Our Last Day at Disney

Today was our last day at Disney before we head out to the next phase of vacation; the beach.  Disney was even more crowded than normal so we didn't stay all day this time.  We hit the big rides we had missed on Thursday, then headed to downtown Disney for shopping and dinner.  Poor Madi threw up everywhere, in the restaurant, right before dinner came.  We paid our bill, threw all of our stuff in to-go boxes, and headed for the hotel.   Of course our hotel was on the other side of security, and the lines were astronomical.  I talked to a security guard about a quick way across, because Madi and I were both covered in throw up, and at first she refused to let us across quickly.  Finally she decided to escort Madi and I across, but the rest of the group had to stay and wait in line, which is fine.  She offered us a nurse, but I was anxious to get back and be by Madi's oxygen tank and rescue meds just in case of a seizure (though I do carry rescue meds on me at all times as well.  I carry her clonazepam (oral), but had diazepam (rectal) at the room).  I was able to get Madi back quickly and clean her up.  She was in good spirits the whole way back, so hopefully it's a fluke and she will wake up feeling back to her normal self.  We had a nice, quiet evening in the room watching TV and resting, which was just what we needed.  Tomorrow we drive to Carlsbad and also will get to meet up with my birth mom and half sister for lunch (hopefully.... I'm hoping Madi wakes up feeling better, though she kept saying she didn't feel sick as it was), so we are excited to see them.  I'll update later with pictures of the BEACH, wooo hooo!!!

Running Away Day 2... California Adventure

Today was day 2 of our yearly vacation and we spent basically the whole day in California Adventure park.  It was crazy, crazy busy again, but we managed to get on most of the rides the kids were hoping to ride.  Keeping people from bumping in to Deena has been interesting, but with some gentle assertiveness and my protective shield (aka my arms) we have done ok.  People really don't watch for wheelchairs well, and Deena's is low to the ground, so that makes it challenging, especially when it's so crowded. 

Tomorrow is our last day here before we head to the beach.  The kiddos are pretty excited about our next phase of vacation as well.  Here are some photos from our fun day...

Conner, his friend Ethan, and his "cousin" Keegan

Rob gave Madi a Listerine strip right before the picture.  I told him she wouldn't like it, but somehow she ended up with it anyhow.  You can see how well that worked out for us...

These 3 are inseparable  

Deena and Aunt Adella (Adella and I sandwiched her in to keep her safe)

I usually don't let the girls wear makeup, unless we are just playing around with it.  When we do, though, I keep my red lipstick away from them.  Today I let them wear it (though Ramya didn't want to) because hey, it's vacation, it matched their cute dresses, and you only live once.  They were super excited.  I had to re-apply about 5 times.  They wanted a photo to remember what their lips looked like.

I thought we were going on the tires ride, but apparently it's now the singing cars.  The kids liked it anyhow.

We Ran Away to Disneyland

I'm happy to say that we ran away (again) for our yearly California trip.  It was totally nuts trying to cram in all the appointments, injections, appeals, infusions, therapies, etc.. to be able to go, and I had a lot of late nights, but we made it, and that's what counts! 

Today we went to Disney and had a lot of fun.  My parents, aunt, cousin, and our friends Rob and Ethan joined us too.  It was crazy crowded and hard to maneuver in, but the kids loved the rides.  This was Deena's first trip to Disney and, though it was a little overwhelming for her, she really loved it.  She giggled on all the rides, loved meeting the princesses, and did well with the masses of people.  Tomorrow we are headed to California Adventure and hopefully it will be a little less crowded (not likely but one can hope!).

I'll share some photos from our trip, but before I do, here's Deena giggling on her first ride on the Teacups.  If this doesn't cheer you up, I don't know what will!

Here are some photos of the rest of our trip....

Butterfly Wonderland

Friday the kiddos and I packed up to head to Phoenix.  My Aunt was coming in town for the weekend from Hawaii and we were really wanting to spend time with her.  Additionally, David had a stock conference in Vegas and I needed to take the kids somewhere where I had support in case of an emergency.  We are also headed out of town and I wanted to get Ramya's next Lupron Depot Pediatric injection before we left because it's due right in the middle of vacation.  So basically the timing was perfect for a quick trip down and we are having a lot of fun with family!

Today we all went to the Butterfly Wonderland museum and the kids really enjoyed it.  We had been there before, but I always had at least one kid running from the butterflies when they came close.  Now they all love the butterflies and even dress in bright colors to try and attract them.  

Here are some photos from our time there...

Fun at the Farm

There's a cooperative farm down the road from us that offers you-pick produce days on Tuesdays.  We have been wanting to go, but usually David has softball games on Tuesday, in addition to Ramya's feeding therapy, and the day ends up being rushed.  David had an off week, though, so we decided to head over.  Deena was feeling great after her infusion, and the kiddos needed to get out, so it worked out well.  The kiddos had a blast and tried all of the veggies we picked.  We can't wait to go back!

Infusion Number 3 in the Books

On Monday, Preferred Home Care called and asked if they could come on Tuesday to do Deena's next pamidronate (PAM) infusion.  Though it was short notice, it actually worked out well because we are heading out of town and I'm trying to get everything done before we leave.  The promised to be done in time for me to take Ramya to feeding therapy, so I agreed.  Of course that meant I was up until 2 am cleaning and sanitizing the house, but such is life (I keep my house picked up and clean, but probably go overboard for infusion days ;)).

Deena did totally amazing, as always.  The nurse was able to get the IV on the first try, plus I had numbed Deena's arm, so she didn't even flinch.  She's such a tough girl!  

We had a visitor that day, Madi's BFF Gloria, and the girls had fun homeschooling, playing, and watching movies while Deena was receiving  her infusion.  

I can't wait for her bones to keep getting stronger!  

Fun at the Reptile Show

(Typing on my phone again so please excuse errors again ;))

Last weekend we went to the Tucson reptile show and had a blast!  We only came home with one new pet, so I think we did pretty good.  David has been wanting a snake for quite some time now, and finally got his wish.  He got a milk snake, which the kids named Milky Way.  We are soooo done with pets now.  Here are some photos from our adventure.