yet. That's what her parents are for; we've got your back baby : )
It was also quite interesting to discover things she does at school that she does not do at home and vice versa. She will stand and lean on a table while getting her diaper changed at school but at home, she plays rolly-polly-crocodile-death-spiral on us when we change her diaper (you want an extreme sport? Try changing and Angel-diaper - most people break a sweat)..
They get her to craw and we get her to walk up stairs. They can leave a bowl on food on her tray and we have to keep it away from her fast hands and longer arms or she knocks it to the ground. They can't get her to eat anyting but pasta and we can get her to eat practically everything - no matter how spicy it may be.
All this to say that I'm looking forward to adjusting her IEP and placing concrete goals versus pie-in-the-sky generic ones. Thanks to the Angelman Conference this summer I actually fee like I'll know what I'm doing this time around.
'til next time.
Anyway, so the really good news is that this year we get to update her IEP and one of the things we want to focus on is communication. Her teacher and I agree that Ronnie is now at a place where we can start using pictograms. I want to start basic and only focus on a couple; like Yes, No, More, Hungry, Thirsty. Although it would be hysterical to get her signing something rude to her sister I don't think we are there yet. That's what her parents are for; we've got your back baby : )
It was also quite interesting to discover things she does at school that she does not do at home and vice versa. She will stand and lean on a table while getting her diaper changed at school but at home, she plays rolly-polly-crocodile-death-spiral on us when we change her diaper (you want an extreme sport? Try changing and Angel-diaper - most people break a sweat)..
They get her to craw and we get her to walk up stairs. They can leave a bowl on food on her tray and we have to keep it away from her fast hands and longer arms or she knocks it to the ground. They can't get her to eat anyting but pasta and we can get her to eat practically everything - no matter how spicy it may be.
All this to say that I'm looking forward to adjusting her IEP and placing concrete goals versus pie-in-the-sky generic ones. Thanks to the Angelman Conference this summer I actually fee like I'll know what I'm doing this time around.
'til next time.
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