First 60 degree plus day in awhile

meant that we just had to go to the park.

Look who's two fisting some food..

That is chunk of french toast in the right hand and a biter biscuit in the left.

We most certaintly DO play with our food around here.

WTF?Wednesday

I'm starting a new weekly column. Not sure for how long but maybe it'll catch on. Its WTF? Wednesday. The idea to share the random crap that gets said that makes you scratch your head and say WTF? Feel free to plagerize and post your own. I always wanted to be a trendsetter.

Ready for this week?:

"My office chair sucks. Sitting in yours feels like an ass vacation"

"Yay ass vacation!"

Its a no-go today

Alan was scheduled to get his G-tube today, but got cancelled. His nose is still just a little too stuffy for it to be safe to go under anestesia. So instead we just hung around the house and did pretty much nothing. Hopefully in a few weeks we can try again.

And it means that I'm back to working tomorrow that I was going to take off.

Your Dreams

Take me to where you dream
Little one
Take me to where you go when I lie next to you
And watch your eyes close and your mouth form
An involuntary half smile

To this place
Where native hearts beat strong
Babies stay warm at mother’s breast
Grow up quick to run and play
Each full of joy
No clouds, no fear

Is this the place where your angel friends
Run free
Beyond the bonds of broken bodies
Held back no more?

And children of famine and war
See that there is more
Than destruction loss and emptiness

In this place, it is always day
Children find their reward
For the innocence
That never went away
Winds are gentle
Playgrounds sprout from tree and grass

Or are your dreams
In a place just as dark as ours?
Is fantasy broken by
Sadistic thought, fear, evil, death
Do the monsters chase you even there?

And is there even a place of peace?
Does it exist?
Even beyond that final and deepest sleep?

Could it be
The only reprieve for all of us
Will only be rest?
Rest

Happy Sunday

Alan just wants to say hi.


Nothing too exciting going on here. I've got to finish up my homework since this next week is going to be busy. I just did not so awesome on my human development quiz. This time even after doing all the reading in the RIGHT textbook and having the book to reference during the test. Oh well. I work tomorrow so I have to finish everything up today. And.. we'll be parting with some of our baby gear. Giving it to our friends who are expecting. Guess our kid is growing up.

89 bottles of pediasure on the wall..

Every wondered what a cabinet full of Pediasure looked like? I figured it out and there are 712 oz in there and about 21,360 calories. Yay! Thanks WIC for hooking us up.

We love this stuff around here. Comes in several tasty flavors.

And its bulking up our little man:)

We counted 20 lbs the other day with our crude dad-get-on-the-bathroom-scale-with-and-without-the-alan method which would be about 9 kg. We'll have to wait and see what the official weight is yesterday but he sure looks like he's growing.

Four more days until surgery and then hopefully No More NG!!!

Its CHD Awareness Week!!!

Commemorating all the brave children and adults battling Congenital Heart Defects and their families. Please take a second to check out the CHD Awareness blog to learn more. This week they will be featuring a different story every day that you can read to learn how heart disease affects children every day.

Not Me! Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I do not usually let my baby stay up until 10 pm.

I did not score pretty badly on an open book psychology test and then a few days later realize that I had purchased the wrong textbook.

Although I certainly don't want him to have another extra medical device on him, I have thought about how cute Alan would be in a pair of glasses in anticipation for his eye doc appointment tomorrow (Although fingers crossed that they say his eyes are perfectly fine)

No, our little boy does not laugh really hard at the slightly violent scenes when he watches movies with us.

Bath days do not feel like special occasions around our house because "real baths" are so few and far between.

I did not lie in my mandatory biology online discussion and say that I've always been fascinated by deep sea ecosystems, when in fact I've never really liked the ocean all that much.

I did not just eat slobbery Cheerios.

Moving Around

Hi and happy Friday from us!

Well Alan's still been sick but he's really got the hang of moving around the living room. Its not a crawl, its a roll with a pushing up on the tummy to pivot kind of thing but he's figuring out how to wreak havoc on everything.

Here's his technique when he sees what he wants:

Got it!

Other than that just lots of rolling around the floor finding stuff to get into and enjoying the new found freedom of mobility.

The bowl.. that is our attempted at "desensitizing" to feeding utensils. Doesn't seem to do much good though. He's smart. He likes the bowl.. just not having anything in it. But its fun to chew on.

