Lauren Update

Several people have called and emailed to see how Lauren is doing.  I have been at a retreat this weekend so PCAs have been taking care of her.  She is still having headaches most of the day and still needs to lay flat and be medicated regularly. 

She has been looking forward to going back to school tomorrow since the day she had surgery.  We are going to try for half days at least for now.  That means that she will not be going to her job, but we have to get her more stable before we work on that.

This is a slow process which requires everyone to be flexible. We don`t know what will work so we will have to take things one at a time for now. For now we just need to get rid of the pain she is having and then we can move on to something else.  Hang in there Lauren!

We Are Home

 We made it through that great vacation.

 This is about 12 hours after surgery.  Lauren`s face was rather swollen.  She was not talking or moving much at all.  She just hung out with her purple teddy bear (Violet) buried somewhere in the blankets,

 This is the next morning when she got in her chair to work on her goal of going home.  She had to be able to sit in her chair for at least an hour and a half, but this look on her face after only about 3 minutes made it clear that she was not going to be going anywhere.  She made it 10 minutes and was put back in bed.  After tears, medications, and a shunt adjustment she rested well for the remainder of the day.  She got her nails painted, played with the therapy dog, and the music therapy group came to her room.

The next morning she was able to be in her chair long enough so we got to go home.  She is a pretty happy girl laying on the couch with the cat.

Now we deal with some pain issues while she adjusts to having the pressure in her head at a normal level.  This process could take several months.  We also wait to see if there will be improvements in her neurological function.

Anyway we made it.  I am going to a retreat this weekend.  Lauren`s care will be in the hands of wonderful people who I am sure can handle this shunt thing just fine.  Dad gets to hold the fort down here with 3 PCAs to help him out.  I will be back to deal with all of this first thing Monday morning.

Pacation

According to Paul, Lauren and I are going on pacation (vacation).  In reality we are heading to the hospital long before the sun comes up in the morning, as she is having a programmable Ventriculoperitioneal Shunt (VP Shunt) placed in her brain to regulate the pressure. This will hopefully improve her neurological function, although no one knows how well it will work.  At the very least it will help to remove toxins that are building up in her brain. This is it, there are no other options, so we are praying that it works for her. 

In order to prepare for this pacation we had to take Lauren off her seizure medication, which has resulted in her having many seizures and requiring much supervision and care.

In the meantime Miss Hanna, our chaos creator, has been on one heck of a roll with her behavior!!!  She went to respite, THANK YOU VERY MUCH, where she will put on her sweet, innocent, act. She has totally exasperated me today so I am looking forward to a break from all of that.

I can deal with Lauren in the hospital for however long we need to be there.  She does her best to cooperate, she wants someone to be there for her, and she does understand that we are doing our best to help her.  This RAD garbage on the other hand is just so tiring, trying to work with a kid who does not want to be helped, does not care at all about herself or anyone else, and would never be thankful for anything.

Well I am going to feed the crew, get a couple more loads, of laundry done, make lunches for the boys, and get a few hours sleep before pacation begins.

Watering The Grass

We made a trip to the orthodontist yesterday, nothing particularly news worthy about that except that they adjusted Hanna`s wires 6 milometers on both sides.  That is a huge change. We are finally getting somewhere in this very long process.

On the way home we were driving down a rather busy 4 lane highway when traffic on both sides of the road had to suddenly pull off to the right in order to make way for 3 police cars, a sheriff car, and 2 fire trucks to go by. After they went by traffic crawled along at a snails pace driving on the shoulder of the road for a couple of miles and then we had to stop.  There was a grass fire (which is not a good thing considering that it was 90 degrees, windy, and very dry).  Anyway the fire department personal were hosing down the area and it looked like things were pretty well controlled.

Hanna pipes up with "hey, why are they watering the grass here"?

Really, you can not connect fire trucks, flashing lights, flames, and smoke and come up with fire equals water it down and put it out.

FASD sure makes a mess of things doesn`t it.

apples

We went to pick apples and raspberries this weekend and we missed you, Jared!  Your the tall guy who can lift the kids up high to reach the best apples.  They had to get some that they could reach by themselves this time. 

We had a good time anyway.  It was warm and pretty windy, which kept the bees away.  The apples were good around here since we had a little rain this summer.

I made apple crisp, a large batch of apple sauce, and pies.  I only made 4 pies though instead of the usual dozen that we could get done when you were home.  My pies do not look as fancy as the ones you make since I am not great at doing that extra stuff, but they will get eaten just the same.

Silence

Do you hear the silence?  It started yesterday when Paul joined the rest of the kids back in school.  It is so nice to have a few hours of quiet.  I didn`r even turn the TV or radio on yesterday. The noise comes back shortly after 3:00 pm, of course when I have just gotten on the phone with the pre-op  nurse to go over the details of Lauren`s surgery.  Paul had to come bouncing, screaming, pounding, and screaming some more.  He was just a bit wound up after his first day of 2nd grade.

I have 10 days to get meals in the freezer, catch up on the paperwork, get clothes and bedding organized, and get schedules ready for everyone so Dad and the PCAs can take over here for 2 or 3 days while I sit at the hospital with Lauren. 

Lauren is having a programmable shunt put in so that the pressure in her brain can be regulated.  We have to stay there until her pressure is stable which is supposed to be 24 to 48 hours. 

I had better get back to work  while I have the chance to do so in silence.

A Day With Sonny Boy

"Mommy, Mommy, it`s time to get up, the wadio (radio) can come on now, I wove, wove, wove, (love) you so much, your Sonny Boy is here Mommy".

That is the morning wake up I get directly in my face every morning and 95% of the time it is before 6:00 am.  He can not say words with the letters l and r correctly and he has to hug and kiss you and climb all over the place, but he is cheerful so that gets the morning off to a good start. 

This morning the big yellow limo pulled up to transport 3 kids off to school  Lauren was moving slow, but got out the door okay.  She is starting her transition program.  She goes to her job for part of the school day and I think she is ready.  It is going to be a long process getting through this, but we will deal with it one thing at a time.  Allen is technically a senior.  Is that for real?  I just am not quite seeing it yet. Hanna is bored with the home rules and ready to get back to the school rules at least for a little while. 

That leaves me home with Mr. Paul, Sonny Boy, my buddy, or whatever else he is calling himself at the time.  He had 3 choices for breakfast this morning:
     eatmeal (oatmeal)
     mini weeps (mini wheats)
     my favorite ,pancakes with soap (syrup), doesn`t that sound tasty?

Until Thursday when they all go to school I am here listening to the nonstop chatter of my Sonny Boy.