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.

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.

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!!!

Post-Op

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.

Sisters

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 :)

Glory To God in The Highest - and Peace To His People On Earth!!

Merry Christmas Everyone!

We have a surgery date!

So, Miss Paige will be holding out for the 2008 model of hip - her surgery is scheduled for January 4th.

I'm looking forward to the day, so that we can finally get it behind us - these last three months in a body cast were a surprise for us - and, had we known this would have happened, surgery would have taken place sooner for her, so that all of this could have been healing time.

Her surgery will be a long one - between 7 & 9 hours if all goes well. We are praying that she won't have any of the complications that we have been warned about - severe blood loss, infection, etc. And, if she does have them, we pray that the doctors who care for her will be prepared to deal with them.

Although its been quite a journey so far, I am also very grateful - it could have been worse. Through it all, Paige has remained her sweet, happy self for the most part. I have loved the extra time I have spent with her, and have felt so close to her as I laid down beside her on the floor and just "chatted" so many times.

Just as it is a celebration of humility in my church for a bishop to wash the feet of his parishioners, it is that same celebration of humility and joy that makes it so easy to care for Paige - to give her sponge baths, and to eat our dinner on the floor beside her so we can all eat together.

It was not a burden to bundle her up on that cold, cold night and put her in her wheelchair, and plow through the snow to watch the parade - it was our great privilege, and we did it with the knowledge that we are very, very blessed to be a family who loves one another, and who clapped and waved and laughed at Santa as he waved to the crowd.

Paige has been so healthy this fall - not a single runny nose, not a cold, etc. Her skin has held up well with this cast - there have not been any tender spots that we have had to worry about.

I have rather enjoyed sleeping downstairs with her - when this is all over, I will miss waking up to cover her up, or just to watch her sleep for a while, to listen to her breathing, and to lift my eyes to sky and thank God, over and over again, for the gift of her.

And, I daresay my husband has made himself quite comfortable having a room of his own for the first time in nearly 20 years!! He has set it up like quite the bachelor pad - with a stereo for his old record collection, and sprawled across the whole bed like he owns it :)

Even though he says he misses me, no one has jabbed him in the ribs and told him to stop snoring or to get on his own side of the bed, or to turn down the radio or give up some blankets for quite some time!

The saddest casualty for me has been that we have had to cut her hair - it was getting so matted and tangled when she would spend long periods of time in her wheelchair or on her back - and it was just impossible to manage - we have to wash it hanging over the bed, and she was very upset at me as I tried to brush it out every day.

So, about 12 inches of it has come off - it is no longer down past her bum, but about halfway down her back. My heart still tugs when I look at it, although she seems rather unaffected by the whole experience, except hair care is much easier now.

I am heading into our Christmas celebration with a happy heart - so grateful for so many things in my life...my wonderful community of T21 sisters, my children, my husband, my sister, my dear friends...

Annette

Annette passed away this morning at 1 a.m., surrounded by her family. She leaves to mourn her sister, Lisa, her husband, Tom, and her two boys, Kurtis, 9, and Ryan, 7 and so many friends. Annette was part of our Trisomy 21 family - Ryan has Down syndrome.

She was a wonderful friend, wife, and mother. She will be dearly missed by so many.

Please pray for Annette

Please pray for my beautiful friend, Annette. Pray that she is peaceful and pain free. Pray for her two young sons, Kurtis and Ryan, and her husband, Tom, as they struggle to say good-bye to her. Pray for strength for her family, and the knowledge that they are surrounded by love.

Paige's Hand

This is one of my very favorite pictures of Paige - it is the actual size of her hand just after her first birthday. She laid her hand on the scanner, and we took the picture that way...

I have always adored Paige's hands. My first knowledge of them was when she was in utero - when the technicians studied them so closely to see if they were clenched - a sign of Trisomy 18 - the diagnosis she was suspected of having before we got amnio results.

And the day she was born - her hands became the focus of the team of doctors awaiting her yet again, as we discovered she was born with an extra thumb on her right hand.

Just a few days later, I would cherish those hands of her, as there were so many tubes and wires everywhere on her tiny body that her hands were the only thing that I could really see or reach for. How I loved staring at those hands...

Through her first years, we spent quite a few nights in the hospital, where I would sleep next to her, and her tiny hand would reach for mine in the dark. From a very young age, I would only have to whisper to her, "do you want to hold hands" and that sweet hand would come my way...

And, indeed it is her hands that have taught me some really great lessons. Not only because of the things they have done, but the things they have struggled to do as well. She uses her hands to speak, and entertains herself often by watching her hands dance in the sunlight.