And to play peekaboo.

Beach Dream

"Once upon a time, there was a little boy who wanted to go to the beach and see the ocean. But he was too sick." I don't know why I found myself spontaneously starting to tell this story one day almost a year ago. Maybe I was sadistic and for some reason just wanted to make myself cry. It was May, I think. I was at the hospital holding my 8 month old boy after being admitted for months. That past winter we had longed for the first summer with our new baby. He would be done with his second heart surgery (in March) and ready to go outside and play and go with us on hikes and camping trips. But that summer never came. He didn't tolerate that 2nd surgery and his future was looking grim. We were coming to the point where it looked like he was inevitably in heart failure and transplanting would probably be his only option.


So that day, in that hospital room, I thought about how wonderful it would be to just take my little boy away, to a beach far away. He could feel his skin touch the sand and put his feet in the warm water. But I feared that day would never come. Honestly what I feared most of all was that he would continue the painful existence he was experiencing - in the hospital with chest tubes constantly in and out, and then not make it out of the transplant - and never get to experience normal life. I just got it in my head that if I could only take my baby boy to see the ocean..



Well we were lucky enough to get a summer. He stabilized enough to come home on oxygen, continuous line of milernone (IV drug), special formula by tube, and lots of meds. He was restricted to a 1 hr radius to wait for his new heart. It wasn't the summer we had dreamed of but he did get to see his home and the sunshine. And he did somehow survive the transplant and now has the chance for a full life.

I was reading McMama's blog the other day and saw all the photos of her Carribean cruise with baby Stellan. This photo, which I think she captured beautifully just about brought me to tears.

http://www.mycharmingkids.net/2009/01/just-another-day-in-paradise.html

Stellan is quite an amazing little man who managed to survive some severe heart dysfunction in utero to be a beautiful healthy baby today and have his first beach vacation. If you've never met MckMama or her fam go check it out http://www.mycharmingkids.net/

And it reminded me of that dream I had a year ago that I still long for. We have our goal now. We will get Alan healthy and strong enough to travel and he will finally see the ocean and feel that sand and water against his feet.

Not Me! Monday

OK.. its that time again. My trusty assistant and I will be sharing all the things that we DON'T do. (And by assisting I mean that he hangs out in the computer loft with me watching cartoons over the railing.)

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I promise that I do NOT ever use Pediasure as a coffee creamer.

I did NOT find myself leaving the hospital today lugging a fully stuffed backpack of gear, an 18 pound child in a sling, an oxygen tank with a shoulder strap and a full cup of coffee. All because I was too stubborn to bring the stroller in, wanting to be one of those "cool crunchy" mamas but being hopelessly stuck in a world of medical appliances and formula and such.

I did not carry a child and oxygen all the way to the neighborhood mail kiosk to mail my rent check which had to go out today only to see the mail truck still there and realize I forgot my envelope. I did not then have to run back to the condo to grab it and come back to find the mailman had already left and then try to at least pick up our mail, but get confused as to which key to use and which box is ours and go back home empty handed (well besides the letter I didn't get to send and also besides a heavy oxygen tank and a heavy kid in each arm.)

Driving this morning, when the 8:00 am medication alarm went off on my phone, I did NOT seriously consider reaching back to the car seat to steal a binky and give a cyclosporin dose while driving 60 mph on the highway. If I had actually considered doing that, hopefully I'd get a moment of common sense and decide to pull over to give the med on time instead.

I did not score an 80% then an 83% when aloud to retake my first online exam (which was open book and basically open - anything since I had the internet open and available to every resource out there) That would be a bad start to my wanna-be-nursing career if I can't manage an A in any of my pre-req's.

Happy Super Bowl Weekend

Yay! Not sure who I'm rooting for. We will be making some guac later to celebrate and I'm always all about the guac.

Still have a sick kiddo:

He did go into the hospital friday and got his IVIG and a single dose of Lasix and we put him back on 3/4 liter of O2. And he had to miss his appointment with the feeding disorder specialists who were going to check out his eating behavior. And at this point if he's still sick

Other than that.. same old. I'm very intimidated by my classes I'm taking online. Its been so many years since school. I feel comfortable with the material - its just that some of the assignments and tests are so overwhelming. I got an 80% on my first one and that was with my textbook and google readily available. Hopefully I'll get the hang of it. I just think that mommy brain has gotten the best of me.