Back in Spokane...
Okay, so I did a fair enough job updating you on my portion of Monday's neurosurgery appointment, now to review Elisabeth's half.
This was just a regular check-up for Elisabeth, so we weren't expecting anything out of the ordinary. That's why we were surprised when Dr. G checked the setting of her shunt to find that it was totally off.
"How did that happen?" I asked.
"Has she hit her head at all or been around any magnets?" he asked.
(uh oh)
Okay, here's the truth: Elisabeth hits her head all day long. She sits and literally pounds her head as hard as she can into the floor. And not only that, lately she's started balling her right hand into a fist and pounding on the side of her head - right where her shunt is placed.
So apparently she did it hard enough at some point to actually change the setting of the shunt, which in turn meant that all the CSF in her head wasn't draining as well as it should...which explains why we've had a bit of a grumpy Elisabeth on our hands lately (pressure in her head).
It's funny, because the next day when I picked her up from school Elisabeth's nurse said, "She was like a whole new girl today - we had so much fun," - and I hadn't even told her anything about the setting of the shunt being changed; she just honestly saw a difference.
So, there are two lessons to be learned here:
a) I need to be diligent about making Elisabeth wear her helmet. I always imagine how horrible it would be to wear a helmet all day, so often times I leave it off, but she's proved herself untrustworthy. So, I told her, "Elisabeth, I'm sorry, but I'm going to have to helmet you now. I can't have you undoing your shunt setting all the time, can I?"
b) If Elisabeth starts acting grumpy I need to get her shunt checked. Period.
So other than that things looked great. Her brain looked pretty much the same (small and damaged) and there was plenty of tubing left in her belly to last her a few more years. Of course, Dr. G said that if he has to do a shunt revision anytime before then he'll go ahead and add more tubing at the same time. But let's just hope her shunt keeps plugging away, okay?
[Elisabeth getting off the school bus yesterday. She was wiped out. She had several seizures before school and four seizures at school. Yikers.]
In other news, we went swimming last night. I had one of the best times of my life because when I was in the water I actually got to hold Elisabeth. I haven't got to walk around with her in my arms in months! (Unless you count that video we shot the night before my surgery...lol!) The water made her weightless in my arms and she and I walked around the pool for an hour while she splashed and splashed. Of course then she had a massive seizure (poo) and the fun was over. So I sat on the top step of the hot tub and she snuggled in close and fell asleep. I was a happy mama.
And finally....a picture of me in my brace (as requested by my mom who lives far away from me and wanted to see what it looked like). It's not so bad really; who knows, perhaps I'll start some new fashion statement.
p.s. I forgot to tell you! On Monday Dr. G gave me the go-ahead to start lifting up to 20 pounds (Elisabeth is 37lbs, so she's still off limits) and to start moving a little more. And yes, I asked specifically if I could make beds and he said 'yes'. Things are looking up!
