Max in photos...

When Max finished skyping with his class this morning, he was being pretty silly by throwing his leg over his chair, so I thought I'd get out the camera and show you all our little gymnast.



But wait...do you see what I see? Zoom in a little...



A dog, a lazy lazy dog, who loves to find the warmest spot in the house and make it her own.



If spit bubbles gross you out, sorry, but this may be one of the most gorgeous photos of my kid ever. He almost never has his lips together, but he's really liking the feeling of playing with bubbles on his lips lately.



Oh hey Momma...what are you doing?



Check out my new teeth! I'll still have my gap toothed grin!



Okay, I'm done taking pictures, I'll ignore you now.

Pfffftttllll....

That's my try at typing out the sound of a raspberry.

Because that's what I feel like today.

There are times that my super powers leave without warning. It leaves me aimlessly going through the days.

Wake up, much earlier than I want, far grumpier than I should be.

Move Max, change his diaper, feed him, give him medicine. School. Therapy. Repeat.

Try to come up with something for dinner, maybe a load of laundry, maybe cleaning up after the foggy day.

Go to bed, much earlier than I want, far grumpier than I should be.

I don't like it when I've lost my supermom mojo. If you find it, will you send it back?

Max's song...

Max has been given a grant through the Professionals Miracles Foundation to help pay for his music therapy. This means, we are able to have his music therapist, Laura, come weekly rather than just twice a month!



Yesterday, he was really enjoying his time on the keyboard, playing along to the "Max Song" that Laura was singing to him. I loved how much he was watching the keys, and using his hands to play along. The camera battery died to get a good video of him jamming on his drum after the keyboard, but Steve got the last bit on his phone video.





I'm so thrilled we're able to do music therapy weekly now! It's one of his favorite things all week. He insisted he needed to play his drum in physical therapy, occupational therapy, speech therapy, and school today. They have each incorporated it into their times because they know music is one of the best things to motivate him.

Real Reality...

The reality of Max's life, he needs a lot of special equipment in order to go about his daily activities. I'm constantly moving around wheelchairs, and seats, and wedge system, and a feeding pump IV pole, just to make room for his next activity.

Those are the big pieces...then we have school supplies, and diapers, and blankets, and musical instruments, and toys...everything catered and adapted to Max and his needs.

It's obvious, sometimes glaring, and a reality we live with. These giant, glaring reminders that our lives are in fact, not as normal as we can try persuade ourselves they are.

But, sometimes every once in a while, the light hits the room just right, and I'm reminded that even with all the equipment, and diapers, and feeding supplies, that deep inside we truly do have a 7 year old who would run circles around me if he could.



So very age appropriate. So very all boy. So very not a baby who is stuck in chairs so he can sit up on his own, who takes formula through a tube in his stomach, who has tools to hold a crayon for him, who wears bibs to save his giant onesies from the slobber he can't control.

Just a boy...a real 7 year old boy with his cars. Leaving them in the floor for me to step on, and trip over.


That's always a happy reminder.

Such a big guy...

Last week, Max got back to school with his friends on Skype. He had some good days, but some days were a little hard to make it through the whole hour.



One of the assignments of his classmates was to write about a time they went somewhere fun.










I try to adapt Max's work to what his classmates are doing. Sometimes, it means he draws pictures about the story his teacher read to the class. Sometimes, we write out stories, or words they are focusing on. Max is not able to do any of this independently, so I help him by guiding his hand to draw the picture or write the words. Sometimes though, I put a velcro strap around his hand and the tool he uses to hold his crayon, and let him go at it.

The lower left part of this picture is what we get when Max goes at it by himself. These are his attempt at the letter 'a'. The right side of the picture is with minimal guidance.



One of his classmates really wanted Max to "practice on his numbers and writing his name" .



He worked really hard at this one, and it was also very little help from me.



Come on...just...what a big guy!

Snuggle bug...

Sometimes, even Max gets cold.



Only sometimes though.

Snow snow snow...

It seems the snow has finally found us. Just in time for us to be home, and Max to get to play in it.



How exactly does a kid who can't really get out and play in the snow, play with snow? We bring it to him!



We even make a schol lesson out of it.







Max made a snowman! That matches his little light snowman he got from his buddy Calvin.







And maybe someday, he'll get to try his new snow boots out for real...

Getting out again...

I have been a little surprised at how tired Max is still getting since being home. I guess if I had my belly cut through I would take a while to get back to normal too.

On Saturday, he was acting a little more chipper, so I asked if he wanted to go to the park. He hasn't been to the park since his birthday, and he was very happy to go.

