Tuesday, January 29, 2008

Funny new trick

Paige has been having a lot of trouble sleeping lately. My theory is that it is because she is spending so much time immobile, that her body doesn't really know to relax when its nighttime - that there really isn't much transition for her, somewhat similar to the sleeping problems people who are blind sometimes have.

Because of her casting, she is sleeping in a hospital bed on our main floor, and I am sleeping next to her on the couch. She has to be turned every couple of hours to prevent bed sores, and needs help to make any moves to make herself more comfortable.

The other night, she was just not going to sleep. She was in a good mood, singing away, tapping on her bed rails, kicking the one foot she has mobility in - anything she could do to entertain herself.

It was getting late, and I was getting tired - somewhere around midnight. So, I would say to her, "Paige it's time for sleep." And then she would fake snore for three or four breaths, and then laugh hysterically!

It was so funny to see her think of that joke all on her own, and to try to get away with something. Every time I moved, or rolled over, or cleared my voice, she would start the snore again, and then giggle afterward.

Tooooo cute!

Thursday, January 17, 2008

Paige had her check-up today

She is doing really well. I was sort of hoping he would trim the cast down a bit, but no such luck.

I got to see the x-rays of her hips before and after - its really fascinating to see how they look - how the anatomy of hip dysplasia looks - its very obvious that it has literally worn down her hip sockets on both sides.

And the after picture was kind of neat too - she has bone grafts and a big metal plate with three screws in it. Its funny that the screws look like regular ol' carpentry screws, lol.

Her other hip is just as bad, if not worse, so that will eventually be done as well. He says this one looks really good though, and if it works, at least he'll know what to do on the other one.

So, no weight bearing for another 5 weeks - no rolling, etc. Another 5 weeks on her back, poor kid...

Things are falling into place though, and we will be able to get back into a routine next week where she will be able to go to school for a bit in the morning, and at least get some socialization in. I have a personal support worker that will be coming in in the afternoons to work with her. She is very sweet, and does lots with Paige while she is here.

Paige has been just adorable the last few days - so affectionate, so full of laughs and smiles, and so, so sweet. Every time I get near her, her face lights up - what Mom doesn't love that?

If it were summer, and we lived near a beach, I'd carry her in that big bulky cast out to a blanket in the sand, and just waste an afternoon or two talking about nothing, listening to the waves, and watching the shapes in the clouds...

She's actually in a pretty good position for snow angels too, but that entails a little more work, and cold, and wet, then we can do right now, lol.

Sunday, January 13, 2008

For Dave, and for Brent...

Dave over at Chewing The Fat, has been writing about Brent Martin, a young man with a disability who was repeatedly beaten and tortured for the sport of it by three young men who bet each other they couldn't knock him out on the first punch.

When the first punch didn't work, they went on to beat him and hit him 18 times, until he was left dying in a pool of his own blood. Reports say that during the beating, he didn't fight back, that he told his attackers over and over again that they were his friends, that he would buy them a beer.

One of his attackers is quoted as saying, "I'm not going down for a muppet."

Dave wants the world to know Brent's name. He wants us to tell everyone we know that its not o.k.

Its not o.k. that Brent suffered at the hands of these men simply because he was vulnerable and had a disability.

Its not o.k. that we are not in an uproar about this kind of treatment.

Its not o.k. that their sentences to jail could be affected because Brent could somehow be deemed lesser of a person, less worthy than a "normal" person.

Brent mattered. He mattered to those who loved him, including his twin sister. He mattered to those he spoke to on a daily basis and whom he generously gave to.

He mattered.

He mattered to Dave.

He mattered to me.

How dare these kids think that they are better than him, that they could do something so cruel and heartless, and then laugh about it afterward?

Those of us with ties to the world of people with disabilities understand that this goes much further than three kids beating up another kid. It goes so deeply in our own souls that it is hard for us to read the stories about Brent. We understand that this is about a prejudice that few speak of or even know exist, something so deeply embedded in people that they do not even realize their own reactions to people with disabilities, both born and unborn.

Thanks to Dave, Brent will be honoured all over the world this week.

As he should be.

Wednesday, January 09, 2008

We are home!

I'll update more in a bit - Paige is grumpy and needing me - still not eating and not drinking much. She's been vomitting so we're hoping to get on top of that too.

I've got lots of organizing to do today with nurses, etc.

But, we are HOME!!!

Sunday, January 06, 2008


Paige had her surgery on Friday - it was long, and he had to do both her hip and her femur. She is in a spica from her armpits to her ankle on one side, and her knee on the other.

We had trouble getting pain under control after surgery, and they gave her a lot of pain meds. She reacted badly to them, and they had a hard time stabilizing her afterward. Her sats plummeted and her heart was racing.

So, it took a few hours to get her out of recovery.

Her first night was rough - she was awake for most of the night, and in a lot of discomfort. The pain meds made her incredibly itchy, and she didn't respond to benadryl. She was also probably hallucinating from them, which made it difficult to comfort her.

Yesterday, she was very, very swollen - her feet are like little bread loaves, and her face was nearly unrecognizable. She was a bit more comfortable until mid-afternoon when her iv slipped, and fluid filled her arm - it got rock hard and hot to the touch, and very very painful.

It took 4 of us nearly 2 hours to get another i.v. in her - there is simply no place to put it, and everything collapses when they tried.

After that, she got quite a bit of pain meds, and slept from about 4 yesterday until this morning - she was just kind of in and out of it during that time.

She isn't putting out much urine at all, so they are still pumping her full of liquids. She is still pretty swollen and pale from blood loss.

We just had an x-ray to check for pneumonia, as she is quite foamy around the mouth and breathing is pretty labored.

So...we are here for a while longer.

I can't seem to get anything into her to eat or drink...two spoons of oatmeal and a couple of sips of juice that I forced into her this morning caused wretching and gagging for 20 minutes.

I think all of this is pretty much expected - this is not an easy surgery. Still, its hard to watch my baby just lie there, pale and swollen...

We will hear back from x-ray shortly - hopefully we won't have another complication to deal with.

I'll keep updating my blog for those who are reading it.

Tuesday, January 01, 2008

Happy New Year!

2008!! Wow! How fast the years fly by! This year, I will turn 44, will celebrate my 17th wedding anniversary, will wish my kids a Happy 11th and 15th birthday; I am 3 times Dakotah's age, nearly 4 times Paige's age. I will have been a licensed driver for 28 years, will have been able to buy alcohol legally for 25 years, will have graduated from high school 26 years ago...

Those numbers really blow me away - really, life does whiz right by us, doesn't it?

Its the day of making New Year's resolutions, and I'm torn between committing, or trying to commit to a million of them, or just forget the whole dang thing.

Some of the things I'd like to do for 2008 is to take more pictures of my children, to laugh more, to do things I like to do more, to have more down time, to be more creative.

So typical of me though, is that every resolution contains the word "more" when in fact the best way for me to make real changes in my life is to embrace the word "less" a bit better.

Its now 12:30 - 12.5 hours since we rang the New Year in. I can hear Dakotah upstairs - she is just now getting up for the day. Wayne got up about 2 hours ago, but hasn't showered yet. Its snowing like crazy here, and he is settling in for (another) day of football.

I've been up since 6:30, have done laundry, vacumming, fed and dressed Paige, showered, tried to log on to my work computer about 200 times so I can get some work done there, spoken to three people on the phone, put the dog out twice, thought about dinner for tonight...

I totally suck at New Year's resolutions :)