Its those lovely hands of hers that have kept me grounded on this journey. They remind me that God did not bless me with her in order for me to prove to the world that I could raise the smartest, most accomplished, most impressive child with T21 ever.

No, His intention was completely different.

He wanted me to know unconditional love for my child. To feel my heart fill with joy every day at the sheer sight of her. He wanted me to be a messenger of this joy; to share that joy with others.

He does not want my life to be measured by success in the usual way we measure success - by a career, or by finances, or accomplishments. Nor does He want me to judge the worthiness of her life in that way.

Instead, He sent her to me so that I could learn the real values of life - those of compassion, selflessness, and yes, sometimes humor.

Those lessons help me to be a better mother to both of my children; as I fight my own perfectionism and realize that they both are gifted in their own way, that they both will soar and they both will coast - that its a natural progression of our lives.

Paige uses those hands to express her love - when you sit with her, or lay beside her, she will ever so gently rub your face, touch your hair, and explore you in a way that only an innocent child can. She particularly loves to see if you have earrings on, and loves the feel of them as they rub against her hand.

Right now, she is using her hands to harass the dog, who is trying to feign sleep under the coffee table, in the furthest corner his 90-lb body will allow him to be. She commando crawls after him, and squeals in this high pitched way that only he can hear, lol

In the next couple of weeks, I will once again be whispering, "do you want to hold Mommy's hand" to her, as she wakes up from anesthesia, somewhat confused and looking for comfort.

And, with any luck at all, when I am old and my days are coming to an end, it will be her who whispers in my ear, "do you want to hold my hand?"

And then...then...I will remember once again that the celebration was the journey, not the destination. That however ordinary anyone else in the world might have judged us to be, we have been quite extraordinary, this team of her and I.

Shameless Plug!

Come and visit us! My sister will be coming up this weekend and we will be going to a craft fair with everything you see listed here, and lots more! Check it out...

What Do You Do When You're Stuck in a Body Cast?

Why, you decorate, of course!! (Pardon the mismatched clothes - we were halfway through getting dressed!)

Sleeping Beauty...

Paige fell asleep on the couch - its pitch dark in the room except for the light of my laptop. I could barely see her face when I took this picture - but I'm glad I did.

So pretty.

A Glimpse of Sweet Baby Cole!

Congresswoman Cathy McMorris Rodgers gave birth to a beautiful little boy named Cole a few months ago. Cole was born with Down syndrome, and recently, his Mom and Dad spoke out on the joys that raising Cole has already brought them.

We were treated to seeing their family, in this interview. Cole is breathtaking, and his Mom spoke with poise and pride about her son.

One of the most important things Congresswoman Rodgers said was that it makes all the difference to hold that baby in your arms, to look at him, and see him as a person.

Wow.

That is so true, and something that so many advocates for people with Down syndrome try to tell expectant parents when they receive this diagnosis. Before birth, Down syndrome is a list of traits and characteristics and predictions, piled on with yet another list of potential health problems.

After birth, Down syndrome very quickly takes its rightful place in your life - a small part of who your child is, regardless of health or ability.

Suddenly, its a tiny little girl or boy with blue eyes or brown eyes, a funny smile, a tuft of hair. There's milestones to be celebrated, no matter when they arrive. There are birthdays and laughter, and trips to the Zoo. There's first tastes of ice cream, and a nervous first trip to playgroup. There's friends and birthday party invitations, and swimming in the pool.

There is joy.

Joy.

Memory Lane!

A sentimental journey...excuse the picture quality - it was pre-digital!!!

Dakotah visiting us just hours after Paige was born - before we found out how sick she was.

Baptizing Paige just before surgery - my father hated this picture of me, lol - a bit pale and puffy from crying and giving birth!

Six months old - unplugged, and 10 big pounds!

So There!

In the wake of my mother sending my sister an article to forward to me on how to "cure" Down syndrome (another ranting post for another day), I offer my readers this...

http://hightechbiz.com/pub/genius.htm

My Gifted, Talented, Genius Daughter Paige - she meets all of these and more:

24 Qualities That Geniuses
Have in Common

The worlds greatest geniuses have all had 24 personality characteristics in common and you can develop the same traits yourself, says an expert.

"Most people have the mistaken idea that geniuses are born, not made", declared clinical psychologist Dr. Alfred Barrious, founder and director of the Self-Programmed Control Center of Los Angeles and author of the book, Towards Greater Freedom and Happiness.