We hurried around and got ready to go before he tired out. It was a pretty mild morning, but the cold was moving in, so we just took a short walk around the pond. He LOVED being at the park. And it was good to see him enjoying something he loves again.







There wasn't much snow left, but he wanted to go through it in his chair.


We got plenty more snow the next day. After we were done ith the park, we stopped by his pizza place to see about going in...again he hasn't been there since his birthday. But, it was pretty crowded, so we got our pizza and headed home. But...just being out for a couple of hours...all that sitting up, and being outside was more than this little monster could handle.

This was him most of the rest of the evening.



Resting, and giving the time he needs to get better is all we can do...but getting out to the park, in the fresh air and snow is a good start.

Hospital photo dump...

Max has a little break this morning before his week explodes with activity, so I thought I could get a quick post up. All of his therapies will start back up this afternoon, and he'll have two days of school, along with his regular morning Skype sessions with his classmates. But, school is out today, so no Skype this morning.

I am looking through photos and see a lot I didn't share while he was in the hospital. I guess we were just a tad bit busy! But, some really neat things happened among the not so great things in those two and a half weeks on the 8th floor of The Children's Hospital.

The day that went crazy with Max stopping getting sick, but starting blowing up like Violet Beauregarde, was also the day that police officers from all over Colorado showed up to give kids gifts. It was quite the precession and we had a great view!


Speaking of blowing up like Violet Beauregarde....I realize I never put a picture up of just how big our little guy's tummy got. This was mid-day that day. He got bigger, but with all the drama and emergency meetings resulting in emergency surgery, I just didn't get any better photos than this.


If that looks just a little fat, remember that Max's stomach almost never is taller than his ribs and pelvis...he's a skinny minny!

Here's our guy right before surgery...he was in so much discomfort. I was a crying blubbering mess, and Steve had this look on his face most of the time until after surgery. Max had just formed a fever too, we were quite worried especially because no one could tell us exactly what was going on, they just knew they needed to get in there and fix it.


This is where we hung out while waiting for about 3 hours...maybe 4, I don't remember now. We were both exhausted, but only Steve has the ability to sleep anywhere, at any given moment and wake up fresh and ready to have conversations. So, he rested on a certain Monster's monster. I stayed up with that same face Steve had on in the previous photo.


The day after surgery, we had a visit from a few of the Colorado Avalanche hockey team. I'm sorry to say I have no idea who any of them are. Except the guy in black, I believe is a coach. They gave Max a little puppy and my friend Jenny got the signed cards to take home, since they actually watch hockey. It was sweet for them to come visit all the kids, and fun to watch them try to squeeze their giant hands into the gloves to come into his room.


I can't forget the care cards! Thank you to everyone who sent them. His doctors, nurses, techs, cleaning people all stopped to read them every day. The comment was always the same, "Max you have so many friends who hope you get better!". We filled two doors with the cards.


Another group giving out toys to the kids had a very special little George for Max. I kept forgetting his Curious George, but when I saw how perfectly this fit in his bed, I knew it was the right hospital George to have.


Steve's co-workers sent Max a little friend to keep him company while he got better.


Ha! Check out that nose!!


The Trans Siberian Orchestra did a concert that Abbey and Steve went down to listen to. They said it was only okay, so I don't feel like I missed a lot. But, again, cool that they stopped by the hospital to play for the kids and familie.


I think this was the day our guy got very sick. The infection peaked and he was having such a hard time breathing. But, that penguin helped him out a lot.


This was his Christmas blanket. It's Snoopy and Charlie Brown, and was part of his bounty from the Snow Pile gift shop I got to attend to pick out gifts for him since he was in the hospital during Christmas.


He was so excited to get balloons...and so much yellow!


This is how I knew he was better...much much better. This is how Max sleeps when he's most comfortable. Arms up, legs propped up. We got to go home a couple days later...



The one and only photo of me in the hospital...well minus the hundreds of minutes of video Abbey took of me eating, or talking, or whatever else she took video of with her new ipod. I was getting ready to learn the caps on Max's PICC line...and Steve had the camera.......I think I got more silver hair this visit...and more worry lines.



Abbey tried every time it came in to get a photo of the helicopter. She got one...minutes before we were discharged to go home.


This met us at home our first morning home...it didn't stick around very long.


I think that's all the hospital photos. I haven't yet put up a photo of the incision...mostly because it made me nearly faint TWICE when I saw it. It is not gory or gross, I just can't stand the thought of cuts and surgery...especially on my boy. So, if you want to see it, I'll email it to you. We'll get back to our regularly unscheduled programming now.