Neurofibromatosis

Neurofibromatosis. This is the new word in my house. This is the word that hangs over us all like a cloud, a cloud of uncertainty. Cafe Au Lait, sounds like a delicious coffee beverage, nope wrong about that one. Brandon's angel kisses, aren't angel kisses after all. Now we begin the gauntlet through specialists, and doctors, and tests.

Friday, Saturday, Sunday and some blabbering

Friday we ordered pizza, nothing exciting there. Brandon made it to gold level in school. His levels are silver, bronze, gold. He's worked really hard for it, he wants to go back to Toledo Blade instead of being at his special school. It's a goal he is working towards, and I think he will be back at him school for 3rd grade. I am so proud of how he is excelling in school, I didn't think it would be possible for quite a long time. He's made so much progress. Sometimes it's hard to see how far he has come when you live in it everyday. Once in awhile you can sit back and see the change, you think back to how things were, and how things are now. Maybe it's us that have changed, maybe we understand things more in depth, and know Brandon better than we did before. I'm not sure which it is, but I am grateful for the progress on all of our parts. We really have grown as a family unit. Sure, I have some complaints, or maybe I should re-word that, not complaints but small issues.

Saturday was relaxing. I washed laundry and did some Craig's List posting to sell a dog kennel, a frog, and a toddler car bed. I emailed pictures to a friend. We went to Walmart, cooked dinner and watched a movie on Disney. It seems like I should have gotten allot more done, but it went by really quickly.

Sunday Rick stayed home with the kids and I went to the dog track with my friend Fran and her daughter Bonnie. It was fun, I really would like to adopt a retired greyhound, what beautiful animals they are. I only lost 18 bucks, but didn't have to buy lunch, so I broke even in that sense. The whole time I kept thinking about how nice it would be to be there with Rick and the kids, I think, no, I know that they would really like it. They had 3 levels the bottom one there were families and it was closest to the dogs. Maybe I can get Rick and the kids to come and he'll want to adopt too. Sadie would have someone to run with, Brody would get a break, and Kaylin would shut up about wanting another dog.

Tomorrow I took the day off from work. At 9:30 Brandon goes to the pediatrician for his physical, 11:15 he gets a filing at the dentist, 3 pm I get 5 fillings. Might as well bang out all my appointments in one day. Then I'll take some time for Brandon to go to the pediatric eye specialist, for his neuro/psych eval, and probably blood work. I took Friday off too. We are going to SunSplash we our rain check tickets.

Patriots Day.

Today is Patriots Day. Where were you, and what were you doing when the September 11th attacks took place? What are your thoughts? Did you know anyone that died that day?

Friday, Saturday, and Sunday in a nutshell

Friday
After work on Friday I went to a party a girl at work was having. It was allot of fun and I took a lot of blackmail pictures. It was really nice to get out of the house and just hang out with "the girls".

Saturday
Saturday morning Carrie Phelps came for Brandon's appointment. It went pretty good. She's now going to see him every two weeks. I went grocery shopping. Saturday evening Kaylin's dad picked her up. Rick, Brandon and I went to a sunset wedding at the beach. I could hear the banjos playing in the background. It was redneck. I never met the bride or the groom. She was pregnant, this was his 3rd marriage. He has children from his previous marriages that he refuses to pay child support on. Oh, yeah, he has no teeth either. She was rude, any attempt anyone made to speak with her, she just walked away, never responding to us. We had fun anyway, when Rick's family gets together the fun makes it self. Rick did karaoke with his dad, Maureen did it with Tony, Rick's dad kept doing karaoke and dancing. It was a lot of fun. Brandon swam in the pool and did awesome the whole night. We came home after 2 in the morning.

Sunday
Sunday was Rick's birthday. He slept in late, woke up, fell asleep. I made him a carrot cake. I mopped the floors and ordered Chinese food. Yep, we are party animals.

Argghh...

