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.

Back to School...

We're starting slow with school this week. Max chatted with his friends, and listened in on story time yesterday and today. And today, his teacher came to do a quick lesson on "I Am", and counting. When it was time for him to fill in the sentence "I am...", he said "done". HA! Oh well, we'll get back to a normal schedule soon.

They ended their time like they usually do, reading a chapter from Curious George. This time, little George got in on the action too.


(The picture is so grainy because I took it with my computer as to not interrupt their time together. )

Coordinated Care...

It's been a doozy of a week since we've been home. While it's been wonderful to be home, it hasn't been relaxing!

The schedule we've been on to give Max his antibiotics every 8 hours has been pretty tiring. I would stay up until almost 12:30am to give him his final dose, then we were up again at 6:00 am for his first dose. Pair that with round the clock tube feedings (which he's still working up to his regular schedule), and I've been pretty stinking tired! Catching up with housework after being gone for almost 3 weeks was a chore too. Then, Monday, we had to take Max into the ED at Children's because there was a site on his incision that looked infected. This was one of Steve most exciting visits, as he got to "assist" the surgeon in checking the incision for infection by holding Max while they lanced the scar area. Ick - Ick - Ick! I don't handle blood on most occasions, but blood on my baby and I'm a bowl of jelly. Luckily it was not infected, and Max didn't feel a thing, thanks to the magical emla cream. And I didn't pass out, but I did get a glimpse of what was going on and I couldn't shake the wobbly feeling for a while. ICK!

This morning we had to go in for his follow up CT Scan. They wanted to get a good look at his abdomen to see if the infection and enlarged intestines had cleared. We were down to the hospital by 7:00am, and back home by about 9:30am after the quick scan. While home, we let him rest a bit, and ate our lunch before heading back down to Children's for our follow-up appointment with his pediatrician. A last minute scheduling conflict let us get in to see her rather than the nurse practitioner he was scheduled to see tomorrow.

I want to stop here and talk a bit about how amazing our pediatrician's office is. Max goes to the Special Care Clinic at The Children's Hospital in Aurora, CO. All of the doctors in the clinic specialize in treating kids with complex medical needs. When we came in this afternoon, we didn't expect much more than a simple follow-up after his hospitalization, but we got a reminder of why we drive 30-45 minutes each way to see all of his doctors at Children's.

When his doctor came in, she brought with her a psychology student who was shadowing her. She especially wanted to introduce her to Max and to us. She wanted the student to see how although Max doesn't talk, he's very smart, and knows everything that is going on. She wanted to show her first, that you can't underestimate the child because of what their outward abilities may look like. And, she wanted to show her how Max interacted through the appointment.

Then she talked to us about coming in the Spring to talk to medical students, residents, physician assistants, physical therapist, and others about Max. We'll work on our "talk" to them, but again, she wants these new students to see that Max and so many other kids like him have so much more going on than at first glance.

Then we got down to business. We were chatting a bit while Max's IV's were finishing up. She checked the radiology report from earlier in the day. He was given a good report, and everything looked cleared up. She checked on his incision, and the new area the surgeon reopened earlier this week. She asked how his seizures were (still no seizures...holy camoly we still can't believe it...through this all!) and how he was sleeping. All with a good report.

At that point, the doctor had the nutritionist come in and talk about his food, and she left to order his labs and to talk to Infectious Disease about their recommendation about the antibiotics and the PICC line. We chatted with the nutritionist about his feedings, and about the new formula recipe we're using. She had been working closely with the Metabolic Clinic while we were inpatient to change his formula around to work with protein restriction for his metabolic disease.

Once we got all of the nutrition part sorted out, a resource nurse came in to pull the labs from his PICC line, rather than needing to go to the outpatient lab, and have him get poked. While she was drawing the labs, his doctor came in and said that Infectious Disease were pleased, and we could discontinue the antibiotics, and the nurse could pull the PICC line when she was done drawing the labs. Waaahoo!

The rest of the appointment was a breeze. We got the PICC line out, and chatted a few more minutes with his doc, since HOPEFULLY we won't see her again until Spring! But, I left there with such an appreciation for Children's, and all of his doctors being there and working so well together through the Special Care Clinic. In those couple of hours in the clinic today, we got sorted out with radiology, got blood draws, and the picc line removed, talked to his nutritionist, who is talking with metabolics. If we were still with our old pediatrician's office, each one of those things would have been a separate event, and different clinics. I'm really thankful we've got such a great solid base to coordinate all of his care.

I'm also glad to be getting ready to go to bed, and not having to stay awake until 12:30am to finish IV medicines! He will continue eating by the pump for a while longer, as the CT Scan did show his intestines are still not completely back to normal size, and we don't want to overload them with too much food at one time.

Hopefully it won't be another week before I update. But, who knows! I am still catching up on everything, and it seems the more I check off my list, the more I find needs to be done. I'm just thankful we're home, he's feeling much better, and he got such a good report today.

Now this sleepy momma is going to bed!