TEAM CHARLIE CLAIRE: A picture is worth...

It is super easy for me to get ahead of myself sometimes, OK, let's be honest - most of the time. I work with Charlie Claire every day on her physical therapy and sometimes I am so focused on working on things she hasn't quite gotten the hang of that I don't acknowledge the things she is doing. I am so focused on getting Charlie to reach for an object and put it in her mouth that I didn't relish in what a huge accomplishment it is for her to be sitting or that peek-a-boo is one of her favorite games right now and when people play it with her she laughs HYSTERICALLY! These are certainly things she wasn't doing before her surgery and things that probably would not have been possible if it weren't for that surgery. While Jackson is pretty much following that pretty little developmental milestones chart that is in every baby book to a T, Charlie Claire is going to do things on her own terms and in her own time.

I have officially gotten to the angry stage of our current seizure situation. I am not angry at C's surgeon or anything along those lines - just angry that this sweet baby girl potentially has to go through another surgery. I know that if surgery is what has to happen that Charlie Claire will rock it out just like she did the first two because so far in her almost 10 months of life she has rocked out everything else that has been thrown at her. I don't like that it will take us almost another month until the lamictal gets to a dose that could potentially help these episodes that CC is having. I am thankful that these episodes are not having a negative impact of her development but I just wish they would go away.

Back to me getting ahead of myself...I am a planner and I would prefer to know NOW if C is going to have to have another surgery, I am not a fan of the waiting part. I believe someone is trying to teach me patience. I trust that in time whatever is meant to happen will happen.

When I start to get ahead of myself I think it's important to try to bring myself back into a normal range. I went through some pictures from the past year to remind myself just how far we have come...

Welcome to the world Charlie Claire!

Before the word seizure ever entered our vocabulary

At 3 days old C started having episodes. NICU @ VA Beach General Hospital

Charlie was transfered to the NICU at CHKD in Norfolk for her very first EEG and MRI. Last night at CHKD!

In December 2010 we learned Charlie was having "silent" seizures and she was admitted to the PICU at CHKD in order to adjust medications and monitor her on a continuous EEG. This is when we learned she would need surgery.

CHKD PICU

4 hour Video EEG at CHKD in January 2011

Charlie Claire was sent to VCU Medical Center because CHKD could not perform the surgery she needed. EEG in February 2011, thank you steroids for those cheeks and that belly!