Tuesday, November 1, 2016

Hello 13...

Last night at midnight, Max woke up and I got to give him a happy birthday hug and kiss before tucking him back into sleep.  It's still so hard to believe we have a teenage son! As I was looking at him all cuddled up, I remembered the night he was born 13 years ago.

Max, Day 1 and Day 4,745.

 As I reflect back on today, I am struck by just how relaxed it was.  It was one of the most relaxing birthdays we've ever had with Max.  I think that had a lot to do with I let him direct the entire day. He didn't want a big party.  He didn't want me to make a cake.  He didn't want to do therapies, or school. He just wanted to do what he wanted to do, and that's exactly what we did.

I let him wake up when he wanted, which was around 10:00am.  He ate his first food and watched a little bit of his Halloween cartoons before wanting to go chill out in his room and listen to spooky Halloween music before school (yes, it's a real station on Pandora, and yes, he loves it!).  When it was time to get ready for school, I asked him what he wanted to wear as a costume.  Much to my surprise, he chose Batman.  I truly thought he was starting to get over his obsession with Batman....I think maybe he'll always have love for Batman.

He even wanted to wear his Birthday Hero pin.

His teacher had activities for him to do, but he just wanted to play with his creatures.  Max has a lot of Halloween animated creatures and wanted to show them all off.  The only thing he said with his talker was he wanted to go play, go in his van.  So we cut school short and left in his van for the train station.  It was pretty warm today so we skipped any too warm places like the zoo or park.  He was happy to visit the train station and watch the trains coming and going, and of course people watching while we had lunch.

13 year old Max with his Momma.  
 After lunch, we got his birthday dessert for him.  He wanted coffee ice cream from the ice cream shop at the train station.  Max just takes little tastes of food with his mouth so he doesn't choke.  So we just asked for a sample spoon of his ice cream and it was just right.

Eating his birthday ice cream. 
Mmmm-mmm!  

Of course, Max and Dad had to stop and get a coffee...because that's what the guys do when they're out.  We stopped and watched more people and cars go by before heading back home to get ready for Halloween!


We do up Halloween big around here because it's a fun holiday for us all.  But this year, Max was very into it.  I'd say this was the most he's ever had input about what he wanted to do for Halloween - not just his birthday.  This year, he changed his costume selection three times.  The first choice was Man in the Yellow Hat.  Then he wanted to be scary.  Then he wanted to be Batman.  The only one we didn't do today was Man in the Yellow Hat (from Curious George).

When it was time for trick-or-treaters, he wanted to get scary and come out on the porch to help Momma and Daddy hand out candy --- and scare the kids!

His costume was a guts tshirt and a brain hat.
 From 6:00pm-8:00pm he sat outside and had lots of opportunity to scare people!  He actually got a few of them really good with his disgusting guts tshirt.

Max guarded the candy!

Our Halloween selfie.

We couldn't believe he sat outside so content for two hours.  It was the first Halloween we didn't spend split between several things.  We were all together out on the porch handing out candy and enjoying the trick or treaters.  A whole gang of seventh graders came at one point and wished him Happy Birthday one by one.  They all have grown up with him, and while they all are getting older and figuring out their own new teenage experience, they are genuinely some of the kindest kids.  He was so happy to have them wish him a Happy Birthday, and of course this old witch may have shed a few tears behind her mask.  We had neighbors walk over to say hello and wish him a happy birthday, and lots of kids loved his costume and his creatures.  And just when he was ready to go inside, his nurse arrived.  He put on his scariest zombie call and scared the jeepers out of her.  Really it was his animated spider that jumped out at her from the leaves, but it got a scream all the same and made his night complete!

I'd say in all it was a great day. So great, I forgot to give him his present!  We'll get to that in the morning!  I think he's showing me life can be a little more laid back now that he's a teenager.


Friday, October 28, 2016

Goodbye 12...

