Meds, monologues and monsoons, OH MY

Meds:  So, Ronnie just had her appointment with her neurologist and he wants us to increase one of her medications.  We already increased it last week but he wants us to go higher.  The assumption is that her growth is outstripping her med levels and they are just not keeping up.  Hopefully we won't have to increase them too much...

Monologues:  Emma will be auditioning for the junior play and to do so, she has to put together a 10-line monolog.  I heard what she wrote yesterday and its kind of funny.  I'll let you know how it goes.

Monsoons: not really, I just needed another M-word.  Although for the day before December, you'd think we would get snow.  Instead it is raining alot and it is ancitipated to continue all day tomorrow.

Rowboat anyone???

That's it.

'til next time.

Fairly quiet weekend

Look at those long legs

So, Saturday was the wrap-up Christmas party for Dreams Take Flight.  Ronnie was able to see the group monitors and get her picture taken with Santa, Mrs. Claus and the Snow Fair.  Mommy and daddy were also given the official DVD as well as a slideshow of just her group which was really appreciated.  And so thoughtful.  She also received a couple of pre-holiday presents, some of which she can play with but we've given the Origami set too her sister.  Emma actually loves doing origami - she's such a nerd (but I love her anyway)...

I have to say that Emma has been incredibly supportive and well-behaved during this whole Disney thing.  No pre-teen anxst, no drama; just smiles.  She has had her jealous moments which I fully understand (and they have not gotten out of hand), but in her mind there was never any question of her coming with us to these events. 

Thank you Emma. 

Oh, and it snowed on Saturday morning and to my dismay, there is still now on the ground.

'til next time.

Big kids room?

So, I had a meeting today with Ronnie's social worker.  We've actually had the same social worker for several years now but this was the first time we ever met.  Not that we didn't try, but... I guess after the temper tantrum I had several weeks ago, they are trying to play nice.  I got to clear the air and let her know that my trust level is zip.  I suppose the good news is that it can only get better. 

We talked about alot of different things including a new bed for Ronnie.  For now she still fits in her cage (single-size hospital bed inside a crib-like enclosure) but eventually she'll figure out she can stand up in it; then we will really be up shit's creek.  I'm trying to debate if I like her ideas or not.  Our main concern is her safety and ensuring that everyone gets a good night's sleep.  A large part of their concern is that we don't 'trap' her in her room.  This was the reason they didn't want to give us the 'cage' bed in the first place. 

She is suggesting a low bed with a cushy mattress beside it in case she falls out.  Then we could put all these foam squares on the floor, bracket her bureau to the wall and lock the drawers.  If you put all kinds of cushions on the floor and even some bean bag chairs, it could end up looking more like a kids room than it does now with the gun-metal gray crib-cage.  Hhhhhmmmmmm, something to think about.

'til next time.

Monumental moment

So here I am, still at work supposedly working, but really reading blogs (Connor's Song) when one sentence just blows my mind  The mom is talking about how they recently bought an Ipad for their son and she had just programed it to say "good night, daddy". 

Just like that a child that cannot speak is given a voice.

'til next time.

Happy Potter – the end of the saga

So, after all my moaning and groaning I finally got to go and see HP7 with Emma.  Her friend that bailed on Friday was supposed to come with us but, oh big surprise, she bailed again.  Oh, wait, it wasn’t her fault, her parents were not being very nice and since it took me 30 seconds before agreeing to take the girls, they made alternate plans and wouldn’t let her come with us.

I’d really like to be mature about this but I’m really annoyed on Emma’s behalf.  This was something the girls were both looking forward to (me as well if I’m being perfectly honest).  It’s not the first time her parents do this and it certainly won’t be the last, but I just have a hard time with understanding the rationale.  They are so insular that they seem to be having a hard time allowing her to be her own person.  Just allowing her out of their sight seems to be a problem sometimes.  The sad part is that this is now becoming a learned behavior for their daughter.  She is now doing the same thing and spends weeks where she just shuts everyone out. 

It’s funny – just writing that last sentence makes me wonder if there is a problem.  I wonder if she gets depressed or if it just a general shut down because she can’t be bothered to interact with anyone?   Hhhmmm… something to think about.