Argghh.... Brandon is driving me crazy! He has been whining, crying, screaming, and being disagreeable since I walked in the door. I came home from work and he screamed in his room
for half an hour that he wanted his momma to come home. He was stuck in that mode. It was like that for most of the evening. He would say to us, "why do you hate me?" "Do you want me to move out?" and my favorite, "If you don't get me a drink right now, I'm going to die, do you want me to die??". Right now he has calmed himself down, and Rick is helping him with homework. I am really tired, I just want to go to bed, but there is so much to do around here and no end in sight!

Thought a ma bob

I have only one superstition. I touch all the bases when I hit a home run.
Babe Ruth 1895-1948

Last night when I came home from work, ready for Brandon's freaking out about the germs. Mentally trying to think of where I put the Lysol, he was asleep. Out like a light. I let him sleep for maybe an hour and then tried to wake him up, he was totally exhausted. He DID NOT want to get up. If I let him sleep he would have started his day at 3 o'clock and would fall asleep early. I drew him a hot bath and woke him up enough to put him in it, that did the trick. He ate dinner and took his meds, had some snuggles, brushed his teeth, watched a little TV and went to bed at a decent hour. He woke up with only a little resistance today, he was upset because he wanted Rick to go to the school and have lunch with him. Rick couldn't, I couldn't, we both felt bad, but I just can't, and Rick doesn't have a scheduled lunch time. He was upset about getting on the bus, but did. He's such an odd little bird sometimes.

Failure is not falling down but refusing to get up
--Chinese Proverb

A Labor Free Labor day

It was a labor free labor day. We lounged the morning part of the day. Brandon got his freak out on. It hasn't been often that we have been seeing this kind of behavior, so when he shows it we actually have the energy to deal with it. I asked Kaylin to go into her room and lock the door so he wouldn't hurt her. We talked to him, but he was past that. He started screaming and swearing, throwing things, hitting and biting. I'm still trying to figure out the trigger on this one. Our goal with therapy has been to catch him before he escalates and redirect him. Most of the time, that works, you have a very small window to redirect behavior before he gets "stuck" and there is no reasoning, no talking to him. Brandon is no longer there. He repeats the same thing over and over, sometimes longer than 45 minutes. Then he cries for another half hour, then, if we are lucky, he falls asleep and wakes up a new boy. If he doesn't fall asleep, he will cycle through and be kinda snuggly and insecure, then there is Brandon, back like he was never gone. We got past that melt down and putted around for most of the day. We wanted to go to the beach, since it has been raining all weekend. We called Pat and Tori to see what they were doing and they were already on their way to the beach. We started to make lunch so we could meet up with them, I told Brandon his lunch was ready and he was asleep on the couch, out cold. I let him sleep while I packed up the beach stuff. Tori called and told me all the beaches were a mess because of hurricane Gustav and the only people at the beach were surfers and it was all churned up and nasty. We ended up meeting them at Boca Grande, at our sweet little fishing spot. It has shaded, tree covered areas. We relaxed and chit chatted while the boys waded out in the muck and fished. Tori wanted to go out to dinner, since it was her birthday. She wanted to know if we wanted to come. I told her as long as it isn't too late or expensive. We ended up going to the Lock and Key on Manasota Beach. We got there after 9. Everything on the menu was ridiculously priced. Dinners were over 18 bucks. Rick, the kids, and I shared appetizers. Tori and Pat ordered big old giant dinners, with appetizers, drinks, and dessert. We got home at 10:30, which was too late for a school night. Brandon woke up being an asshole. I say that because I mean it. He was truly an asshole. I barely got him dressed before the bus came. He called me a bitch and punched me in the face. It was a lovely morning (comment dripping with sarcasm).

He did have a good day at school today. He got a 96% on his point sheet. He called me when he got home. He was really upset that the babysitter brought her kids today. He was freaking out about there germs all over the place. I told if that mommy wouldn't let the germs hurt him and would make them go away when she got home with her magic spray. This actually seemed to help and he said he would be nice to them.