Before he turns 13 on Monday, I need to put a post here marking the end of the "kid" years.

Lately, people have remarked - "13! You will have a teenager!" -  and part of me still doesn't believe it.  See, we raised a teenager already.  But he won't be a teenager like his sister was.  We won't have the same arguments.  We won't have the same successes.  We won't have the same regrets.  And we won't have the same wishes.  Max will be a teenager in years, but he will still be uniquely Max, who sets his world to the beat of his own drum.  We're just along for the ride.

This past month -- BIRTHDAY MONTH!! -- has been a fun one for Max.  He so enjoys October, and lets us all join in on his fun. He's changed costume ideas a few times, and I think he'll stick with his choice this time.  But, if he's anything like the rest of us in this house, he might change costumes a few times on his birthday.  He loves scaring his nurses and teacher.  He likes setting out something spooky each night to get his nurses.  But he also is sweet to them, and wanted to get them cupcakes with brain and eyeball frosting.

He's been using a new medicine this month for his involuntary movements, and we've seen increased focus and he seems to be less agitated when he's trying to focus on something.  Because he's not moving so much involuntarily, he's been able to use his talker with a lot more accuracy.  He chats up a storm with his teacher and therapists, but mostly with me when they're not here.

The other day as he and his speech therapist were talking about zombies, and the zombie crawl Max loves but missed this year, he had a great idea.  Robby was showing him pictures of all the disgusting fake blood he used to dress up like a zombie, and Max said "Mom, I want eat drink".  I told him no, only grown up Robbies can do that - it would taste too gross and he couldn't put it in his mouth.  Not to be deterred, he got right into offering a solution. "Mom, I eat cold chili" -- "NO!  That's so gross, Max!"  To which he cracked a grin and laughed.

He also has been very much into being "a man" lately.  He and Daddy are men, and they do men things.  When I forgot to put his lift sling under him in his wheelchair the other day, I was trying to explain to him I would need his help to hold still so I could safely get him out of his chair.  He said "Nope, need my dad."  I told him I can do it, I just needed him to hold still and it would just take me a little longer than it does daddy.  He said "Nope, need a man."  So, he sat in his chair contently until his dad got home a bit later.

Now for the pictures of October.  Yellow leaves, pumpkins, cooler days, crunchy leaves, and lots of walks.  All his favorite things!



 Colorado has plenty of yellow leaves to see in October!

 Max got to pick out his pumpkins this year. He chose bumpy ones. 

 Max's sunflowers were HUGE this year!  

 He still loves holding Curious George and wants him in his bed each night to go to sleep.

 He and Robby do such fun activities.  Robby helped him make his first paper airplane.  Notice Max's zombie in the background.
 Max and Daddy went searching for apples in our neighborhood orchard.  We found one in the tree not already claimed by the birds and squirrels. 

 On our daily walks to the mailbox to see if sister has written, they take detours through ALL the leaves to make them crunch under his wheelchair wheels. 

 Music is still his #1 love.  His long legs finally reach up to the keyboard to play along with Laura. 

 The open space behind our house is full of fall time treats.  Yellow leaves beside the ponds, and finally a FROG!!



 Momma spots them and Daddy tries to catch them for Max.  This one jumped out of his hand right after I took the picture...then I jumped a few feet back and screamed.  That may have been Max's favorite part about finding the frog.

 He has been working on "wh" questions in school, along with continents, and famous artists.  But, like always, his favorite part of school is making things.  Here are some of his Halloweeny crafts.

He's also been writing his sister while she's training.  Then we walk it over to the mail box and check to see if she's written back. They will get to talk on the phone soon, and I know they'll both be happy for that. 

 Robby tried out a virtual reality headset with Max.  Max HATED it!  Robby agreed to not try it again, but thanked Max for trying it out.

 Max made dog treats in school for George and Olive.  This was a bat shaped treat. George hardly let me get the picture before he was taking it out of Max's hand and licking it clean.

