Friday, December 31, 2010

It happened when? In 2010 (graphic...warning)

Im not even sure how to accurately convey all that went on in 2010. I often think during the times I am telling our story people must think I have one very overactive imagination. I only wish that were the case.

I'm ending this year the same as I started. Alone with the Xmas lights on, drinking hot chocolate. My baby is with her daddy right now (hopefully sleeping). My heart and thoughts are all over the place. It seems every year I say that was the most trying year. I think this year definitely wins that title. If you had told me on Dec 31 2009 that a mere six months later my daughter would undergo the biggest, most radical surgery one can have, and come out of it smiling like she didn't just have half of her brain removed I would have thought for sure you were smoking.

But, that was 2010. Surgery. So much happened this past year. But really, it will be known as the year of the surgery. The life changing, life saving, life altering, traumatizing, most radical, amazing, glorious, miraculous gift we could have ever been given. It isn't often that you get excited about having half of your childs major organ removed. But I was. I was ecstatic actually. Because she was a candidate. Sadly, many are not. So May 26 after about 6 hours Dr. Asano came out to tell us how things were going, and to show up the pictures of her hemisphere. My daughters little brain, that never even was able to develop because of her stroke. Like Shel Silverstein... a big missing piece. But we found the piece that fit in Detroit with her surgical team. We had a rough go for a few days and she ended up needing a VP shunt...which of all the things this year that has been the most problematic.

Since Oct 28 she has had 3 emergency shunt revisions. One colonized atypical staph meningitis. A UTI that grew pseudomonas. And currently, as I type, Micro at Alb Med is keeping watch over the gram positive cocci growing in pairs and rods that seem to indicate there is some variety of staph or strept infection. That is really just a small sampling of the crazy that has been this year. With only 57 minutes left of the decade, I could easily be up for hours writing about all of the goings on in 2010. But I wanted to be in bed an hour ago, so I'll wrap this up quick I think. (there is a slight chance at the 48 hour culture mark we could get admitted so I need sleep NOW)

This year has been a roller coaster. Joy of meeting new friends, new children who share the same journey as Charli, new parents who understand how frazzled I am and totally get it. Sadness at the lives lost this year.....Jakey, Brex.. my school friend Jared, Todd, most recently the week of Christmas my Uncle John. Gratitude for the amazing dr's that are involved in Charli's care...specifically her pediatrician who if I didn't have I don't know how I would function. He is my angel. I trust him more than anyone in the world, and he knows my daughter quite possibly better than I do. The neuro and nsurg team at Detroit is beyond phenomenal. And an even bigger surprise was find a neurosurgeon who was at the Med Center who not only knew what he was doing, has a kind heart and personality and an amazing amount of patience, and wonderful bedside manner. I have nothing but the best of things to say about Dr. Adamo and the neurosurg team at Albany Med. It was a blessing we found him (or landed in the ER and he happened to be on that day) because he has saved the day twice with two of her revisions.

Sadness. Lot's of sadness. Sadness over loss. Sadness over seeing my baby girl fight so hard everyday of her life. Seeing her eyes pleading with me while they try for the umpteenth time to find a line. The sheer horror I felt watching her vomit from the hydrocephalus after her surgery and the pain she was in. Sadness because my family fell apart. Not for any one reason. Many, rolled into a newly wed couple has a baby born with a massively complex medical history. That is enough to tank the most solid of marriages. Pride- in watching Larry grow this past year with Charli, seeing him get more picking out Xmas toys this year that had therapeutic value instead of just buying toys. That was huge to me. I'm so proud of who he is for her. And we are finding our way back to being friends and doing it all for her together.

Anxiety. Cuz with shunts (and seizures) comes anxiety. I've spent many a day analyzing her behavior instead of just enjoying being with her. That is something that will change in 2011. I'm going to let her be. Just be a kid. Not a kid that has a catastrophic form of epilepsy. Not the kid that had a stroke. Not the kid that is missing half of her brain. Just a kid. A kid that is going to do Kindermusik, and go to play groups, and have fun. Because Damn it she deserves it.

There is no greater thing in any day of any year since July 1 2008. That was the single most amazing (and again, terrifying, chaotic, catastrophic) day of our lives. But it was the day my life started. It was the day my mom hat was on, and it soon merged with advocate mom hat. Mom. still seems weird. I forget sometimes I am a mom because I so often function as a nurse or medical professional. But that girl. That precious little curly headed girl is the most amazing thing in my life. And I will make damn sure that this year is good to her. Because she has made my life amazing by being in it.

So, while I didn't get out all that was in my head. I feel like I can go to bed now. If we get admitted tomorrow I'll need all the sleep I can get now. Good bye 2010...I have mixed emotions about you. Let's see if 2011 will treat us right from the start.

Happy New Years everyone. Be safe, happy, and healthy...and seizure free to all.

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