CHD Awareness Week

Today kicks off CHD Awareness Week and we couldn't be more proud of the little girl that made us aware of what this week was all about. One out of every 100 babies is born with some form of a heart defect. That's about 40,000 babies each year. Not all of those families are as lucky to have the outcome that we have had and we are thankful every day. We are aware that things could have gone a different way for us and at times almost did but for some reason we were lucky enough to be given a baby that was never willing to give up the fight. To this day she still fights me on just about everything I want her to do. I know that that fight is what got her through the toughest time of her life. Everyone says that she looks like me or acts like Jay or is stubborn like the both of us (yes, that's right we're both stubborn). But if it's that stubborn streak that is going to get her through hospital stays, surgeries, etc. then I am happy that she is like us and we were able to pass that along to her. At times I wish she wasn't as stubborn when it comes to things like eating, standing, changing her diaper, getting dressed, doing her hair. The list goes on and on. Don't let the pictures fool you. She's not always that sweet and innocent. I just choose not to grab the camera when she's in the middle of a fit or pushing my hand away as I'm trying to feed her and she doesn't want to eat anymore. Or when Early Intervention is here and she doesn't want to do what they want her to do and she throws herself on the floor. I usually just laugh to myself because I know that behavior is why she gave so many nurses and doctors a run for their money.

Every 6 months Early Intervention does an evaluation to see where she is developmentally. Molly sleeps like a teenager. Some days I think if I'd let her sleep until 10 she would and if I have to wake her up she's a witch. The assessment was at 9am and of course I had to wake her up at 8:15, feed her and dress her before they got here. That meant no time for TV except for when she was getting dressed. Molly not having her TV is like me not having coffee. So needless to say she wasn't cooperative at all. She bangs 2 blocks together like it's her job. Do you think she'd pick up the block. NOPE! They wanted her to get her toy from under her blankie. Do you think she'd pick up her blankie. NOPE! They wanted her to roll over which is her form of transportation. Do you think she'd roll over? NOPE! I say her name about 600 times a day. When I called her name do you think she'd look at me? NOPE! I'm telling you...STUBBORN!!!!!!!!!!!! She just wanted me to pick her up which is not like her. The only time she wants me to pick her up at home is when she's stressed. I guess Lulu wanted to help her out because they had put some of her puffs onto a board for her to pick up and see how her fine motor skills are. She picked one up and Lulu walked by and ate the other 3.

So I don't know where she scored and to be honest I really don't care. They are only scoring her off of what they see right then. They aren't with her 24 hours a day like I am. They don't see her jabbering, rolling all around, standing, playing in her walker or bouncy seat. I told them that she's spiteful and won't do what they want when they want. It was pretty much a waste of 2 hours out of my day. It's just a little discouraging when I think we are making all of this progress and they are going to come in and take the wind out of our sails. We are going to get the results of the assessment tomorrow. I'm not going to lose any sleep over it and I can promise you that Molly won't either. Once I get the results I will update her blog. Until then...