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!

**website changing**

To access Dani’s journal and website, please use the following website:

https://fortheloveofdani.wordpress.com/

Within 48 hours the www.fortheloveofdani.com will no longer be active.

Better late, than never…

Wow, it’s been over 2 months since my last posting.  Where has the summer gone?

Brianna played her 1^st year of softball.  She had fun and was actually quite good even though she throws like a girl!  Haha, that was our joke, she would get quite offended when I would tell her that, BECAUSE SHE IS A GIRL.  By the end of the season she got better at taming down her wild girl throws.  She did inform me that she would like to play again next year.  Dani was nice enough to grace everyone with her presence at a few of the games.  Only once did she actually make it through the whole 5 innings!  Miss Kaylee was cheering on the sidelines, well, she was there in body form.  She usually was reduced to pay attention to the game once her cell phone died!  Oh the joys of sisters!

Kaylee, on the other hand, didn’t want to take softball.  Why?  Well, duh, that involves running!  We quite aren’t up to speed on that one yet. 

In less than a month, school starts up again for the girls.  Pretty sure Dani and the nurse can’t wait either!  Then they get the nice, quiet house back again.  Kaylee will be a 7^th Grader and Brianna will be a 5^th Grader.  Where does time go?  Dan and I have decided not to send Dani to Kindergarten.  We feel that it would be more stressful and hinder her quality of life by forcing her into a crazy, hectic kindergarten routine.  She would be exposed to more germs and sickness, that I don’t think she has the strength to fight.  Let’s face it, she gets out of her “routine” when relatives come to visit, let alone, taking her out of the comfort of her own home and putting her in a room full of 5 year olds!

Speaking of 5 year olds.  Dani celebrated her 5^th birthday on July 1^st!  I can’t believe she is 5 already!  We celebrated her birthday at the house with Grandma Donna and the Heier  Family.  Tony and Grandpa Durand spent the 4^th in El Salvador!  They brought Joana back them!  It was over a year that she was in El Salvador.  Hopefully, soon, Maria and Jasmin will get to come back.

Dani had a routine visit with 2 specialists.  The first one was with Dr. Doubledee, her GI dr.  She only gained ½ pound in 6 months, so he increased her feedings.  It was an adjustment for her, but she seems to be tolerating her feeding now.  The second appointment was with Dr. Veloria, her pulmonologist dr.  He did suggest Robinul for her increased secretions, but we declined this medication.  Dani has been on this in the past, that gave her kidney problems.  I am sorry, I would rather deal with a little extra drool than have to cath my daughter whenever she had to pee!

It has been a tough summer for us.  The company that Dan was working for, closed its doors.  He was out of work for little over a month.  Thankfully, he has found a new job with not that much of  a pay decrease.  At least it is something!  The way I look at it, you just need to roll with the punches, no sense getting all worked up.

On Sunday, we are having a girls weekend and heading to the Cities.   Dani has an appointment at Gillette Children’s with Dr Petronio, her neurosurgeon on Tuesday. (Sadie, we would love to see you if you will be around)  The girls, Grandma Donna and I will be leaving on Sunday for a “mini” vacation.  (Traveling with Dani is NOT a vacation)  We are going to complete our school shopping and go to Nickelodeon Universe.