The Purple Horse

Today was a big day for us! We had a neurology appointment at Gillette at 8:00 am, which meant that we were out the door by 6:00. I just love those mornings where you get to drive in the dark and pretty much have the highway to yourself until you hit the metro morning rush hour.

At any rate we were there to meet with two of the neurologists who have been trying to figure out what is going on with Lauren and FINALLY after eighteen months of testing, adjusting medications, and then some more evaluating we just might have figured it out. The news is not all that great, but I think this is really what is going on and we may be able to do something about it. They know that the temporal horns, which are some thingy that connects to the lateral ventricles of the brain and are a part of the system which regulates pressure have not closed. These temporal horns are supposed to be closed in girls by the time they turn 16. Lauren was 16 when we first started noticing cognitive declines in all areas.

So what do we do now? First thing up is a 72 hour EEG (what fun) just to make sure her seizure disorder is totally controlled. After that they will do a lumbar puncher and reduce her pressure to the normal range. This is a short term fix. By doing this we will be able to see if there are any improvements in her abilities. If there are then we go for the longer term solution which is to place a shunt to regulate her pressure. She is almost certainly going to have a shunt even if there are no improvements because her pressure needs to be regulated and monitored to be sure it does not get to high.

Everyone is feeling that the reason her temporal horns did not close has do with the traumatic injury to her head as an infant, therefore if the pressure can be regulated there will be improvements. The other possibility is that these things did not close because she may have some form of dementia, which has been the main thing they have been considering for quite some time now so that news is not shocking. Although dementia is diagnosed only when everything else has been ruled out, researchers are finding that temporal horns which do not function correctly may be a marker for some types of dementia.

One of the neurologist`s keeps telling Lauren that we are looking at all of the brown and white horses, then we found some black ones, and striped ones, and some spotted ones too, but we had to keep looking at her brain until we found the purple one. She is not understanding this analogy completely, but has been cooperating with all of this just to find that purple horse.

Gotcha!

I know it every time Miss Hanna is up to no good. I can just tell by the way she acts with that sweeter then sweetness oozing out everywhere, what she says, or most of the time what she does not say, she is up to something. Whenever you ask her what is going on you get the "nothing Mom", shrug of the shoulders, and the deer in the headlights look.

I told Dad and Rene` this morning that she was up to something and I would figure it out. Moms are like that some how. When I went to take a shower this morning I hit the jack pot. A brand new tube of tooth paste was smeared all over the place. It was in the garbage can, on the floor, on the sink, and the toilet seat as well.

Gotcha, again kid! It looks like someone will get to clean bathrooms and buy tooth paste with her allowance. I suppose we will have to have the screaming, kicking, crying nonsense first, though.

Found Snow

Since we have had very little snow here, maybe an inch now and then, or some shush/ice/rain, but basically a very very brown winter we went to Grand Forks, North Dakota to find some real snow. We spent last weekend with Rene` and Trevor on the campus of the University of North Dakota where they attend classes and I also did, as they will tell you, more then a few years ago. The photo on top is Gillette Hall in front and the Education building. I spent the majority of my time in class in Gillette Hall, third floor (up lots of stairs), to be specific. The photo below is the Ralph Engalstad Hockey Arena where we watched our Fighting Sioux sweep Minnesota State University in the final series before tournament play begins. There were no leather seats, marble floors with art work on them, or student season tickets when I was in college. We had to wait outside in the freezing cold before every game to battle for tickets and wear long johns to keep warm in the old arena.



It snowed on and off all weekend and of course there was wind blowing across the prairie as well. The top photo is the quad area which runs through the center of campus. The one below is looking from the Johnstone, Folton, Smith housing area ( where I lived all four years and where Trevor was a Residence Hall Assistant), across the English Cooley.

We took the kids swimming, ate, played cards, watched hockey,went to the mall, and found just enough snow to make it a real winter.

Still Here

Some one called yesterday, just to check since I have not blogged for a week. I am still here and busy as always. We went to North Dakota last weekend to find some snow. I have photos I will share later, for now a quick run down of things.

I have taken Hanna to therapy 2x. She is doing okay, but things are moving slower then expected, so we are going to have to step things up here and she is not going to like it at all.

I had to take Paul to Urgent Care since his ear hurt. He has an ear infection and is now on antibiotics and back to normal.

There is something wrong with our wheelchair accessible van. We have had it to the shop 3 times already and they can`t figure out what is going on. The check engine light is on again so it has to go back again. Karre took our big van and when she went to go to work this morning it would not start, so we have to figure that out, too.

The graduation drama just drags on and on. The latest is our legal people talked to the district`s legal person, but apparently that person does not know what the district`s policy is so they are now playing phone tag trying to get in contact with someone who is supposed to know what the policy is. Lets just say here that our legal people are getting tired of the run around. I understand since I was trying to get this done on my own for quite awhile and got the same treatment.

I had Allen to the clinic for his annual check up. I am thankful every day that his health is stable and requires little attention.

I had 2 PCA evaluations this week as well. That is always a venture in paper pushing that goes on forever, but it is done once again.

