Finally!!

Alex is BIGGER than Lauren!!! by 2 whole ounces! yay! I never thought this day would come!

What a difference a year makes!

This link was a video that was taken on this date last year...when we thought Lauren looked SO much better... now look how far she's come!
She saw endo today and her thyroid level is right where it should be. Her current weight...22pounds 11oz. She was also fitted with AFOs this week to help her stand more. SHe is currently off the vent 45 mins 2x a day and we'll go up to a WHOLE hour on Thursday!

Lauren in April - Nicholas S. Key

The HOPE that Easter brings!

One of Lauren's great nurses MADE this hat for her!



Holidays are strange when kids are little and don't really know what's going on. I took Alex to two Easter egg hunts. We saw the Easter bunny. I'm too paranoid to let Alex actually touch the Easter bunny. I like to call him the "RSV bunny". The best part for Alex was to be around all the other children. He loved to children all running around him. We got a few eggs which were all full of hard candy that kids his age would choke on :( Not that Alex wants to put anything in his mouth anyways. Just a few pick of the twins Easter! Oh, and the top pic is where I noticed that Lauren has my EXACT hair coming in!

Grandma comes to visit!

My mom makes the trip from sunny Florida to Indy about every3-4 months. She got to see HUGE changes since she was here over Thanksgiving...Alex walking Lauren sitting up. She even faced the cold wind last Saturday to watch Alex in his first Easter egg hunt!

Blessed.

I can remember about 9 months ago we had a meeting with all the people taking care of Lauren when she was getting ready to come home from the hospital. Everyone was there: PT, OT Vent doctor and her nurse, the nursing agency, social work etc, etc. We told them then that we had gotten in the wrong supplies for Lauren. We got in a part for her for when she was off the vent, not one for the ventilator. I remember the nurse saying "just keep it for when she's off the vent in the future". At that point, it seemed that was as far off as retirement. It seemed like we'd never get there. That was also a day where we discussed the "grim outlook" on Lauren. It was that day where they stated we might "see her die in front of us". It was that day we signed her DNR order.
She's come a LONG way from that day.
Last week We. Started. trach. trials.! This is where she's off the vent (but still on oxygen) so she does all the breathing on her own. We're starting at 15 mins twice a day and get to increase that by 15 mins every 5 days. We tore up that DNR order.
Lauren went upstairs for the first time. She's gone on her swing. She's a happy baby.
Lauren also had a appointment with a head doctor to look at her odd head shape. He said it was fine and should not cause brain problems in the future.
Lauren has also started taking more by mouth...in fact, she likes it WAY more than her brother does!

My Montage 4/9/11 at OneTrueMedia.com

Make an on-line slide show at www.OneTrueMedia.com

Milestones!

A long time ago I tried my hardest to erase any knowledge I had of developmental milestones. Sit up at 6 months, walk around a year, blah, blah blah...Months come and go and come and go and I see very slow progress from either baby.,. then all of a sudden...HERE COME THE MILESTONES!
Lauren ready to crawl and Alex is walking!!

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Bring on the warmth!

Alex is back to his old self. In the past few days he's been standing by himself for about 10 seconds or until he realizes he's not holding on and freaks! We've been working hard on stacking and he's got it! He gets SO proud of himself when he knows he got it right! Oh, and in other big Alex news he signed "more" for the first time today! He wanted "more" of his fav TV show and "more" on his swing!!
Lauren is back to her old self too. She's sitting up longer and longer everyday. She now gets up on four point (the crawling position) for about 30 seconds with NO help! We got in her Tumbleform therapy chair...just when you thought the house looked like babiesrus exploded in here we added another chair. It sits her in a really good position even though she is almost at the point she doesn't need it...If only we had this a year ago!