Questions in therapy….

 Kaylee-Can Dani think? Sometimes I think she is thinking when I go in her room, is that my sister Kaylee? And other times, she just seems out there.

Brianna-Is Dani happy? Or would she be happier in heaven?

Also items that came up, is Dani lonely, is Dani depressed and does Dani miss us? The same issues Dan and I wrestle with, our 9 and 11 year old girls are pondering the same things… 

Last night was Brianna’s conference. First, I would like to point out that just by walking down the hall, I was able to pick out her locker without having to read the name on it. It was the one with the shoelaces and paper sticking out the sides! Brianna had to write an assignment about Bravery, Friendship, Fear, or Occupied. Here is her writing…

I was very scared when it was 2006 and my baby sister Dani stoped breathing at 5:00 am we got dressed and rused to the enmarcay room. At first I thought Dani was going to die so did my sister but I was only 5 or 6 so part of me cared the other didn’t. I was still little so I did not know what to do. After 30 mintens or so my mom came to talk to me and my older sister. She didn’t die but she got brain damge. We are still trying to get her better. Back when this happed she was 1, now she is 4. The nurses mad a mistake if you were woudering how she got it.

This breaks my heart because I can’t shelter Brianna or Kaylee from all this hurt in our family and they shouldn’t have to worry that one day their little sister may die. I hope and pray that this experience will be a positive one for them and not affect them in a negative way.

No news is good news from us…

Wow, can’t believe that this is my first post for the month of October. Sorry, about that. Dani has been good, ha , for once but probably won’t last. She was scheduled for her Baclofen Pump surgery. Yeah, we finally got her up to the acceptable weight. Dani is experiencing more and more intense muscle spasms. They once again wake her up in the middle of the night. Of course, it gets us up too. We have seen a little increase in the intensity for her seizures at times. Dani has been healthy so far this season, not even a cold yet. KNOCK ON WOOD. Dani’s doctor cleared her for surgery. Dan and I made arrangements for the girls and started the fun task of packing. Only to find out the day of us traveling to St Paul, her surgery was canceled. There was no room at the Inn. The PICU was closed due to H1N1 and would be closed all week. Do you know how hard it is to go to work on a Monday when you already had the mindset you were going to be on vacation! We have not rescheduled Dani for the surgery because we are looking at other options for her surgery. It seems I must have been a little “vocal” about her surgery being canceled that it opened the door to a new neurosurgeon in Sioux Falls. (Me vocal? Ha) I am in the process of getting a copy of her extra “tiny” medical file from St Paul to see if the surgeon in Sioux Falls will take her case on. Dan and I are toying with the idea if he does take her on, to have a dentist cauterize her gums and clean her teeth. Her drool is getting ridiculous again but we will not put her back on that Robinul. That caused too many other issues for her.

We have been having our fun time with the nurses. Only fired one. This is a huge improvement for us! She was a TV junky that gave Rex more attention than Dani. I think Rex actually went into withdrawal after she was fired! I am sorry, I will not have a nurse that does not have enough respect for Dani just because she can’t talk and to leave her in her bed ALL day.

 Kaylee is adjusting to 6th grade. Wow, time flies. And as any girl in 6th grade, we are experiencing the “friend issues.” Kaylee seemed horrified when I told her it is only going to get worse. Hopefully we can work through them. Kaylee quit band, seems this “friend” that we do not like said “Band is for nerds” and that was enough for Kaylee. Since she quit on the fly and didn’t tell us, she lost her dance privileges. Tough learning lesson for Kaylee.

Brianna is a 4th grader. She is my tomboy. She just finished up Fall Soccer. Kaylee and Dan both agree that there is entirely too much running in soccer. Dani was able to attend a couple of games. We missed the cutoff to get her in Basketball, so hopefully we have a couple of quiet months? Dan got the girls addicted to Sims. They recently upgraded to The Sims 2.

The girls are ready for Halloween tomorrow. Both were upset that Dani is going to be Batgirl, AGAIN. Like, why would you do that Mom? Sheez, you’d thought that I committed a crime or something. I will post some pictures.

On Tuesday, it is Dan’s and Bean’s birthday. Brianna is going to have a sleepover next weekend. Kaylee turns 12 on the 28th. Yes, we always go broke right before Christmas. Didn’t plan that very well at all!