Tuesday, September 30, 2008

MRI cuteness

Yesterday Brandon had his MRI. We woke up at our normal time and went to the hospital. On the way I slipped him a Valium and we registered for out-patient testing at Fawcett. They brought him to the MRI room and explained to him what was going to happen. They gave both of us ear plugs and put him in the machine. The wedged his head still and put a big helmet on. The moved him into the big machine and started the test. That boy was asleep in 5 minutes, probably less. I couldn't believe he feel asleep with all that noise, it was like a jack hammer! After the MRI, we had to wake him up. They technician asked him if he wanted to see a picture of his brain. He checked it out, thought it was really cool and told the tech that it sure looked like a smart brain, and it was pretty huge. She got a chuckle out of that. He then asked her if her printer worked, because his mamma's printer didn't work. She told him that it did work, so he asked her to print him a copy because his sister said he didn't have a brain. They printed out a picture for him, I thought it would be piece of paper photocopy type things, but it was a full x-ray paper thing. I was quite impressed, and apparently so were the techs (with Brandon). After the MRI we had breakfast with Fran, I wanted to thank her for all her help. That little boy was hungry, but so was his momma. We said goodbye to Fran and went to check out the Halloween store since we had time between appointments. He picked out what he wanted to be for Halloween, so now I can go back and buy it when I have the money. After our window shopping we went to Brandon's eye specialist appointment. She was really, really nice. Brandon needed glasses and we found out he has a congenital eye defect with causes cysts on his pupils that keep his eyes from dilating. We were finally finished with our appointments so I took him for a Frosty at Wendy's before dropping him off at Fran's. I got to work at about 12:30 and squished a whole day into a half, but that's to my team everything got done. I picked Brandon up at Frans, took him to Walmart to pick out his glasses, we got two pairs. He IS a 7 year old boy. We ran through the drive through for dinner, went home, feed everyone real quick, got back in the car, sped off to soccer, left there at 8, stopped at Walgreen's and got toilet paper and picked up prescriptions. Talk about a busy day!

Saturday, September 27, 2008

Friday I went to the dentist, AGAIN. This time I got five filings in my front teeth. I just have to go back and get my permanent crown and I'm done for the year. Next year I can get another root canal and some more filings. My dental benefits only cover so much a year.

Today has been quite pleasant. I got to sleep in until 10, which is a rare treat. I took Kaylin for her soccer pictures, came home. We started a puzzle last night, the kids and I and actually finished it today, it was one of those 550 piece jobbers. They have been bickering all day, but are actually playing nicely, although loudly. I talked to my dad on the phone which was nice. He lives in New York and I miss him.

Monday Brandon goes for his MRI and sees the eye specialist. I also got a call from SSI saying he was approved and will get full medicaid and $247 a month in benefits. He has a genetics appointment on October 22nd.

Tomorrow is SunSplash. Woo Hoo!!!!

Thursday, September 25, 2008

Ear wax maddness

Yep, I'm lame. We spent the nite doing ear candling. It was actually fun. We are having a contest to see who's ear wax is the nastiest. I actually took the time to post pictures on myspace to have people vote on. I think I better up my meds. LOL

Wednesday, September 24, 2008

It's Wednesday! Whoo hoo..

I'm back to work after a day and half reprieve. I'm still stuffy and boogery. Rick is home with Brandon, he took the day off to stay home with him so I could work today. I was really surprised when he offered, it's kinda out of character for him. He really has been more involved with us, which is nice. It was a concern of mine for a long time, it was us and him, now it's a little more like all of us. Kaylin has been awesome, she sat and did her make up work last night from when she missed school. I wonder if she feels more "mature" now, I don't know, but I'll take it while it comes. We cancelled the team meeting last night, since we were all sick. I didn't think it was nice to share with everyone what we've got. Hopefully by Friday we will all be humans again and Sunday we can go to Sunsplash.

I decided to share this blog with some myspace friends, I posted it on my bulletin asking if anyone was interested in reading it. I'm a little nervous about it, people will see how boring my life really is, and I don't want to hold anything back because I'm worried about who will see it. So I won't. If they don't like it, they don't have to read it, ya know. It's my way of venting and looking back to see what progress or how my feelings have changed. It's my therapy.

Tuesday, September 23, 2008

Well, it's been a week

It's been a week since I've blogged. We are all sick. Runny nose, coughing, stuffy, fever, body aches sick. All of us. Rick started it, it's all his fault. Friday we were suppose to go to Sunsplash, but who da thunk it's closed on Fridays. We went to Peace River Wildlife Center, it was nice to see the birds they took care of. Then we went to the Shell Factory and played miniature golf and the kids did bumper boats. Friday when we got home, Kaylin started her first period. Shhh..don't tell anyone. She was horrified, I knew it was coming. She acted like she was the only chick in the world that it ever happened too. Saturday and Sunday we were all bed ridden. Rick went to help his dad and brother put floors down in the post office. Monday Rick stayed home with Brandon. Kaylin missed the bus, Rick drove her to school. Then she called and said her ear hurt and she had cramps, Rick picked her up again. I called the pediatrician she wanted to see her, so I left work, which I was more than happy to since I felt like poop, took her to the pediatrician also took Brandon with me since he was pathetically sick as well. Kaylin's ear was a mess, and they wouldn't see Brandon because they couldn't fit him in, but they would see him Tuesday (today). I took off work today and took him to the doctor, he has bronchitis, no school tomorrow. Rick is taking tomorrow off so I can go back to work tomorrow. That was my week. I'm starting to feel a little better, so is Rick and Kaylin, now Brandon is the worst of us.

Wednesday, September 17, 2008

My busy Tuesday, and my weird Wednesday

Tuesday I took the day off for a bajillion appointments, well three if you want specifics. It started with Kaylin waking me up that her ear hurt real bad. Rewind to July and you'll read she had double swimmers ear. Brandon had his appointment for his 7 year physical, so I drug Kaylin along with me. The first stop of the day was to good ol' DMV, to get my name changed on my drivers licence. Believe it or not I was in and out in 10 minutes! Then we were at Dr Anurumo's for our 9:30 appointment. Kaylin had the starting of swimmers ear, AGAIN, she was all filled up with snot and fluids. She left with decongestants, ear drops and nose spray. Brandon was overall healthy, and he was complying with the doctor. This is a good thing considering the first time he met her, he hid under the exam table kicking her and screaming. She was checking him out and noticed his birthmarks, I've always called them his angel kisses. He had some new ones I don't remember always seeing, but thought nothing of it. She said they were called cafe au lait's and 1-2 is normal, anything over 5 is fibroneuromatosis, he has 10. I have to take him for an MRI, to a genetics doctor, and neurologist and get some expensive blood test done. Of course I googled it the minute I finally got home, and this in not a good thing to have. I will not freak out until I'm told too. Well, not all the way freak out anyway.. The pediatrician was followed by Brandon's dentist in Venice for a filling. We made it with a few minutes to spare. He sat in the big chair and stated to whine that he was scared. The dentist then told me to reschedule. We were there for not even 5 minutes. That pissed me off a bit, especially since she is a pediatric dentist. Back to town we went, stopped at Burger King for lunch, Walmart for gas, then to Tire Kingdom to get my oil changed. That took awhile, Fran met me there and took the kids. I went to my dentist appointment at 3, was late, got my temporary crown, picked up the kids and headed home.

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.

Monday, September 15, 2008

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.

Thursday, September 11, 2008

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?

Tuesday, September 9, 2008

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.

Thursday, September 4, 2008

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

Wednesday, September 3, 2008

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

Tuesday, September 2, 2008

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.