Anyhoo, HP7 was really good and it finally met the expectations.   As an added bonus I got to spend some time with my kiddo which was really fun. 

‘til next time.

Slow weekend

So this weekend has been kind of quiet.  Emma went to see HP7 with some of her friends on Friday and we rented the Last Air Bender on DVD last night.  Between groceries, shopping and cleaning house, it doesn't feel like there is alot of extra time to just 'chill' but I guess that's life.

We also just increased Ronnie's topomax so hopefully the number of seizures she has will start to go down.  I mean they are not huge seizures, just head drops but I'm sure it is annoying for the kiddo to keep popping in & out that way. 

I have to admit that I'm annoyed with one of Emma's friends.  She was supposed to go to HP7 with her then bailed at the last minute.  Now the two of them want to go see it today (and I've been invited to drive them to the theatre) but I'm not thrilled because i think her friend bailed on purpose... and now she keeps lying about it.  Should I just be mature and get over it?  Hmmmm; something to think about.

'tl next time.

I was dumped from Harry Potter night

So, when Emma was 8 or 9 years old and watching wayyyyyy too much TV, I decided that we would "read" the Harry Potter books.  It took us almost a full academic year but we read all seven books out loud. 

When we started reading the first book, she would pout and get mad every time I pulled it out.  But before the first week was up, she was jumping into her p.j.s and throwing the book at me barking out one word: "READ".  Since those days she has become an voracious reader (which is great) and a Harry Potter fanatic (which is a little scary sometimes).  However, J.K. Rowling has done an increadible thing and opened up the imagination of millions of kids worldwide. 

Beginning with the second movie, it was a tradition that I would take Emma and one of her friends who is just as fanatic, to see the HP movies when they come out.  This HP7 was not different.  It had been planned since "like forever" that I would take them on opening night (tonight) to see it.  Instead, I got dumped...

A group of her friends (originally slated to be about 7) decided they were going to go and I was not invited.  I tried my best to guilt her into it, but it didn't work.  Today is opening day and the group of 7 has been reduced to 3, and just to show I hold no hard feelings, I even bought them their tickets in advance.  And no, I'm still not allowed to go.

'til next time.

P.S.: my favorite character is Mrs. Weasley.  She rocks.

Oh, that darn stubborn head of hers

So we've just found out that Emma has failed a geography exam.  Why?  Because she didn't study... Although I'm annoyed she failed, I think I'm more annoyed with the fact that she had all the tools at her disposal to do well and has refused to use them.  Then, when her refusal blows up on her, she just sits and cries and puts herself down.  And this goes for everything not just a geography test.

In this case, she had advance notice of this test by a couple of weeks and despite our nagging to crack open a book "my teacher said we didn't need to study anything" became the stock answer everytime we brought it up. 

Reasons she failed included: "I was sick the day she covered map reading" (may have been true but she was sick 2 months ago); "she gave us an exam on something we never covered" (read excuse #1); "I didn't understand" (try asking a freaking question!!!). 

This I find frustrating. Doesn't bring out the best in me.

'til next time.

Happy days with EPO

So yesterday was very interesting.  Because Ronnie is having more seizures, neurogoly wants us to increase one of her meds (topomax) which of course, is the most expensive one.  We are going to give her a couple of extra days just to see if maybe she was overly tired from lack of sleep, insomnia being a side effect of Angelman syndrome.  Thankfully she usually stays fairly quiet, a situation that from my understanding is not all that common among AS kids. 

Anyway we are going to give her a couple of extra days and maybe by the weekend we'll increase the dosage. 

As for Emma, she's just weird.  I love the kid to death but when she is upset, she is Goth to the end but when she is happy she is so ebullient its almost weird; funny but weird. We've started using Evening Primrose Oil to treat PMS symptoms so maybe that is having an effect?  I'll keep you posted.  What I do know for sure is that right now all seems to be right with her world which reduces the stress on us.  I think (I hope) we (meaning Brian) are taking on less of her stress which in turn is reducing the swirling vortex of misery effect. 

Let's hope it lasts.

'til next time

Seizures, Karate and Veggie Jumbalaya

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.

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.

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.

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.

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.