Tuesday, December 21, 2010

WE'RE FULL ON CRAWLING!!!!!!!!!!!!!!

I know I've mentioned somewhere that Olivia had started the beginning stages of a crawl probably around October sometime.  She first looked like a mermaid - doing the crawl with her arms and hands but motionless from her waist down.  It slowly evolved into a very flat commando crawl, and from there into a more active commando crawl.  The steps have been excrutiatingly slow.  But now... HOUSTON! WE HAVE A CRAWLER!

Every day we'd work with her on her "all fours"... putting her in position over and over again, with a hand under her core to support, and at the same time try to move her hands and legs in the right sequence.  Our PT explained to us that we needed to create the neural pathways for the right movements long before she could do them herself, and the more we did that the easier it would be for her to crawl.  And to be honest, I would have to say that it was really my mom who did the majority of this PT daily as I often took care of other things. 

When we went to Florida to see Dr. Miller she prescribed carnitine for Olivia.  It was something I'd asked about and it seemed it was time to add that supplement.  She began taking it on a Sunday, and she crawled Monday 3 times ON ALL FOURS, about 2-3 feet each time at her morning PT session.  One of those times she had a choice to crawl to a toy, to mom or to me.  She hesitated and thought, looking back and forth, and then deliberately started off toward me very slowly. Then later in the afternoon, she crawled about 5 feet from her area over to Amelia's play area.  About an hour later, Amelia and I were both in the kitchen at the same time and all of a sudden Amelia started shouting, "Look, Mama!!  Livia is crawling! LOOK!"  I look up and see Olivia has crawled from the living room to the kitchen to hang out with us. 

Today she has been crawling everywhere.  It's like she finally realized she could get out past the area where her therapy and toys/tools are. 

Carnitine seems to have sharpened her in the way an out of focus camera suddenly sharpens; the change is hard to explain but definately there.  She has more energy, more tone, like a light just switched on.  I don't think the crawling is just the carnitine, but I do think it had a lot to do with pushing it to finally click.

Not only is the crawling a big deal, but I have to say this...

SHE CRAWLED TOWARD ME!  memememememememememememeeeeeeeeee!!!!  and then she wanted company and crawled toward us in the kitchen when she was surrounded by endless amount of new toys!!

To put this in perspective:  For over a year, my child has shown very little particular preferences for anyone or anybody, with the exception of my husband and men in general.  She seemed to be slightly more active and alert with men.  She didn't cry for us, have seperation anxiety, show likes or dislikes with any great intensity.  We could sort of gauge now and again how she might be feeling by her very slight reactions, ones that most people would most likely miss.  She has never held her arms out toward me or in any way indicated that she knew I was her mother other than recognizing my voice and briefly watching me if I was talking and entering a room she was in.  When she was sick over the Thanksgiving holiday, she called my name one night, slowly and one time.  It sounded deliberate, but I still couldn't be sure.  Not only does she have PWS, CAI and temperature dysregulation to deal with, she was 2.5 months premature with a very traumatic birth.  I'd be lying if I said I haven't wondered about her cognition. 

Today we had more great news - we received our 1 year evaluation from EDIS (Education and Development Intervention Services).  She is now 16 months old.  Olivia scored in the middle of the normal range for her adjusted age in cognitive skills, and below normal for all others, especially motor skills.  Susan told us that it wasn't a predictor of the future or commentary on the past, just where she is currently.  But currently, she's NORMAL cognitively!!!!!!!  Again, a huge worry lifted off my mind with the apgar scores of 1, 1, and 4; 30 minutes of CPR and 3 chest tubes for collapsed lungs immediately after birth.  We've never been able to ascertain how much oxygen she lacked for how long during that time.

My daughter knows who I am.  And she prefers me to a toy :)

9 comments:

Allegra said...

What a beautiful event. I'm so happy for you. You're strength and outlook are an inspiration, and you so deserve for her to crawl to YOU!

allegra

Ali Foley Shenk said...

WOohooo!!! Go, Olivia!! It's a wonderful thing. We really saw Dean's personality just BLOSSOM once he was crawling. I know you'll get to see more of that with your sweet little one!

Janet Gulley said...

Hooray!! Go Olivia! Congrats Mom! And so begins the game of, "Where's Olivia?" or maybe, "How did Olivia get into ____" Enjoy!

Lori said...

I have to admit that I teared up and cried when I read this. Maybe it's the pregnancy hormones, but I prefer to think it's the pure joy of knowing the struggle she has had and being able to watch as she grows into the beautiful child God wants her to be. I know you are so very proud! We love you guys and can't wait to see you this weekend!!!

Mandy said...

HOORAY! I am so happy for Olivia and YOU! Of COURSE she chose you! You are her mommy and she knows it <3

Cori said...

This post brought tears to my eyes!! Kira is on carnitine too!

Laurie said...

Is she really, Cori? That is so interesting. What is she on it for? Did they test for it first? I was so bummed when I found out you were out of town over Thanksgiving. I really wanted to meet you and the kiddos! Next year. I'd love to compare notes sometime.

Mary said...

Wow, such great news. We've still never done carnitine and I'm wondering if it's too late. Oscar was around this age when we realized that his cognition was promising. With the lack of facial expressions and low tone we had no idea what was going on in there. Enjoy your crawler.

Laurie said...

Mary, I know exactly what you mean about the cognition. Dr. Miller actually had her tested for carnitine deficiency, although she suspected it anyway because of livie's behavior.