Photo weekend...

We had a full weekend...and lots of photos from the weekend. I'm trying to keep my head above water this week, so I'll just share the photos.

Angie and Abbey playing Just Dance...


Abbey trying out her new wheels at the park...


Awesome storm clouds...


Beautiful Summer sunset...


Abbey and the sunset...


Me trying again to take my own photo...at least we're both in the photo...


The only photo of Max I have this weekend...he had terrible allergies, and couldn't leave his eyes alone...hence the sock on his hand!



We went up to Frisco (close to Breckenridge) for a BBQ Festival with Ang, Dan and Addie on Saturday. It was cooler up in the mountains, so we were able to stay out with the kids a bit longer...

And Addie has taken to singing Hall& Oates classics...and demanding Auntie Deanie "snaps" along...


Abbey terrorizing Addie...


Checking out the original jail-cell in Frisco...


And original school...


And an original cabin...Abbey pretending to wash her hands...


And our last stop...our rock spot...9 years on....






Where did the time go?

It's time for music...

We have been trying for a long time to get Music Therapy added to Max's weekly therapies. It is offered as a special service for the Medicaid waiver he is on, but because music therapists are certified at a national level, and don't have state licenses, Medicaid won't pay for them.

But, I knew Max would love music therapy, so I got one to come over any way. It may just be one of those things we have to find alternative funding for.

When she got here, Max was eating and listening to his opera music. I put it on for him to sing along to while he was eating. She and I talked about his likes and dislikes. His abilities and what he struggles with. Then she went out to get her instruments.

I sat Max on my lap on the floor, and she started with a "hello" song on the guitar. At first he stopped his constant moving and turned his head to listen, while looking out the window. But when she started singing "hello...hello...hello.....it's time for music!", he signed MORE! and looked right at her and the guitar. So she sang it again, and said, "Max, you can sing too!", and he did.

"hello..."ooooooh"...hello..."oooooooooh"...hello "ooooh-oooooooh"...it's time for "you sing it Max"... "ooooooo-iiiiiiiiiii - oooo-iiiiiiiiiiiiiiiiiiiiiiiiiiii". "

Then she continued strumming on the guitar, and took his hand to have him strum. He opened his fingers and stretched them out to play, as she sang again. And he strummed and sang with her.

Next it was time to play the drum. BOOM BOOM BOOM!!!!! He LOVED how loud it was! Steve, unfortunately, wasn't prepared for a rain dance when he was on a conference call...oops. But Max had a blast hitting the drum with the mallets and boom-whackers. We would finish and he would drop the mallet and sign MORE!!!

We played the guitar one more time, and she made sure it was resting on his feet. At one point he edged his feet up onto the hole int he guitar, and wrapped his monkey toes over the edge. It was like he was trying to get inside of it. He was so calm, and continued singing along with her, only this time it was "good-bye to music", and he strummed with his toes.

After music, I put him back in his chair, and told her we would work on the funding portion, because he obviously loved it! She leaned down to say good-bye to him, and told him she would see him again soon...and then he broke our hearts and puckered his lip out and started crying and started signing more, more, more! He didn't want it to be good-bye to music at all!

I have NEVER seen him cry at the end of therapy, because he wanted more! It's usually quite the opposite, crying, pretending he's sleeping, telling his therapists he's "all-done" before they even start. But he wanted more more more. And he was doing more with his hands and calming his body more than I had ever seen in any other therapy. It was unreal!

So, we'll work on getting it funded, or we'll find a way to pay for it ourselves. I truly think this is going to be a huge part of his progress. And who doesn't need a little live music in their house at least once a week?!

The scent of a memory...

About a month ago, Steve sent me a link to a set of cologne's he was wanting to try. He's been on the search for "manly smells". None of this flowery stuff for him! I ordered a sampler set from Portland General Store, on Etsy. This way, he could try out some of the fragrances, before choosing the one or two that best suited him.

