Monday, October 31, 2011

Halloween

We had gotten together with friends this day for the past several years. I thought about it for a long while before I decided that that tradition was not going to happen this year. They have kids who are having lots of food and regulation issues. We have Hanna attitude which also involves food and regulation issues. We have had Hanna attitude for several years now, but the difference is that we are no longer putting up with any of it. If she wants to sabotage, steal, lie, pout, or any of the other garbage she tries to pull she just does not get to participate, period.

After talking it over briefly with my friend we decided we were both okay with out getting together.

Paul is still a little kid and we want him to enjoy the day so we are going to bring dinner over to Karre`s house. Karre and Angie will take Paul and Andrew trick-or-treating for a little while around there. Dad is in charge of guarding the candy we have to hand out so Hanna does not eat it and Lauren gets to hand it out to the kids that come around. Karre wanted me to organize some of her kitchen stuff so I think I will get Allen to help me with that.

Friday, October 28, 2011

Karre Gets To Move Out

Today is the day Karre has been waiting for. It is the day she signs her life away and begins being a home owner. Yes, our eighteen year old daughter is buying a townhouse. She is so excited, has worked so hard to earn her money, and really wants her own place. Actually she really needs a break from Hanna, (all of us do).

Karre is the fourth of our eight kids, but she will be the first one to have her own place. She is the youngest person the Realtor has ever sold property to. As she puts it most kids just are not this responsible.

Karre was able to buy a two bedroom, two bath townhouse with a double garage for less then she would be paying to rent a two bedroom, one bath place with no garage.

Way to go Karre, we are so proud of you!!! I am sure you will come across town for Mom cooking several times a week.

Wednesday, October 26, 2011

Let`s Do This Once Again

I took three kids to the dentist this morning. Everyone has great teeth, but we have Allen who is just about an adult (I can hardly believe it) who has a huge wisdom teeth issue. With the Down Syndrome and FASD combination he has a very small jaw, even smaller then the average male with Down Syndrome alone, so needless to say those teeth have no place to go except places which will cause enormous problems. The kid has never had a cavity in his life and his teeth are straight which is pretty unusual for someone who has his issues.

I have already been dealing with the issue of getting MA to pay for removal of Lauren`s wisdom teeth and thus far have had zero success. Allen`s dentist is a young go getter of a lady who says she will give it a try to get this approved for him. I wished her lots of luck and told her to go for it. We will see what happens with that. We will cross our fingers, hope for the best, and say a few prayers too, just for good measure.

Sunday, October 23, 2011

Wishing For The Impossible

The kids have not had school since last Wednesday morning and Hanna has spent all of this break in trouble. I am SO GLAD Dad and Karre were the two who caught her and laid down the law for once!!! I am the one who deals with this 99% of the time and it gets really tiring.

Even before the break from school started Hanna was caught eating and drinking what was in her lunch box on the bus on the way to school. We had to get her seated where she can be watched on the bus.

She stole a lot of stuff from Karre`s room. Karre is really excited that she is moving to her own place the end of the week. I do not blame her at all, having a kid sister who constantly rips you off really is no fun at all. Karre is a really caring sister who has let Hanna get away with an awful lot, but there comes a time when enough is enough.

Dad caught her stealing the snacks that I purchase for the kids lunch boxes. Lets just say she had herself a real feast. She will not be having any snacks or deserts in her lunch for a very long time.

She could not figure out what the problem with taking the snacks was so she then stole a whole box of graham crackers, too.

She had to top the weekend off by stealing the controller for our main radio which has all of our alarms set on it. It is the one we let Paul listen to because he can not go to sleep without noise in his room. Anyway she took the controller and hid it in the drawer which contains sweat shirts in Lauren`s room. She was telling us that Lauren took it and put it there, but after everyone told her we did not believe her she admitted that she had taken it because she was mad and wanted to get Lauren in trouble.

You can NEVER believe anything that kid tells you. She lies about EVERYTHING. It just comes out of her mouth before she even thinks about what she is saying. She can not be left for even one minute unsupervised, EVER.

I don`t know how much longer we can keep doing this. There are days when it would be so nice not to have to deal with this crazy behavior.

It would be nice to know that my money will still be in my purse if I forget or don`t have time to lock it up.

It would be nice to make meals with all of the food I bought available to make them with.

