Tuesday, May 29, 2012

Purple Party

We had a "Purple Party" over the weekend to celebrate with Lauren all she has accomplished. She did not care what food was served or any of the other details of the party, the only request was that it be purple. We had everything from purple flowers, M&Ms, and cupcakes, to purple cauliflower. She was thrilled about all of this. It was nice to celebrate with many of the people who have been with us on this journey over the past 12 years.It is wonderful to have family and friends who care as much as we do for Lauren.

Everyone knew exactly what Lauren would like: purple nail polish, purple bracelets and earrings,purple socks, and a purple blanket.  There was also money for her to purchase an I-pad which Mom and Dad are adding a purple case too.

Monday, May 21, 2012

Crazy Days Of May

Just taking a few minutes to blog, really to much going on around here.  The kids will be done with school next week already. Am I ready for that? No, but it is going to happen anyway. I somewhat have PCA schedules figured out for the summer months.  I will get to the rest of it soon.

Last week we had an art show for Hanna, Allen, and Lauren to go to. This is a program they do often where kids with special needs get to do some "real" art as Hanna calls it. The only trouble with this art thing is that Hanna REALLY NEEDS to keep every single thing and that just is not going to happen since we don`t have room for it.

The state adaptive bowling tournament was last week also. Lauren and Allen participated. They did well. Hanna`s behavior kept her in school that day. After watching this event I am positive that Hanna will not be participating in the future. She needs a lot more structure then what was available.

Before school is done we have a party for Lauren this weekend. It is going to take some work, but all of her siblings will be here for a few hours. Hopefully I can round all of them up for a photo.

As soon as we are finished celebrating we have to get a moving truck loaded with Jared`s stuff so he can drive it to Georgia. We have gotten lots of moving practice in lately. I would really like to know what furniture is staying here and for how long? It seems our house gets fairly organized and then, wham we get hit with another round of moving.The best part of this round of moving is that he IS taking HIS DOG with him! I think Karre, Mom, and Dad have had that dog more then he has.  We have done our share of dog sitting.

There is going to be a small party for the 3 seniors in the special ed classroom. Karre is making some fancy star cake for that.

Trevor and I are helping a mom do the paperwork for conservator/guardianship some time this week. As Trevor says "after doing it twice it isn`t scary at all".

They have field day at Paul`s school. He is not excited at all about that so I figure he will spend the time entertaining his para instead.

Lauren is going on a trip to Valley Fair with her class. Rene` gets school bus riding and roller-coaster PCA duty that day.

I have 8 PCAs/respite providers working this weekend. Yes, I am very thankful that everyone is giving up all or part of a long holiday weekend to work.  We could not do this without them.

And now back to cleaning and organizing this place.

Tuesday, May 15, 2012

Celebrating And Moving

I got flowers for Mother`s Day. They were beautiful. I spent the day hauling 2 kids home from college, cuz that is what mom`s are supposed to do, right.
Before we hauled mountains of stuff Trevor graduated with degrees in Communications, French, and International Relations. What he is going to do with all of those degrees, I don`t know, but whatever it is it will be great.
Now we are both alumni of the University of North Dakota.

Tuesday, May 8, 2012

Enough Already!

It is Angie`s (our PCA) fault that Hanna pulled 3 brackets off her braces...

It is Angie`s Grandma`s fault because she gave her 2 cookies...

It is Dad`s fault that he didn`t tell me that she had broken them off...

It is Mrs. Teacher`s fault that she has not been wearing her bands on her braces...

It is the orthodontist`s fault that she has to miss school today to have this mess repaired. They could just be open on the weekend you know...

It is my fault that she has to wear braces...

And guess what we have all had enough of this ranting, VERY LOUD, tantrum already this morning because she wants to go to school to make a poster.

Enough already!!!

Monday, May 7, 2012

Update

Well we made it through the weekend.  Lauren was not doing so well at getting adjusted to the lower pressure in her brain. She was not eating, she was whining and cranky, her color was terrible, and she was in pain.  We pretty much had to shut things down to give her body time to do whatever it is it needed to do to adjust. She was doing considerably better late yesterday afternoon and she did eat dinner last night so I think things are looking up, at least I hope so.

Now we are back to something that we are all very familiar with, observing her and documenting the results.  We also need to schedule a shunt study.  As I understand things this is where we make the choices as to how and when to proceed with this.

We keep moving along, one thing at a time.

Thursday, May 3, 2012

Just Chillin Today

We are home and moving, but rather slowly at best. We got the loud bunch on the bus and Dad went to work so it is just Lauren hanging out with me today.

We had a lloooonnnnggg day yesterday, as in we did not even leave the hospital until 9:00 pm. After having her procedure Lauren needed to lay flat on her back for at least 6 hours. Now that may not seem like it should be to difficult to accomplish, but when you are telling someone who is feeling miserable that they are going to feel really, really miserable if they do not lay flat, and that all that someone wants to do is go home, go home, go home, it becomes more of a challenge.

We watched a couple of movies, I read to her, Karre read to her, we tried to play UNO, we listened to music, she feel asleep for about half an hour, and then we watched cartoons.

While we were hanging out there with her,I got a call from Dad telling me that we needed to stay put until some severe weather went through because he did not want us to have to stop some place with Lauren. It sounds like he and our PCA, Angie had a great time trying to serve dinner, and get kids showered, while being interrupted to go to the basement. I was okay with missing out on that adventure. Hanna told me this morning that she was mad at Angie because she made her take a shower 2 times. Apparently Hanna had just gotten in the shower when the sirens went off so she had not used soap and had not washed her hair so Angie made her get back in the shower for a second time to finish the job.

Well we are home, Lauren is whiny, we have had tears this morning, and she isn`t feeling all that great, so we will cover her up with her purple blanket, let her watch cartoons, and chill today.

Wednesday, May 2, 2012

Today Is The Day

It`s here the day we do the test run at reducing the pressure on Lauren`s brain. There are 3 things we hope to accomplish with this procedure. First we are hoping to make her feel physically better. She has never complained of being in any pain, however it is very likely that she is experiencing headaches or other pain. Secondly we hope to get her cognitive functions back to where they were before this all began at best. There may be some improvement or none at all. This area is quite uncertain in its out come. Finally in reducing the pressure the seizure disorder may also be resolved.

So here goes another day of signing papers, answering the same questions again, waiting and waiting and waiting. and I am sure to get some reading time in too.