Frustration

Sam is frustrated. She didn't want to go to school today because she feels so left out. She went to Cedar Point yesterday with the class but something must have happened. I'll ask her about it in a few days. I'm frustrated with about 5 things. I'm 44 now..I guess that's ok. I have no money, that's not ok and I'm sick of struggling. Sick....I blame Chris. I am feeling very lonely these days. I blame Chris. Nikolaas called me today. He wants to file for social security, his eyes are that bad. It's horrible. I can't believe I have a son who may be blind one day. I'm sick of being frustrated for Sam. There's just nothing I can do to make her feel better. I talked to her endo today, we're going to increase her night time cortef to 7.5, since we increased the morning dose, she's gained 7 lbs, which is awesome. But she's tired all the time again. Since it was originally increased, she's gained about 10 lbs, so we think maybe she just needs a bigger dose. So we'll try it and see what happens. She's worried about school next year. My house is hot, I can't afford to buy a big a/c for my living room window which is really big. I have about 20 dollars til next Friday and no gas in my car. I know no one reads this but it makes me feel better to journal what I'm obsessing about. Alec is plugging along, he starts a new anti depressant on Friday. No progress on food. He's so small. Caitlin came home for a few days and we all met Nik downtown yesterday, so that was nice but he was kind of crabby and I'm really not sure whats going on with him. Ok, I'm done bitching for the day. We leave next Friday for Camp Sunshine. I think it's going to make me feel better to be there, it's just an awesome place and we are going to meet Mary Alice and her daughter Lizzie, which will be the most awesome of all....Sam is very excited.

Sunday

We had a good day today, I worked shift supp last night but got up at 1pm. Then the kids came home from Nana's and we went on a picnic at Elizabeth Park. Then we came home and I took a little nap. Wanted to get some housework done but I'll do it tomorrow. Sam's been feeling weird all day, says her legs are jumpy. She's asleep now but really really wants to go to school this week, her last week. Cedar Point is on Wednesday, which is also my birthday. Caitlin is coming home and then on Wed, we're all going to dinner at Xochimilco's, the best Mexican food this side of the border.

Alec is doing ok....he helped me with some yardwork yesterday but was not happy about it. He went swimming and DJ spent the night so he had a good weekend. Ok, talk later...11 days til Camp Sunshine!!!!

Room 576-2

Sam's doing ok I think. Her pressures were spiking all night but they seem settled right now. Dr Sood just came in, he doesn't think it's her shunt. He's going to have neurology come in to talk to her and re-examine the headache issue. I don't know if it's her shunt but I think it's definately her hydro that's causing the headaches. It sounds like he might do another MRI, as her shoulders and neck have been hurting. Maybe the chiari has come back since her valve is set so high. We'll find out later, I suppose....

Number 33

Well Sam is having another surgery next Tuesday, she's still not feeling well and they've adjusted her shunt as high as they can. She's really bummed out, she's missing her 8th grade dinner. Nik is coming home tomorrow for a few hours and Caitlin is coming home in 11 days. For my birthday!!! I'm so excited....Ok, I have to work this weekend....Blah