It would be nice to go just one day without being lied to at least a hundred times.

It would be nice to go without carrying a stack of keys around.

It would be nice for all of the other kids to not be blamed for things they did not do.

It would just be nice to live a life free from stealing, lying, cheating, screaming, hitting, kicking, and manipulation. I might be wishing for the impossible here, but I still wish for it anyway.

Wednesday, October 19, 2011

Moving Right Along

It has been far to busy around here to take time out for blogging.

Last weekend it was warn and a bit windy, but great weather for trimming trees and getting the planting areas ready for winter. We hauled away a truck load of branches and brought back mulch.

I have spent three days doing appointments with kids.

We have had to deal with several Hanna behavior issues,as usual. They remind us that this kid will always try to manipulate everyone in her life and she will always need to be supervised closely.

Today I am getting meals prepared and the laundry done so Dad can maintain order here. It is MEA week here so there is on school Thursday and Friday. Paul was upset about that because he says he wants to play Jim Bob ( from the Waltons) and trucks with his para. I am nut so sure she is really into all of this though.

Tomorrow Lauren has an extended EEG, which involves sleep deprivation, (oh yeah, I do not function well without my sleep). I am not sure how long this thing is going to take, but they gave me a multi page packet of instructions and a list of things to bring including extra clothes so I guess we will be setting up camp at the hospital for a while.

After that we need to celebrate Alex`s (the nephew) tenth birthday, he sure is growing up fast.

We are having lunch with Allen`s Mum.

We have to get our big van serviced., and hopefully we will have a little time to relax, too.

Things just keep moving right along here.

Monday, October 10, 2011

Schedule Chaos

The people who work in the scheduling department at Gillette Children`s Hospital work hard to earn their pay. Lauren needs Phenal injunctions, an MRI with contrast, a lumbar puncture, and sealants on her teeth. The goal is to get this all done on one day so that she has Anestassia once rather than four times thus avoiding three extra pre-op physicals. In order to do this all of the physicians, operating room team and an available operating room that can meet all of her needs has to be open at one time. Yeah, it gets a bit complicated but we have done it before and will get it done again.

I was on the phone six times today with the scheduler. We have an operating room, the operating room team, and two of the four physicians scheduled. She is trying to re-arrange the schedules of the other two physicians to make this work.

I do a lot of scheduling to keep these kids going, but that lady has me beat by a lot. I can not even imagine how much chaos she organizes every day. We will be back at it tomorrow.

Thursday, October 6, 2011

Working On It

Two long days of neurology appointments down, problem solved, no, but we have a team which includes a pediatric neurologist, an adult neurologist, and a seizure neurologist (who all work specifically with persons who have traumatic brain injuries and work together) on the case. We have several tests to be completed over the next six weeks and a team meeting to follow that.

We will get to the bottom of this. Everything that these physicians are coming up with is extremely rare, by that I mean these things occur in less then 2% of all persons who have TBIs. None of the possibilities are great, but just knowing what is going on will be better then not knowing.

Monday, October 3, 2011

Attitude And More

We had quite a bit of Hanna attitude last week and this morning was no different. Since she was ready to go out the door with plenty of time to spare I told her to put the dishes away. She put the three things that were on the counter away and then ran out the door. I guess she thought I would never know that she had not unloaded the dishwasher. I got her back in here and had her put ALL the dishes away. She keeps coming up with this "my brain don`t think" line trying to get away with things. Her brain has a lot of short circuits , but it works better then she would like us to believer it does. They have a sub today so I am pretty sure there was plenty of manipulating going on at school.

I have been working on cleaning the basement. Kids sure can make a mess!

I will be at neurology appointments with Lauren for the next two days. Hopefully we can get some of this neurology stuff figured out. She continues to show signs of seizures which create some issues. She also just can not function at times. One day she could not figure out where her pajamas were. She has been able to get them from the same drawer in the same dresser in her room for the past ten plus years and all of a sudden she can not find them. The other day she could not figure out how to play Sorry (her favorite game). We have played this game hundreds of times, she totally understands how to do it, yet she could not figure out what to do with the different cards. If these things were happening just once in a while it would be no big deal, but this sort of stuff is happening far to often to just let it go. Wait and see and likely a lots of medical testing as well, sigh.