Well, our precious little girl is getting a G-tube tomorrow. All though we have been preparing for weeks, when we got the news today, I have to admit, I held my breath. I feel I've been holding it ever since. I know this is the best decision for her, but I can't help but mourn the loss of her perfect little unblemished tummy. :) This is minor surgery but... it's still surgery. Her doctor assured us that the risks are extremely minimal and recovery time is quick. So, we should hopefully be heading home by the beginning of next week. Now, that's the part I can't wait for. It makes me cry just thinking about it.
We find ourselves entering a new world, the world of parenting a special needs child. A world, I may have completely disregarded in the past, maybe only experiencing a brief feeling of pity for the parents of a child that was so different and time consuming. I have to admit, I've always felt a bit awkward around special needs people/kids, not sure how to act or what to say. So, all though up until this point she is precious and seemingly "normal" I understand the awkwardness of not knowing what to expect. So, we have decided to keep you abreast on all that we know about her condition.
Because her chromosome abnormality is such an anomaly there is little to no literature on it. We are able to see some similarities to Chromosome 14 trisomy. However, it is not exact and by no means as severe. Praise the Lord. So, we will be posting pictures of her tube, I'm sure, so that you can be familiar with it. The good news is, it really shouldn't effect you holding her or playing with her. It will just tuck into the tab on her diaper so that it is secure and has no chance of being pulled or tugged. I'm sure I'll be able to explain it further once I have lived with it a while and will do so then. If you have any questions when you see us, please feel free to ask.
We also don't want you to feel like this is something bad that has happened to us. This is the perfect gift of a precious little girl, that is beautiful and ours...ok God's too. :) We couldn't be more in love with her and more grateful for her. In fact our kids are the BEST thing's that have happened to us!
Would you please pray? Pray that the surgery goes well tomorrow(Thursday) at 2:30pm. Please pray that she won't need this darn thing for too long, and of course pray for God's will and timing in getting us home. I know God will guide us and give us what we need, so that we can provide for her.
Thank you and we love you to pieces.