Friday, October 31, 2008

AND THE WINNER IS....................

Anonymous! You were the first person to guess that our little Alex the great is a mighty, cute, fuzzy, cuddly, happy elephant for his first Halloween. Well, not his first, he was kicking and breathing last year, but I was in maintain mode, maintain his health, maintain my mental health, I was in no mood to put my baby who almost died just eight weeks before in some silly costume, and pretend everything was normal.

This year We are ready to have some fun!!!!

So congratulations anonymous here is your 10 points.

And good guessing everyone else

Tuesday, October 28, 2008

Where is my baby?

Alex loves to stand. He becomes very verbal, and excited when he stands. He also loves to look at trees.
Here he is standing by himself, on the couch looking out the window at the trees.

Has anyone seen my baby?
The doctor said Alex's ears look beautiful, as they always are. His lungs sounded great, which is always a blessing. So we decided the crying at night is probably the three teeth coming in. Last night was really bad. Alex was up for two hours from 11-1, then up every other hour. He threw up a couple of times, and this morning is congested again. Lots of coughing, and sneezing. Noah is also home with a sore throat, and Joel sounds stuffy. I'm still on my graham cracker high so I'm not feeling too miserable today, although Adam and I have not had a full nights sleep (meaning 5 straight hours) since September.

Monday, October 27, 2008

Any guesses how happy I am?????

This is 1/4 of a graham cracker that Alex took bites of, chewed, and did not gag on.
This is huge, this is the start of eating solid food.
This is a wonderful day!!! Go get a graham cracker and celebrate with us!!!
Cheri how great is it that a year ago you had one depressed mommy infront of you, and one sick boy in your arms.....LOOK AT US NOW!!!

Move over Harrison......

I love four year olds! It just might be my favorite age.
Joel found a cowboy hat, but instead of being a cowboy, he is Indiana Jones.
Way cuter than Harrison Ford, don't you think?

Sunday, October 26, 2008


Alex is still waking up multiple times at night, and stays up for 30 minutes to an hour and a half. We go to the doctor tomorrow, but my mommy instinct tells me everything will check out fine.

Saturday, October 25, 2008

Rock star???

One of Alex's favorite things to do is drum. (Thanks aunt Linda for the drum!) He even bangs the sticks together like a drummer about to rock a beat!

Thursday, October 23, 2008

Ive said it before.......

No sleep? Then no syndromes!
Its one thing to tube feed, give a slew of medications, order supplies, clean up vomit, breathing treatments, therapy, doctor appointments, and just plain worry about your special needs child when you are getting sleep, but take away the sleep, then please take away the special needs.
Alex has not slept through the night since September 31. First it was a cold, now he is getting in three teeth, all the while fighting another cold.

Sorry, no sleep, not much bloggin either:(

Monday, October 20, 2008

One year ago.....

We said goodbye to our Cardinal Glennon Home. Alex was in the NICU for 6 weeks, and then we came home.
I was so glad to say goodbye to the monitors, the o2 sats, the heart rate number, the breaths per minute number, the alarms, the vital checks on my sleeping baby, the tests, the surgeries, the picc lines, the TPN, the iv, the blood gas pricks, the x-rays, the lack of privacy, the public shower, the o2, the echos, the shift change, the lonely nights.
When I got home though, my life was gone.
Everything was so familiar, but it wasn't mine anymore.
Who I was when I was pregnant had vanished, the life I hoped to live wasn't to be, and this new life had been forced onto me.
Everything, everyone that was familiar was just a reminder of what I had lost.
The yellow paint on the walls that I had painted just a year before reminded me of what I lost, the pictures on the wall that I had hung reminded me.
Everyone just kept on living, I was grieving, dying inside, and they just kept on living. Driving by my house on their way to what was normal to them 2 months before, and I was stuck in this new reality.
I was sticking an NG tube into my child's nose, down his throat, and into his stomach so he could get more than 10cc's from his bottle.
This was my life?
What did that doctor say a few weeks ago? A syndrome? Developmental delay?
Excuse me, this cant be right.
Still everyone kept on living, driving, shopping, going to church, having parties.
Coming home is when reality hit, somehow in the medical potpourri of the hospital, tubes, syndromes, it all fit.
Coming home was looking in the mirror at what was really happening, and I hated it. I didn't want it, I was so angry. I was so suddenly isolated and couldn't control it.

A year has passed, I'm still here, in the same house with the same walls, and paint. People still driving by on their way to their normal. Im out there too, living my normal life. I'm ok, in fact I'm doing FANTASTIC, I'm in love with my baby boy, what a gift he is, what a pure joy he is. Developmental delay? We all have it to some degree! Alex is the greatest teacher I have ever had, I love where I am at..... syndromes, tubes, and all.

Friday, October 17, 2008

The photo shoot

You can see them by going to her site, , enter the site. Along the top you will see a tab that says, "client gallery", click that. Near the bottom of the page, on the left is a box for a password. Yours is nja . Just enter that and viola, your gallery will launch. There is a button to stop the slide show and you can click that and then just click each thumbnail individually.

Also Joel and Mae (the girl I watch after school) made the front page of the paper today! Noah and Will are in photos on the inside of the paper but I couldn't find them on line.