fragilex mom blog

I had so much fun yesterday. Amy came over and we went out to lunch. We went to Bigotes and it was wonderful as always. We talked and laughted the whole time. Then we went shopping. Ken and I had a nice night last. I didn`t paint at all and I really need to get busy today ! I also have about 100 caladiums to plant. I`ll write more later.

It`s been a really hard couple weeks. I am only on door 3 out of 7. Ken is going on a motorcycle trip Thursday and I of course am staying home with Danny. I`m bummed out bad. We haven`t made love in ages. I told him we had to before he went on his trip. I`m going to fix up Dannys old room for me. I want my own space. We finally have soom room with Tommy and Greg gone. My diet is going pretty well. I haven`t baked anything this week and I`m not going to until we go to San Marcos. I have to bake cookies for the special olympics kids and coaches, I`ve spoiled them all. Well maybe I`ll be in a better mood tomorrow. I guess it depends on how tomorrow goes. Ok I`ll try and write again tomorrow.

Okay it`s been a week and a day. I have never been very disciplined to say the least. Lets see , it was a pretty busy week. I finally finished Danny`s room. I got him a new bedspread, sheets, lamp and TV. Greg came over Sunday and hooked up all his nintendos and dvd and vcr. He loves it! He was up until 2:30 or so last night playing videos so he stayed home today.
Last Friday I went to school to see field day. Danny didn`t participate at all but was at least out there watching. We sat and did safety signs and watched the action.
Saturday was special olympics. Wohoooo Danny won 2 gold medals. One for softball throw and the other for 50 meter walk. He was not too wild about going to the softball throw but we finally got him there. Frankie was there with another client and she talked to him and helped get him where he was supposed to be. I knew he was going to do one of his crazy windup pitches because in the car he started talking about Nolan Ryan. His first throw was pretty good, the second one had the windup and it went straight up. I think his third throw was his winning throw. It really went far. After he got his medal we went home and had lunch and he took a nap. We went back at 2:00. We had to wait about an hour but he was really good. He walked his race and did great. He got a good start and lead the whole way. Two events , two gold medals. Can`t complain about that. We are going to state!!
Today I primed the closet door and cleaned house. Dannys teacher is coming tomorrow. Frankie is coming tomorrow too. We had a huge storm this afternoon. They said a tornado was possible for Dalworthington Gardens so I got a little worried. It hailed here, it was marble size.
Dannys lawyer called today about the gaurdianship. She is coming next week.
Okay thats all for now.

Ken is at the Nascar race. Tommy just left for Ga. The little idiot showed up Saturday morning. Axel quit his job so Tommy drove his stuff back. Of course Tommy still has not registered the suburban and it has no insurance. Needless to say I wasn`t thrilled to see him. Well it was good to see him just not glad to see the suburban. I told him if he drives it back again I`m going to slit the tires.
Yesterday was Dannys ballgame and he would not play. It was maddening!
Susan is supposed to call and we are going to go buy some flowers. I love spring!
I`m listening to car talk so I`m going to go now.

Can`t believe it`s been so long since I`ve written. Guess I`ve been busy. We are still working on Dannys new room. It`s looking real good.
The cop finally came yesterday and served Danny his papers and he was so good looking!I got an email today from the court saying Tommy`s letter came back and they had the wrong address, so I emailed them back with the right addy. The were just off one number.
Frankie,Danny and I went to the ballpark today and ate and watched batting practice. We didn`t go in the stands to watch cause Danny freaked out and wouldn`t go. I`m surprised we got him in the resteruant to eat. We drove the caddie and that was fun. We got there to early. I was told the gates opened at 4 but they don`t open until 5 so Danny lost it. Oh well maybe I`ll try again sometime.
OK I`m real tired so I`m going to bed now. Night night.

I am getting more and more bummed out about school. I am so glad there are only 6 weeks left! I don`t know why they don`t give us what we want if its within reason. I think the OT probably is a pussy that doesn`t know his ass from a hole in ground. Well I am going to get him some OT next year regardless and I think I will check out massage therapy this summer. I hope school is better next year because I really want him to go til he is too old to go anymore. I`m just bummed!!!I hate that he is having such a hard time going to classes. WAAAAAAAAAAAA

We had Danny`s ARD today. It went okay. Danny had to be there. I`ll be glad when the gaurdianship is in place so he doesn`t have to go to all these boring meetings. He didn`t get OT but I`m going to ask for another ARD as soon as school starts in August. We are going to be getting in home training starting next week probably. The special ed counciler seemed like a pencil pusher. I don`t think she does any counciling. Of course I didn`t like the diagnostician either. I`ve never met one I have liked yet. I wish I had the ARD papers. I don`t who was there from administration. Maybe that was the councilor. I hate ARDS. I also told them Danny would not be going to EYS because I was not at all impressed with the program and he needs a break this summer anyway. I want to keep him in school but things need to get better.
Danny came home with me after the ARD. When we got home I realized I didn`t have my house key. I went to Kens work to get his and he was in Dallas. Then we went to Gregs and he was home and I got his. I made Danny and myself lunch then painted the woodwork. I was going to try to paint more but it started to rain so I had to get everything in the garage. I`ll try to get a lot done tomorrow.
I`m still waiting on the cop to come and serve Danny with his papers.
We are under a tornado watch.

I had a busy weekend! Danny had his first ball game of the season Saturday. He did really well. His coach wasn`t there but the coaches daughters were there and are really nice. The coach was at a softball tournament.
Sunday I went to a fragile x support group with Amy in Irving. It was a good group. I`m looking forward to the next one. I met Jennifer there. We have talked on line but met in person. She seems really nice. We didn`t get to talk much much because it was a bit chaotic.
The time change sucks. My body is so confused. I started painting the trim today. I have a lot more to paint. I am waiting on some to dry right now.
I wonder if the constable is going to come today. Danny is at the mall with Frankie right now so I hope he doesn`t. I don`t want to cook tonight! Maybe Ken will just eat a sandwich.

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The person from the probate court came yesterday for the home visit. She explained the procedure here in Texas. First a constable will come tothe house and serve Danny. Then we get some letters in the mail witha court date.Dannys brothers will also get certified letters sincethey are next of kin. Danny will be contacted by his lawyer. Thenfinally we go to court. Danny won`t have to go (thank goodness!). Hereally hates waiting and court is all about waiting. After havingthis set in motion and we get guardianship it is all pretty automaticin the following years. We just have to do yearly paper work to keepit currant.So far it has been pretty easy. I should have started earlier though.I thought i just needed a letter from his doctor but I needed arecent report from a psychologist. So of course that took some timeto get the appointment and the report.With all the new privacy lawsits important to have guardianship so you can have imput on medicalcare ,education etc. Since Danny turned 18 he has had to sign all hisown paperwork and we all know how many pages that can be. To get hisSSI started he had to sign something like 13 pages. Danny is not bigon writing either.I keep telling him you`ll get money "SIGN IT". Hereally likes when his check comes :) Whew another milestone passed(almost).Tracy