We have had Hanna drama to fill in the empty spaces of our days.

That pretty much sums up everything, nothing exciting just life moving along.

The Storm

The past few days have been relatively calm and quiet here. We had a cheating issue when Lauren, Hanna, and I were playing Crazy Eight yesterday. Even with Hanna cheating I won the game, so she was sputtering about that and how it is not fair. Paul was hopping and screaming because he had to pick up the shoe box full of playing cards. (It is a box of mismatched, left over cards that the kids play with). When he did not pick them up they became mine. Other then that we did chores, watched a movie, made pizza, and played. Dad and Paul pouted a bit when the Daytona 500 was rained out, but they will get their racing fix tonight.

This morning things started to fall apart for Hanna though when she thought she was going to leave for school with her pants rolled down to show the world her behind. I told her to put those pants on correctly, but I bet as soon as she left the house she was back in business. When she got home her pants were back to being inappropriate. She then decided to get loud so here we go again. She says she is not doing her homework, not taking a shower, or throwing her dirty clothes in the laundry. She is slamming her bedroom door and screaming nonsense right now. If she does not do what she is supposed to be doing before she goes to bed she will be adding to her detention tomorrow.

All of the weather people are bringing out the big scary storm forecast so maybe it will be her lucky day and they won`t have school tomorrow and she won`t earn any more detention. In that case it will certainly be my very unlucky day. I will either be dealing with a snow storm or a Hanna storm or maybe both. I went and got groceries today so we won`t starve or run out of toilet paper. That is how you prepare for snow in Minnesota. Now to prepare for a Hanna storm you line things up for the other kids to do to keep them out of the way when she starts throwing things and be ready to ignore lots of noise.

Let it storm! We are ready for whatever comes our way.

Together We Can Do This!

Awful, just awful, that is what Hanna`s behavior has been since last Sunday. She has been ripping her mattress up to make a house for her stuffed animals (so she says), she lost or threw away her good coat, refused to shower,brush her teeth, comb her hair, use deodorant, and rather then put clean clothes on she put them on over the dirty ones. She had been going to school looking acceptable, therefore they could not do anything even though her hygiene routine was not being completed. She thought it was pretty cool to get away with this. She clearly understood that Mom was not liking what she was doing.

Well, finely I had had enough so when I had the teacher on the phone to discuss some other things that were going on we had a chance to come up with a possible solution for the manipulation which was taking place.

Yesterday morning the plan went into action. Hanna had not showered the night before as she was supposed to and she had a medical appointment so she would have had time to shower in the morning, but still chose not to. She did not do any of her other hygiene routine either. I called school and told the teacher Hanna would not be there until she had done everything she was supposed to do. She heard the conversation, (I made sure she did). I took her to her appointment and she gave everyone there the poor me, I want to go to school, nonsense with tears and all They bought her whole sad story. Oh, how I wanted to set her down right there and give her a good talking to. Like kid, you are always telling me how you want to be like the other kids who are 14, yet you are acting like a preschooler. I was the "good" mom and restrained myself because I figured all of that logic was going to blow right over her head anyway.

We came home and without saying anything I began my day. After about half an hour of screaming at me and throwing shoes she was ready to do what she needed to in order to get out of here. (Staying home with me is torture for her). She showered, brushed her teeth, put clean clothes on, and all the rest of the routine in about 45 minutes. She also had to pick up all the shoes she had thrown out of the basket. She had to then call and ask if it would be okay for her to come to school. She went, Hallelujah! Peace and quiet!

When she got home Dad asked her how her day was going and she said "not really good, I in big trouble". She then had to explain that she had earned 6 lunch time detentions and could not wash tables for 6 days to make up for the unexcused absence. Losing lunch time means no time to "look" at the boys and not washing tables means no money. Hanna really likes both boys and money.

This will likely work, at least for the next 6 school days. I am sure she will be facing these consequences many more times. We can not have her pulling home and school apart with her manipulation. We are a team and we need to work together or she will make all of us crazy. Having good days is something that Hanna is capable of doing, but it feels very uncomfortable and scary for her. I think at some level she will always have a need to frustrate the people who care about and for her because it ensures that no one gets to close to her.

Boys, Boys, And More Boys

No school today and I am getting nothing done here. Hanna is in, well the usual big attitude, or better yet, the boy crazy attitude form.. That started yesterday and she is on a roll so why stop?

Today it is boys, boys and more BOYS! She has told me today several times that she can do whatever she wants to because she does not like me and I have dumb rules anyway. She likes boys, all of them, except of course her brothers better then a family and she will listen to them cuz she wants to and she really loves to do it because it will make me crazy.

Yeah, it does make me pretty crazy, but it scares me even more then that because she just is not going to stop until she gets herself into lots of trouble, the kind that Mom and Dad can not get her out of.

Tomorrow is a late start here for teacher training so the morning routine will be a mess once again and then Wednesday Hanna has an appointment early in the morning so I guess we are in for at least a couple more days of this nonsense. I just figure this week will be one of those that will be loud, nasty, and generally unproductive.