Our Little Thrill Seeker
Charlotte LOVES being swung around, bounced, thrown, you name it. The rougher you are with her sometimes, the more she GIGGLES! I just love it! I think I laugh as much as she does. She is going to be a roller coaster fanatic for sure. (P.S. sorry about the funny noises on the video...I think it is because we take them with our camera, and they aren't the best quality?)
Just wanted to give everyone an update on how things are going in our world. Since we have come home from the hospital, Charlotte is doing much better and has remained healthy!! She has been taking much longer naps, probably because she is just trying to get caught up. But mainly, she has been eating very well. My greatest struggle right now is just trying to juggle my work schedule, as infrequent that I am there, believe it or not, it is a problem. Especially since I had been planning on her being able to go to daycare when I agreed to work some of the days I am scheduled. Makes things a bit complicated. I am also limited on where she can go because of how crucial it is right now to keep her absolutely healthy and well. There is just too much going on in her little world for a common cold.
I am anticipating her surgery on Friday, but honestly, not much can phase me until the heart surgery is over with. It has about 99% of my focus right now, even when I don't realize I am thinking about it, I am. I think part of the hardest part about her surgery Friday, will bring the realization that we are doing this again in 2 weeks...seems like a short distance away, and I am anxious about the moment I have to let her go. As far as the eye surgery goes, I just hope that it works, first of all. And also, that she is not in too much discomfort afterwards. I know it is going to look pretty bad for a few days. I am not sure if I can prepare for that?
I also recieved a phone call from the Geneticists office today. Looks like the CMA (chromosome micro-array) test that we were having done came back with some information. They noted that chromosome 13 of Charlotte's is changed. They didn't tell me specifically how it differs from the norm. They have searched their database to see if any known genetic malformations match what she has (the cerebellar hypoplasia) but nothing has come up so far. They are going to continue to search the known information about chromosome 13, and are going to contact the research lab in Boston to find out if there is any information that they are aware of that just hasn't been published yet. The results definitely mean that they have to test Chris and I and do the same test, the CMA. They are looking to see if either of us has that same malformation. If one of us does, then likely, it does NOT explain Charlotte's cerebellar hypoplasia. If we do NOT have the same mutation, then maybe it is a clue...so. The testing for us will take another 4 weeks to come back. We are going to try to get it done before she has her heart surgery. At least it is free for us to do it :)
Here are more pictures from the other night, just goofing off with our girl. She is working really hard on cutting her top teeth. I think the top left will come in first. She is also trying to crawl...she can crawl backwards....Ha Ha. I am serious! She does better crawling backwards than forwards. Crazy kid?! She is sitting upright much better, but still topples over a lot. We just can't leave her by herself sitting up much because she topples and conks her head. Sometimes she even forgets what her center of gravity is, but who can blame her? I think it will just take time. I know she is delayed, and will be for a long time probably. But...I believe in her. I believe that she will learn to walk someday. But, we are definitely on Charlotte's time. Sometimes it is hard to see other children younger than her doing so much more than she is. I wouldn't say that I get jealous, but I just wonder to myself, what would that be like, having a baby that just learns how to crawl? A baby that you don't have to teach them how to shift their weight, and hold themselves up, and play with a toy without falling? Then, I stop myself from wondering those thoughts, because Charlotte is meant to be who she is, and how rewarding it is when she does learn something new. I remind myself how lucky we are that she has come this far and is so strong willed. I just want her to have a wonderful, full life. I want to do everything I can to be sure she can achieve all of her goals. I want her to feel equal to her peers, not different. The only way I want her to feel different is because of how great she is, knowing she is a miracle.
I know many of you say that when you read these blogs that I bring you to tears...don't think you are alone. I guess, that when I write, I write from my heart. I write just how I am feeling at that moment. I don't edit much, I just let it come onto the page. Thank you for trying to understand me and the struggles that I am going through. For making our family feel important and cared for. For doing this with us...
Teaching Charlotte how to play Mario Cart! Go Cards!