Monday, May 19, 2014

Under Construction...

It's been a couple of weeks since I've updated because we've been under construction around here! Life has been going on at full speed, but we're dodging dust bunnies and trying to get rooms back in order in the meantime.  Max is snoozing after his weekly massage therapy, which is a new benefit of the Medicaid waiver he's recently been put on.  This little afternoon snooze gives me a few minutes to write a few blog posts to get up to date!

**Aaaaaaaaand five hours later I am starting to write again.  Max only snoozed for a few minutes.  Now he's enthralled with one of his tv shows, Top Gear UK.  He is wearing his "I AM THE STIG" t-shirt.**

Now, back to catching up.  I think we'll start with Max's "vacation" week.  While our house was crawling with construction hullabaloo, Max and I stayed in a vacation apartment downtown.  This was no holiday, or staycation.  We needed clean, quiet rooms where his nurses could come, since they don't get paid time off.  A week off could mean they needed to find another kiddo to be a nurse for, and we didn't want that.  We needed a kitchen so we could make his food every day, and have a place to hold all his medicine.  We needed to keep Max away from the dust of deconstructing his bathroom, and the installation of the new shower room, track/lift system, and widening his doorway.  We tried to get a hotel near our house, but as it turns out, it was the one week of the year that everything in the north Denver area was booked.  It was seriously bizarre.

We got to our apartment and found it to be quiet, but not so accessible for parking. It was easy enough to get Max out for some exploring.  Too bad the weather didn't cooperate.  It was too hot the first part of the week, and too rainy and cold the last part of the week.  We took him out one night when daddy came to have dinner, and again one afternoon when the weather was just right to get out for a walk along the river.

We were very near the new train station, and Max really loved hearing and seeing the trains while we were down there.

Nighttime in the city...he LOVED it!

He got annoyed with me for turning him around to take the picture while the train was going by.

The Platte River was roaring from the rain we had in the week.  

But we found a quiet spot to watch it roll by.  

We stopped for a city shot, but then it started raining on us again, so we headed back.

The highlight of one afternoon was getting to see Max's friend, Lily, on headline news talking about the fundraiser she started for him.

We worked on a couple of projects with the free time too.  Here is his holding his beads from the Beads of Courage program.

Even Max's speech therapist Miss B came for a visit.   They had their own special project to work on.  I had to leave the room, but got to see the finished work on Mother's Day.

He came up with the words, the color of the card (notice his favorite color) and butterflies and flowers.  I'm sure if B had had Batman stickers I would have had a Batman Mother's Day card.
Mother's Day was going home day, and full of cleaning and getting Max unpacked from the week.  You can see here he was happy to be going home after a week away from his usual surroundings.

Going home on a snowy Mother's Day. 

It was good to be able to get away from the commotion of construction, but was really eye-opening as far as what travel would be like with Max.  For all the times I think, we should just throw a bag in the car and go for the weekend, I saw this week away how that just isn't a reality for us.  We will keep working to figure out a way to take him places.  We may just need a tour bus to make it happen!

**Just another 2 hours before I could finish this one post to start to catch up.  This is why it is so hard to get an update out right now!  Today and tonight weren't even that busy!**

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