Kansas City here we come!

I never realized just how much packing it would take to leave for a month. Now I know! Every part of the car was filled plus daddy brought a load in his truck. Mostly Christian's equipment takes up a lot of room. The drive up was fairly smooth. Christian slept a whopping 30 mins! But then went back to sleep for 40min.

We start treatment on Monday. I went over today to sign some papers. We are just settling in to our new home. My friend Leah who lives here came to visit today. And she also brought me a toothbrush! Don't we always forget that? Here's a pic and video of us leaving.

Trying to post videos for 1st time

This is from our dodging to make a difference fundraiser!

did you notice?

Did you notice him tracking you as you move around the room
repeating mama. .mama. . .mama (sweet music)
crawl up the steps with ease
pick up those noodles on the tray with his thumb and pointer
put his hands in the back of his diaper
topple over and get right back up
using both hands on his sippy cup so naturally
move his feet-left, right, left, right
sitting up so straight
clap with both hands palm to palm
I noticed.

As a mom of a child who doesn't do all of those things-yet. I always notice those actions that seem to be taken for granted by other moms. I'm sure if I was the mom of a typical child I wouldn't think twice about a child who does what they should do naturally. But I'm not and so I seem to notice all of these things in babies and kids and I find myself being amazed that kids just naturally do these things. I thank God for their abilities and anticipate the day Christian does all of them and even if he doesn't here on earth it won't matter.

HAPPY NEW YEAR

It's been awhile since i've updated. We had a wonderful thanksgiving and christmas with family. Christian scored with toys, clothes, and diapers for Christmas! He was a good boy this year.
He had a little bit of a set back due to a new dosage of seizure medicine. It made him floppy and lathargic which meant he did do anything in therapy and then lost weight due to no appetite. But we got that figured out and he's back to our "normal". Please continue to pray that his seizures would stop. They have continually become more intense and increased in frequency. He started a new medicine 2 weeks ago. We are gradually increasing the dose but have not seen that it is helping yet. We praise God that he is back to his normal weight and activities.

I still marvel at the little things-a couple of days ago he was rubbing the top of his head with his right hand. I've never seen him do this. He usually only goes as high as his nose with his hand. I think it is because he doesnt know what is up there because he doesn't look in a mirror and see it.

We will leave in 3 weeks to go to Kansas City to start his hyperbaric and intense physical therapy. We will be there for 4 weeks. I will be posting videos, pics, and updates from up there on this blog.

Eric and I are anticipating great things in 2009!!!

Day 3-14

ok i'm continuing the story and trying to shorten it.
Essentially day 3-14 was a new medical problem each day. After they found his brain damage the order went something like this-heart rate accelerated and wouldn't go down so he started medicine that he would take until he's 1 (this is called SVT), had 2 seizures (quite breathing during 1), has blood pooled in his left eye (we couldn't see this from the outside, blood from a brain bleed had drained down his optic nerve and filled his left eye), and a little blood in the right. This was spread out each day.
By day 7 or8 things took a turn for the better. Christian begin breathing without assisted oxygen, eating more and got rid of his feeding tube, and opening his eyes.
We went home on the day he was actually due Feb 11. After being home for 1 day we noticed he wasn't eating as much and was a little cold. So I called the nurse hotline around 11pm and they told me to take his temp which was 95 degrees. That was the nurses cue to say "Mrs. Russell I want you to remain calm and call 911. You need to go to the hospital". Ok -remain calm. So we wrapped him in a ton of blankets, the ambulance came to take us to the hospital.

There is so much more to write in between all of that but I'll save it for my book I'm going to write. We stayed in the ER from midnight to 8 am and then went to the pediatric floor. They finally found that he had hypothyroidism. So we stayed there for 4 days then were flown to St.Louis Children's Hospital for 4 day stay. Nothing new was found or done while in St. Louis so we finally came home to stay!

All we knew was that we would have to "wait and see" what Christian's life would be like. So that's what we do. It's hard to say for sure with brain injuries what a child will be able to do.
The sky's the limit!

What?????

There were so many titles that I could have used for this entry but I think the one I picked says it all. This is something that happened to me one day while registering for something. I will not say where this happened but just know that it did happen and I didn't make this up.

Christian was with me and it comes up that he had a stroke before he was born and then that he was blind.
Lady:"does he run in to the walls at home"?
Me: uhh no he can't crawl or walk yet.
Lady: well i know this isn't the same but. . .
I'm thinking then just stop your story if you started it with "iknow this isn't the same. .
Lady: when i was little i had a cat and it was blind and it would run around the house and sometimes run in to walls. But it didn't hurt itself.
Me in my head: she's really telling me about her blind cat. wow. so this is what they mean about strangers saying things that they shouldn't say. and your right your blind cat is not the same as my son.
Me(out loud): ohh. hmm

Note to all people reading this-don't compare your animals to special needs children. She did not offend me at all but it would probably offend some parents. Actually I was thinking "i've got to blog this one".

Halloween

Super Christian!

I wish I could fly!

Christian was superman for halloween. I'm glad the cape hid the fact that his costume wouldn't button in the back!