When they got here, I got to work opening the little sample containers, without spilling them everywhere. (Really...why haven't they perfected a better sample bottle for perfumes/colognes?) I opened one..."mmm...it smells like my dad." ... "mmm...smells like a leather store." ... "Whoa! It smells like my Great-Grandpa...he smoked a pipe!"

The next one I opened, my nose started to tingle, and I got a lump in my throat and tears brimmed my eyes. "It smells just like my Grandpa!". Now, Steve hasn't spent any significant time with his nose buried into my Grandpa's neck, so it was lost on him. But, oh...it was like a hug in a bottle!

I have since then, gone to that sample bottle from time to time and put a dot of "Moss" on my hand to sniff at throughout the day. It's a small way for me to think of "home" and the hugs I miss!

Tonight, as we were getting ready to cook dinner, I got out of the the smoke cups we picked up at WholeFoods last time we were there. We were cooking salmon, so we chose the mesquite flavor. I was busy in the kitchen, but when I walked out to check on the grill, I was hit with the smell of "home" again.

"Oh, it smells like Grandma and Grandpa's...at our place in the woods!" . Grandpa would often cook outside there he would have a can of wood-chips soaking in the water. Our breakfasts outside...camping in the rain...walks down to Jack the Donkey...putting rocks in the tree stumps...checkers at night...painting rocks...listening to mocking birds...Grandpa telling us bible stories before bed...Grandma making toast in the oven...and fishing at the lake.

So, tonight, I'm sitting with the windows open, letting the last of the mesquite cup waft into the house...with a dab of "moss" cologne on my hands. It's absolutely not the same as a hug and sitting next to Grandpa...but it will have to do until I can get home for the real thing. Now, if I could just find the equivalent to Grandma...I might just have to go to the mall and ask for a sample of her perfume, and eat a piece of lemon cake. ;)

The concert that was not meant to be...

Back in March, we bought tickets to see Sting at Red Rocks on June 9th. He's performing with the Royal Philharmonic. They weren't great seats, but I was really excited to go.

Then our schedule for our trip out to the study Max is in at the NIH got finalized, and we decided in order to get there in time, we would need to be driving on the 9th. So I put the concert out of my mind.

Then Max got a couple of overnight stays at Children's...which almost always puts his doctors on high-alert. This means we were asked to please not travel with him right now. That meant that visiting with family was off...visiting with friends was off...but the concert was ON!

I wasn't holding my breath for the concert, as Max is still full of surprises, but he did great this week, so I was comfortable with us going. Then yesterday happened.

With Max having been in the hospital a couple of times in a week...Steve traveling to a conference...and another time for meetings this week, his work all came tumbling on top of him yesterday. He was in 11 straight hours of meetings. Around hour 8, I posted the tickets on our neighborhood email list.

The concert didn't even start until 8:00pm. And Steve was due to be up and out of here again this morning at 5:00am. Nothing was adding up to go to this concert.

A guy answered the ad, and came and purchased the tickets at the same price we paid for them...and I kept our date night scheduled. Just not out amongst the stars with the Royal Philharmonic and Sting serenading us.

My friend Susan came over to sit with Max, and Steve and I took that ticket money to one of my favorite restaurants in Denver, Table 6! It is one of those only go there once a year, special event, type places.
It's in the neighborhood I would most love to live in Denver, and just always an exceptional time!

Now, on to the menu choices...because I couldn't have hoped for better choices for me!

Starter:
Fried Green Tomatoes, with Watercress, goat cheese, and a Toasted Cumin Dressing

Main Course:
Roast Angus, with Spring Pea puree, and Roasted Vegetables

Dessert:
Fried Cheery Pie with Almond Milk Shake

(Steve had a Green Goddess Salad with the tiniest avocados I've ever seen...Striped Bass from Hawaii with a spinach/fried garbonzo beans and jalapeno mixture, and Blackberry Crumble with homemade yogurt and honey.)

