Dani + Traveling = Not Fun

We survived our trip to the Cities!  Thank you Grandma Donna for coming with us.  We left on Sunday and hit some construction on the way there.  We just chilled at the hotel to let Dani recover from the ride.  On Monday, we hit Albertville to try to complete our back to school shopping.  Kaylee and Brianna really weren’t into shopping because they were miffed we didn’t go to the Mall of America so they could ride rides!  So, I focused on Dani and found her some clothes.  But soon, Dani was beginning to let us know that she really didn’t care for the shopping either.  Or maybe it could have been the fact that someone turned the heater on in the back of the van and she was hot?  Either way, we gave up and headed back to the hotel so Dani could get her nap in.  Grandma Donna was nice enough to “offer” to stay behind at the hotel while Dani napped and I brought the girls to ride their rides.  After 5 hours of watching them, I was ready to call it good.  Oh well, least they had fun.

Today, Dani had her appointment with her neurosurgeon.  Little Missy got the go ahead (again) for the Baclofen Pump surgery.  Selfishly, I wanted to wait until January to complete this, but he refused to do a surgery on her in midst of the cold and flu season because of her being “frail”.  (I wanted to wait until I had more vacation time and hopefully Dan would have some vacation built up by then so he could go with.)  He said we had basically two choices, September or Spring.  I think it amazes me when he refers to Dani’s clonis (tremors) and tone as severe because by time he sees her, she has been using Valium.  We give her the valium to keep her calm and to be able to tolerate the ride to the Cities.  Could you imagine how “severe” Dani’s clonis would be if he saw her without the valium?  But I will say, it has been getting worse the past few weeks.   The plan for the next couple of months is to pack a few more pounds on her and then surgery this fall.  It will be a 5 to 7 day hospital stay with at least one day in the PICU because of Dani’s past reputation.  The whole idea is to improve her quality of life and to take away the majority of her muscle spasms, tremors, and clonis.  It will not take away all of it, but the majority.  And after sleeping in the same bed as her for 2 nights, this poor girl has many of these “episodes” that wake her up many time during the night.  I am surprised if she gets any sleep.

The girls decided to go back to Grandma Donna’s for the rest of the week.  Nice and quiet in our house at the moment!  I have the dog sitting on my feet and the cat is sitting on the desk staring at my fingers as I type.  She is waiting to pounce on my fingers.  Little does she know, I won’t fall for that trick again!