Wednesday, February 29, 2012

Back to the 313

So it's been a LOOONG time since I've blogged. I guess for a lot of reasons. But I feel it's time again. We have had a LOT going on, so much going on in my head.

I guess I'll start with now and work my way back. Slowly. There is a lot to talk about.. first...before anything.. I need to talk about the passing of Charli's birth buddy, her first friend in life... Hannah. Hannah was such a beautiful amazing child, and she and her mommy have given me strength and inspiration from day 1. You can see her photo book from the balloon releases done all over the country here. Hannah, we love you. Our group has also had several other losses in the last few months, and it's becoming quite hard for us to take. Please, just say a prayer for all of our sweet kiddos, the ones here and the ones who have their wings and our watching over us all.

So, my girl. She had a rough evening. I had to give her codeine...she was screaming and crying and grabbing her head, pulling her hair. It could be just the weather (we are having our first actual snow storm finally this year) or it could be something else. I'm just hoping to God that we can get thru the next few days and make it to Detroit. We are headed to Detroit because about almost 2 months ago now Charli was hospitalized for what seemed like classic shunt failure/ICP change. Scans negative..no big surprise. They had to give her Versed and Fentanyl in the ER plus Zofran. When we got to the floor (after arriving in the ER via ambulance from a frantic 911 call because she had been inconsolable for hours and then vomited) she started have very bizarre neurological changes. She was hyper sensitive to light, noise, had a very strong prominent ATNR to the left, was moving her right arm in strange manners. Very much like what she used to do when she would seize. I kind of wrote it off as side effect from the meds, pain meds have a tendency to make your brain hyper excitable. But something that occurred about a week before this hospitalization (same shunty type behavior) had an accompanying tone change on her right side that didn't resolve. Since she went back to school they had noted some changes on the right side as well. So we are headed to Detroit to A. rule out the possibility that she had another small infarct and that is why we have this tone change and B. hopefully figure out a way to deal with this constant shunt issue. Every ER trip to Alb Med is getting worse. Charli was terrified of everyone when we were just hospitalized, and I can't keep subjecting her to this bullshit when they dont really have a clue as to what they are doing.

I'm getting nervous. I realize that if she had a TIA or a small stroke it's already done. Nothing to be done about it. But I don't know if I'm ready to hear it or not. I'm not evenly remotely recovered from ...anything! Plus the potential for this being something vascular and needing intervention exists also and that scares the shit out of me. She hasn't had an MRI in I don't even know how long...and I get very nervous when she has them. And they are doing an MR Angio as well. We are going to see Dr. Chugani and Dr. Sood, and if need be I suppose we can get in to Dr.Chitlur quickly. She has the history of the clot in the transverse sag sinus, which is what makes me nervous as hell. So that's why we are off to Detroit this weekend and next week.

Overall, aside from the shunt stuff she is doing AMAZING. Her language is astounding. She started school in September with 43 words, and she easily (I've lost count) has over 110 words and several 2-3 word sentences. She pretty much says at least one new word a day. Usually more. She is doing really well in her gait trainer at school, she is recognizing and saying her friends names in circle time. Eating is still an issue. Gotta figure out where to go from here with that. She is doing a hell of a lot better than ever, but I have to get her off the high sodium lunchables and figure out a way around the SPD picky issues.

Well, that's about all I can muster for now. I have a lot in my head, but it's overlapping and making my head hurt now.

I'm going to go sleep while my girl is asleep. (in her BIG GIRL bed!!!!!)

I'll try and get on her more often. Sorry I've been absent for so long.

Love you all.

No comments: