Monday, May 18, 2009

Picture post

So my sister Erica was here this past weekend. She was inspired by a little guy by the name of cameron sky villa... the toddler artist. His paintings sell for upwards of $500 dollars. Well, Erica is the resident artist in our family... well the next generation I guess, and she wanted to inspire Yale, one of the future artists...

The finished piece.

Here is one of the many videos of Cameron on youtube! Be sure to inspire your children's creativity... its an awesome experience!

Friday, May 15, 2009

wait for it....

There it is... that nice calm exhale... *phew*

We are living in the exhale. The calm sweet easy part of life. I spend my days doing nothing really, just watching Yale grow up. How great is that? I know not many of us will admit it, or really talk about it, but it has to be said. Heart moms are constantly worried that their babies will die. Its really a hard concept to grasp, but its quite true. When you think about worry in the normal sense, like you are worrying about paying bills, or what to eat for supper, those worries aren't 24/7. You can get distracted from bills... Heart moms worry their babies are going to die. 24/7. It never stops. When I think back to what it was like with Yale from his birth to the day he got his heart transplant, I probably let go of that worry for a total of two weeks... the two weeks after his glenn before the function problems came around. It was tiring, and burdensome and really a horrible way to live.
Today I played with Yale and I put him down for his nap SURE he will be there when I go to get him when he wakes up. No longer do I worry he may never wake up from this nap.
I was visiting Jen and Gabe in the PCCU.... laughing with her about how wierd it is to not know how many diapers Yale makes on a daily basis. I used to be obsessed with pee. Is yale peeing? how much is he peeing? It was the number one sign I watched for to be sure of his health. Everytime he was flown to sick kids or admitted to sick kids or LHSC, it all began with less pee. Today, I have no freaking idea how much the kid pees... Thats right... i've stopped being the hyper vigilant heart mom.
I hate to say these things out loud, worried about jinxing them.... but right now.. I have to say, I'm fairly confident Yale will be around for a while. Its true. I know they warn us that this is just switching one set of health issues for another, but man oh MAN.... am I ever happy with this set of worries... I sleep at night. Yale might cough through the night.... and I just listen. I don't get up and go into his room and turn on the light to watch his color.... thats over now.

Yale has taken to babbling and using his hands to make big animated gestures when hes talking about something exciting to him.... My kid is growing up. I'm sure every mom will agree with me, pretty much when you learn you are with child, you dream and imagine the whole length of a life with a new child. watching them do everything you did again for the first time. When I got Yale's heart diagnosis, I stopped. They wanted me to kill my baby, or he would be lucky to live to be one year old. I've started dreaming again.... about Yale's first day of school, and sporting events, and teasing him when his voice cracks during puberty... we have our lives back.

I really hate that we cannot have contact with the donor families. I mean we are welcomed to write correspondence back and forth. but its through trillium, and we cannot use names or have any means of getting into contact with one another. I really REALLY wish Yale's donor family could watch this blog. see what they have done for complete strangers. WOW... what a blessing and gift that family is! I plan to keep this blog going as long as blogger is going... and i'm actually contemplating putting each year of posts into books for Yale... the book of Yale... as told from mom... Wow... I'm sorry and I know this post is really rambly and confusing... but really... I just had a lot of feelings I had to get out and share.... and maybe seeing this one person will decide to be a donor. Look at how much can happen... and I know for a FACT Yale's life wasn't the only life that was saved that day!

Saturday, May 2, 2009

Just an update!

So Yale had clinic in Toronto on thursday April 30th. it was uneventful as usual (its a new usual, but one I'm getting used to) But I just wanted to clarify for everyone about Yale's lung issues. as previously stated, his left lung has basically no blood flow to it. This was clarified that the lung is actually being perfused and can grow as Yale does, but he doesn't get oxygen from its use. The main worry was with 90 of the blood flow going to his right lung, that it would be straining the right side of the heart. Thats what they went into the cath lab looking at. They found the pressures to be well in the range of what they would consider normal. These pressures will be checked continually during biopsies, however, if he his capable to handle the unbalanced flow already, he will only get more and more used to it. Dr K said basically this will have no effect on Yale or his development, unless he has hopes of being a professional athlete, to which dad replied, "you don't need great lungs to be a great golfer!"

So thats our little update. Funny how it has a good spin on it? I think thats how things might be from now on. Well I can only hope!