Another bad week!

Well, I think it is safe to assume that the current shunt programming is a big bust! Emily has not been herself this past week and she has been suffering from more headaches than normal. In fact, there has only been one day that she has not had a headache and on some days she has had two and three of them. Plus, these headaches last longer than normal and they really wipe her out. With her last adjustment, when she went from 100 to 130, we saw such a huge improvement in her personality. She became happy and full of life and just seemed to be doing so much better overall, but still having headaches on occasion. This time, when she went from 130 to 200, not only has she had more headaches, but her personality has changed again. She just seems down. It is like all of her happiness has been sucked out of her. It is an awful thing to see your child go through. It is like she is walking around in a fog all the time.



As I was sitting here typing this update, I got a call from Emily's teacher that she just had her second headache of the day and I need to go pick her up at school. It is only 10:30 in the morning. My heart is just breaking right now for my baby girl! I'll finish this update when I get back home.

We just got home from the school. You can just tell from the look in Emily's eyes that she is hurting. Poor thing. I just hate it for her. I don't know what is going to happen from here regarding further adjustments or tests. I'm assuming that we will need to reduce the pressure down from 200 to maybe 160 or 150. And although I don't plan to let Emily know this yet, I am also wondering if the doctor wouldn't want to also plan to tap her shunt. Back in December when she tapped her shunt, it appeared to not be working properly, but we weren't going to jump to do a brain surgery just from one shunt tap. I'm also wondering if some type of surgical procedure is just unavoidable now, whether it will be the ICP monitoring or ultimately another revision. I'll post an update again after we do see the neurosurgeon and I have some answers. In the meantime, we just have to do the best we can and Emily just has to cope with these horrible headaches.

On a positive note, Ethan did have his baseball assessments last week. He loved every second of it. He was a little in awe of being out on a real baseball field. He didn't realize how far apart the bases were. Ha-ha! And so when it came time for his turn at throwing and catching, he didn't quite throw hard enough to make it to the next base. But goodness, I wouldn't be able to either. And he has NEVER played baseball before in his life. In fact, until a couple of weeks ago, he had never even picked up a ball and glove. I was very proud at how well he did. And I was extremely proud of his batting. They pitched four balls to him. He hit two out of the four, but those two pitches were AWESOME hits!!!! And then to end his week, he had his final basketball game on Saturday. It was the best game his team had all season. And it was the best Ethan had played all season. He even got in there and got the ball a couple of times AND he scored two points for his team! But the best part of all was his defensive playing. He is the best defensive player on the team and he played such a good defensive game that I thought he was going to make the little girl on the other team start crying because she couldn't get around him for anything. It was kind of funny and kind of sad all at the same time. At one point, the poor girl stood there with hands on her hips and just looked up into the stands at her mom and got so mad at Ethan. Her mom was laughing and I was laughing, too. Ethan gets serious when he is playing defense. NOBODY is getting past him! It was so nice seeing him have such a love for the game and being so excited about it. He keeps talking about when he signs up next year, too. I can't wait!