I usually go for the "homey" version of meals when we're there...because they do such amazing things with what could be such a boring dish! Like on the fried green tomatoes, A sweet and sour goat cheese was spread on the long plate, with the 5 slices of fried tomato layered on top, then the peppery watercress on top of that, and the toasted cumin dressing drizzled over it all. If I were at home, I could have eaten another 15 of those fried green tomatoes...but in that sort of presentation, it was just right, and all the flavors went together so well!

The roast beef was obviously cooked in a red wine...I could tell by the flavor, so rich! The sweet spring pea puree was a nice change to the usual mashed potatoes with the dish. And what I thought were tiny baby potatoes, turned out to be tiny baby bread rolls placed around the dish! But the killer piece to this dish, was the fresh basil torn up and sprinkled around. The first bite I took with roast and basil, I thought, I can never eat roast without fresh basil again!

Then came the dessert choices. I hardly need a reason to have dessert, but when it comes to restaurants, I rarely get dessert. Except for this place! They make everything by hand...and I love to watch them prepare it. I had narrowed my choices down to three. The Chocolate Raspberry beneigts...the blackberry crumble...and the fried cherry pie with almond milk shake.
When Steve found out they would make his blackberry crumble wheat free, I decided on the cherry pie and milk shake.

Now, before you think I must have a bottomless stomach--quiet you family who know I do in fact have a bottomless stomach--the plates were all smallish, just enough to leave you ready for the next course. Which is my favorite kind of eating!!

The dessert was no exception. Our waiter brought out to piping hot miniature fried cherry turnover pies, dusted with almond flour, and a juice glass full of a milkshake made with vanilla ice-cream and amaretto flavor, with a candied black cherry on top. I demolished it! Out of this world perfect dessert!

After the meal, I told Steve that my dinner choices were all just grown up versions of my childhood favorites! And a perfect night out...even without the Royal Philharmonic and Sting. We'll catch them some other time...or not. If I've learned one thing with Max...hold very loosely to your plans! And make the most out of what those 'plans' sometimes turn into!

Back too soon...

We landed ourselves in Children's Hospital again yesterday. He had some vomiting, we think due to reflux, and a slight fever. We had to bring him in to see his pediatrician, and they observed him for a few hours before admitting us, because he wasn't really taking in a lot of fluids. He was just on a polycose solution yesterday, and wasn't having any wet diapers.

We were up on the floor by 6:00pm, when he fell asleep. He slept through getting an IV placed, all the doctors checking him, and alarms going off. He woke up at about 8:00 this morning a LIVE WIRE!!!! He's had 6 wet diapers...and eaten twice without issue.

I told him as he was waking, if he could eat and keep it down, and was GOOD we would get to go home and we would get pizza. (His favorite Saturday activity!)

So every doctor, nurse, housekeeping person who comes in he yells "I GOOOOOOOOO!!!!!!!". It's cracking us up. Thankfully the attending doctor just came in and got a dose of Max's goodness and said we're ready to go home, and they're getting us started.

But, because we've had 2 hospitalizations in a week, our doctors are giving us the "no-go" for travel to NIH right now. We were set to leave next Wednesday. We're talking with them about going later in the summer. But because we have to drive with Max, we have to make sure he's feeling great before we make that long trek. I have to say, I'm pretty bummed about it, because we were making this into a vacation, seeing family along the way, and visiting friends in DC. But, we'll just have to do all that later. We sure didn't want to get stuck in a little town with him having seizures we couldn't stop, or have a sick day.

We've got our fingers crossed that we're out of here soon...so Max can have his PIZZA!!!!!

For Max...

We did get outside for a good portion of the day yesterday. Max went with us to pick up a few plants for the garden...and to choose some new yellow flowers.

These are the ones he liked most...they are called "moonshine"...


And among the many other veggies we got to plant, I thought for fun, I would plant a pumpkin plant for him to watch grow until his birthday. Imagine my excitement when I found a pumpkin named "Big Max"!!

It wasn't until I got it planted that I actually read the card..."fruit up to 100 lbs"...oops!


Oh well...we'll have The Great Pumpkin in our back garden!