Monday, October 22, 2007

Here we go again

For anyone that has subscribed or actually keeps updating themselves on here, we're heading back to Toronto Nov 2nd.
We have a meeting at 10 am at Mount Sinai to meet with the High Risk Obstetrics Team. Hopefully we'll have an induction date then! Then at 1pm we're back at Sick Kids to have another fetal echo (ultrasound to look specifically at baby's heart). Hopefully no more complications have arrised and we're still just a classic case of HLHS (no other additional defects on top of things). I think we'll be meeting with our cardiothorasic surgeon too. (The hero that will perform surgery). Not to forget the "single ventricle nurse" that will be taking on our case. (these nurses have one patient at a time to ensure they notice any small changes. That way they can't confuse one patient with another and can alert doctors immediately when something is happening).
Oh and then the end will be to meet with a social worker who will explain all about the financial aide we can recieve and give us more information on the Ronald McDonald House as well as a list of hotels that give us hospital rates.

Special thanks to Dave Khey for getting us a discount at the Marriot Eatons Center. Majorly discounted plus it will still be included in the financial relief so even less! Yay for luxury!

Another Thanks to the families from www.hopeforhlhs.com. your stories have really helped us to prepare for what we're about to experience. I must keep in mind this is a "two steps forward, one step back" sort of journey. I must have trust in the professionals to do all they can to save BB seaton's life!

Monday, October 15, 2007

God Said NO (This is SOOO neat!)



















This is GREAT!.............

God Said No


I hope that you can get the effects on your computers! The words are great, but the movements of the faces add a lot....

I asked God to take away my habit.

God said, No.
It is not for me to take away, but for you to give it up.


I asked God to make my handicapped child whole.
God said, No.
His spirit is whole, his body is only temporary

I asked God to grant me patience.
God said, No.Patience is a byproduct of tribulations;
it isn't granted, it is learned.

I asked God to give me happiness.
God said, No.I give you blessings; Happiness is up to you.
I asked God to spare me pain.
God said, No.Suffering draws you apart from worldly cares
and brings you closer to me.

I asked God to make my spirit grow.
God said, No.You must grow on your own! ,
but I will prune you to make you fruitful.

I asked God for all things that I might enjoy life.
God said, No.
I will give you life, so that you may enjoy all things.

I asked God to help me LOVE others, as much as He loves me.
God said...Ahhhh, finally you have the idea.

If you love God, send this to ten people and
back to the person that sent it.

THIS DAY IS YOURS DON'T THROW IT AWAY

May God Bless You,


'To the world you might be one person, but to one person you just might be the world'

'May the Lord Bless you and keep you,
May the Lord Make his face shine upon you,
and give you Peace.....Forever'

'Good friends are like stars...You don't always see them,
but you know they are always there








.

__,_._,___


Friday, October 12, 2007

Some Mothers get Babies with Something More

Some Mothers Get Babies With Something More
Written by: Lori Borgman Columnist and Speaker

My friend is expecting her first child. People keep asking what shewants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will rollover, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by thebillions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want,but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at sometime or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clich├ęs and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a drafthorse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.
You're a wonder.

Tuesday, October 9, 2007

Stress

Well, this is just a day of deep thinking...thoughts swirling and swirling. I sure can't wait until we go to Sick Kids again. (Nov 2nd) So many questions and worries and i just need some answers. I am stressing so much over whether of not to put BB Seaton through the hybrid procedure or to just go straight into stage 1 Norwood. I hear so many stories of babies coming out of the Norwood and doing well, i wonder if its even neccessary to go though the hybrid....isn't that just delaying the inevitable? Wouldn't you want to get the biggest hump out of the way...instead of puting it off until the baby is bigger and the hump is a little bigger? Whats the logic behind that? I hope the surgeons have some answers for me... as well as the single ventrile nurses.
I mean I know that every baby is different, but can we not generalize here even a little bit? These single ventricle nurses have been there every step of the way with babys hybrid or no hybrid. They must have some inclination on how much of a benefit the hybrid is for the baby.


Anyhoo, I'm attaching pictures of my support... my sisters and my nieces...and me...and BB seaton is in there too, he's hiding behind the belly button...:) This was taken at Thanksgiving (Canada) at Mom's house... notice how the stress is wearing on me... I dunno how we're supposed to make it through this... BB seaton isn't even here yet and he's giving me grey hair!