"But if you look at the lives of the worlds greatest geniuses like Edison, Socrates, DaVinci, Shakespeare, Einstein, you will discover they all had 24 personality characteristics in common.

"These are traits that anyone can develop. It makes no difference how old you are, how much education you have, or what you have accomplished to date. Adopting these personality characteristics enables you to operate on a genius level."

Here are the Characteristics Dr. Barrios lists, which enable geniuses to come up with and develop new and fruitful ideas:

1. DRIVE. Geniuses have a strong desire to work hard and long. They're willing to give all they've got to a project. Develop your drive by focusing on your future success, and keep going.
2. COURAGE. It takes courage to do things others consider impossible. Stop worrying about what people will think if you're different.
3. DEVOTION TO GOALS. Geniuses know what they want and go after it. Get control of your life and schedule. Have something specific to accomplish each day.
4. KNOWLEDGE. Geniuses continually accumulate information. Never go to sleep at night without having learned at least one new thing each day. Read. And question people who know.
5. HONESTY. Geniuses are frank, forthright and honest. Take the responsibility for thins that go wrong. Be willing to admit, 'I goofed' and learned from my mistakes.
6. OPTIMISM. Geniuses never doubt they will succeed. Deliberately focus your mind on something good coming up.
7. ABILITY TO JUDGE. Try to understand the facts of a situation before you judge. Evaluate things on an opened minded, unprejudiced basis and be willing to change your mind.
8. ENTHUSIASM. Geniuses are so excited about what they are doing, it encourages others to cooperate with them. Really believe that things will out well. Don’t hold back.
9. WILLINGNESS TO TAKE CHANcES. Overcome your fear of failure. You won't be afraid to take chances once you realize you can learn from your mistakes.
10. DYNAMIC ENERGY. Don’t sit on your butt waiting for something good to happen. Be determined to make it happen.
11. ENTERPRISE. Geniuses are opportunity seekers. Be willing to take on jobs others won't touch. Never be afraid to try the unknown.
12. PERSUASION. Geniuses know how to motivate people to help them get ahead. You'll find it easy to be persuasive if you believe in what you're doing.
13. OUTGOINGNESS. I've found geniuses able to make friends easily and be easy on their friends. Be a ‘booster’ not somebody who puts others down. That attitude will win you many valuable friends.
14. ABILITY TO COMMUNICATE. Geniuses are generally able to get their ideas across to others. Take every opportunity to explain your ideas to others.
15. PATIENCE. Be patient with others most of the time, but always be impatient with your self. Expect far more of yourself than others.
16. PERCEPTION. Geniuses have their mental radar working full time. Think more of others' needs and wants than you do your own.
17. PERFECTIONISM. Geniuses cannot tolerate mediocrity, particularly in themselves. Never be easily satisfied with your self. Always strive to do better.
18. SENSE OF HUMOR. Be willing to laugh at your own expense. Don't take offense when the joke is on you.
19. VERSATILITY. The more things you learn to accomplish, the more confidence you will develop. Don’t shy away from new endeavors.
20. ADAPTABILITY. Being flexible enables you to adapt to changing circumstances readily. Resist doing things the same old way. Be willing to consider new options.
21. CURIOSITY. An inquisitive, curious mind will help you seek out new information. Don't be afraid to admit you don’t know it all. Always ask questions about things you don’t understand.
22. INDIVIDUALISM. Do things the way you think they should be done, without fearing somebody's disapproval.
23. IDEALISM. Keep your feet on the ground -- but have your head in the clouds. Strive to achieve great things, not just for yourself but for the better of mankind.
24. IMAGINATION. Geniuses know how to think in new combinations, see things from a different perspective, than anyone else. Unclutter your mental environment to develop this type of imagination. Give yourself time each day to daydream, to fantasize, to drift into a dreamy inner life the way you did as a child.

I Got My Hair Cut!

On a whim, I said, "Cut it all off - I want it short." I figured that I just wouldn't want to deal with it over the next weeks, especially if we have a hospital stay (which we might just avoid after all!)

Now, I kinda look like a cross between my (MUCH) older sister and this guy:

Ok, Guys - I've Entertained You!!

Now its your turn to entertain me!!! I posted 31 posts in 31 days for October! I have been getting 40+ hits every day on my blog, but NO comments. ***Aren't you intrigued when someone seems to read your blog often, but you don't know who they are?!?!

Say hi - I love making new friends!


***Edit - Ok, so I got some comments, lol...just not 30 or 40 a day...I live with a teenager - I exaggerate ;)

Happy Birthday Annette!!

Please hop on over and wish my friend Annette a Happy Birthday today! You are an amazing woman!