Tuesday, April 1, 2008

Good stuff

I thought today might be a good day to catch you up on Zoey. You might say isn't that what she has been doing the last couple weeks? I mean, really catch you up , from her teeny tiny toes to that darling  little head of hers. All in all Zoey is doing amazingly well, all things considered. She receives O.T. (occupational therapy) three times a week. Jacquie, her therapist is incredible. Sometimes when Zoey tires out early, it becomes my therapy session. She has become part of our family, she is family. Considering  Zoey had to lie on her back for 5  1/2 months and could do not one bit of therapy till after heart surgery we all agree she is doing more then we thought she would do at this point. Well ,maybe not more but we are impressed. Seeing that seizures have also further pushed her back.She is one determined , hard working child that has found a way to do things in Zoey time. One thing we love to watch is her rolling like crazy across the floor! I often have to run and rescue her before she rolls onto the tile. She can sit supported and briefly unsupported. Her back is super straight and strong. You have to remember.... Zoey had a stroke, so her entire left side is out of commission. Not because it is not as strong as her right, it is referred to as disregard . It is as if she does not know its there. And boy if you force her to use it she is furious. It mostly is her hand that we struggle with. For instance, if you place an object in her left hand she IMMEDIATELY transfers it to the right. Not bad, uh? It will be one of the biggest things we struggle with in the future. She loves balls. All sizes. Rolls them back and forth with her little hand. She loves music. Whether it is in her CD player or being sung to. Yes, even my voice! She loves studying peoples faces and she does have her favorites...... my dad, her daddy and her sister Caitlin that can make her smile like no other!  Me however, she sees me and I am the "feed bag" so usually its an arching of her back and a little grunt that equates to "feed me now"! Zoey is also an absolute snuggler! She burrows her body into you and would stay like that forever if she could. I think that is one small up side to her size and development versus her age. It is as if she is a 5 month old and I love that. We can hang on to the baby stage a little longer. Sounds strange in a way doesn't it? Zoey does not make alot of sounds, a few here and there. That will slowly come. She nurses like a champ. Something she just "picked up" after surgery. Boy am I glad I pumped all those months prior to surgery. We are beginning to teach her to use a cup.It is a special therapy cup. No lid.It has cut out side and she really does a great job with it. I am so proud of her. She was eating baby food 3 times a day. Great at it in fact but for some reason she has acquired an aversion to it as of late. The current medication is suppose to increase appetite so I sure hope it picks back up. She does still have her g-tube(feeding tube) but we just use it for meds now. It is a good insurance policy for now till we find our way through some of this stuff. Lets see, what else can I share without boring you to death? Oh, did I mention she can turn pages in a book? No really! She PURPOSEFULLY turns the pages as we read books. It is truly remarkable. We are in awe of it every time. Well I guess thats all for now. There is more but I will save it for later. I just thought it was important to let you have a glimpse into Zoey and not just the Zoey with all the medical issues. We are determined to not let the bad stuff over take the good stuff. We are determined to not let all of Zoey's medical labels define her as a person  There still is good stuff too. I need to pause once in awhile and be reminded of it. I do Zoey a disservice if I do not acknowledge that there still is good stuff each and every day and remember to have faith in more "good stuff" to come.

1 comment:

Dawson said...

Hi I saw your comment on Reagan's page. Our son was dx with I.S at two months old. We have been following Reagan's story and just read your blog. What a sweet baby you have. She will be added to our prayer list.

Jeff and Allison