There are four very closely trained eyes on Grace these days. We are constantly looking for any effects on her after having open heart surgery four weeks ago. Was that a gasp or yawn? Is she gaining good weight or is she getting puffy? Does her voice sound weaker? Is she crying because she's sleepy/tired/in pain/the Giants are playing terribly?
There are rarely any real answers. She's a five-month old girl with some pretty basic needs. She wants to be fed, held, loved and rested (although convincing her of the rested part is a little tricky around nap time).
Regardless, at the first sign of any hiccup in her recovery, and yes, sometimes the sign IS a hiccup, we almost automatically go to the Internet for any answers. It's probably the last place we should go because there is always some parent out there who went through the worst case scenario, and often posted pictures and videos to prove it.
We know the odds are in our favor that there's nothing to worry about with Grace, and our cardiologist confirmed that in our last appointment, but we don't trust the odds much anymore. You can't blame us since we bucked the trends when it comes to having a child with Down Syndrome, and a child with a serious heart defect. Our latest concern is some additional spasming that Grace has demonstrated. While there are some increased occurrences of seizures in children with Down Syndrome, it's still a small percentage of these kids that get seizure disorders. We're hoping the odds are with us on this one.
So we log on, and browse. For hours. And yes, there are some helpful hints out there online, especially from our fellow bloggers. But mostly, we instinctively want to grab our phone and call our pediatrician stat when we catch up on all the bad things that can possibly happen. Thankfully, our next appointment is tomorrow afternoon. And it couldn't come at a better time, since our question list is growing by the day. We're hoping she gives us the diagnosis we're praying for: hypochondria.
We hope to be a little less reactive in the future. We'll continue to be observant, but more important, we'll just be mom and dad. Grace has too many doctors, already.
You simply are champs! It is easy to question and wonder on your first baby anyway... multiply that by so much more in Grace's particular situation. It only shows how very much you love your litte angel. I hope your appointment puts your minds at ease. Grace is so blessed to have you two caring for her every need. <3
ReplyDeleteI love you and am praying for great results with tomorrow's doctor appointment. I trust tonight will be a restful one for you and Mommy and Daddy.
ReplyDeleteI agree that our Amazing Precious Gracie Grace couldn't find two better parents anywhere. The three of you fit together like peas in a pod. I will be remembering you all as you see the doctor tomorrow. Precious Gracie Grace, wear something dashing and fix your hair and razzle dazzle all of the medical people that you see. After all, I am beginning to think that you just come by that naturally. You certainly have razzle dazzled me!
ReplyDeleteIm hoping the odds are with you as well. Good luck at you appointment today.
ReplyDeleteI hope it this turns out to be nothing or what Owen had which was a "habit spasm" its a voluntary thing - he would hold his arms out stiff with lots of tension and hold it for seconds, rolling his eyes to the top of his head - it worried the heck out of me. The best thing I did was video it and take that vid to the Ped, he immediately reassured me it was fine and it is something that Owen has grown out. I think before he could move about it was just something for him to do. I hope that this is so with Gracey. www.born21ofmarch.blogspot.com
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