 He loves to give hugs lately.  Here he is giving Ms. Laura a great big hug for singing to him Happy Birthday.  He does love her. 

He wanted to draw his dad a scary zombie picture in school.  He drew this with me guiding his hand.  It's so much more steady now that he moves the marker around where he wants.  
On the left, he wrote "MAX" and on the right "DAD"

 He wanted to make a scary pumpkin too.  He drew his pumpkin, then cut out the creepy eyes and teeth and pasted on top of orange paper. It glows up against the window. 

Max and Robby made a zombie hand, complete with blood drops.  Spooky!


This is Max, at the end of his 12 years.  He's happy, and big, and strong.  He's challenging at times, and a joy to be around more often than not.  He knows what he likes, and knows what he doesn't like. He tries to sleep until noon if we let him. And wants to be in his room listening to music or playing movies at the end of school and therapy every day.   He tries to get away with one thing with me and another with his dad. If he doesn't get his way, he yells at us and throws a fit. He tells us jokes and likes testing his limits with a sly grin on his face.

I suppose we do have a teenager, after all.




Sunday, September 11, 2016

Max today...

We have been swept up in the back to school - winding down summer - ramping up of Santa's Little Hackers - finishing up doctors appointments - seeing daughter off to her next adventure end of August and start of September.   Hasn't everyone?

I wanted to take some time to mark on Max's blog who he is right now because it seems like he's changing and growing so much lately! He's a great mix of growing up and still loving the things he always has.  Except Sesame Street...he is completely over Sesame Street no matter how many times I tell him it's a fun show. 

On his second day of school, he talked his teacher into quitting early in order to play outside.  She had a cool bubble machine he got to play with.  I don't think bubbles are something he can see but he was able to feel them popping on him and he loved being outside.  He wants to end every school time with being outside!


His teacher printed off a book about Curious George getting a talker computer like Max has. He loved listening to her read it.  He has loved Curious George for years, and we've always said he and Curious George have the same language.


In school one day he had this to say about his beloved Nonni who passed away last year. I was headed to Oklahoma to see family and he wanted to go see Nonni.


He's teaching his teacher how to play Go Fish -- which is, he says he's done playing when he's winning.


Max isn't into just one thing these days, as he has been in years past.  His interests are a variety of all the things he's loved.  Here he is with a few of his favorite things.  His Batman blanket, his Curious George pal, his cuddly Where The Wild Things Are pillow.

He likes surfing and calls himself a surfer, and all the same music, and has found Kung-fu Panda to be his latest movie favorite. He likes listening to audio books, especially the stories on storynory.com. I had to ask if he still likes Batman because he hasn't asked to watch it in a while. He told me he does, but I think it's just not his obsession.  He still answers to Officer Max, and likes the idea of being an Ocean Officer like big sis will be training to be.

On Labor Day, we met up with some of his classmates because our neighborhood was holding a fundraiser at the pool for Santa's Little Hackers. One of his classmates was working on an assignment for Scholastic News about people making a difference in the community, and chose to interview us.  It was interesting to see Max's interaction with his peers.  In the past, he's always been very excited to see them, and they with him. But this was the first interaction we got to see the teenage coolness from him and them.  Gone are the days of being little kids...they're definitely moving on into the aloofness of being teenagers. And for us that was just so interesting to see since it was so age appropriate. 


 Max has been going on a lot more walks since the weather is cooler, and we're able to get him out more often. He had a rough few months with getting the right dose of testosterone and we're finally able to plan around his good and bad days.


While he still loves turtles, he's added on bears and frogs to his animal lists.  He wanted to see a bear so badly on our drive to and from California.  And he and Daddy go on a frog hunt every day.  We've seen a few, but it's hard to catch them without getting in the water!


Max still has multiple therapies every week.  He has speech, music, PT, and art therapy each week. Here he is with Ms. Laura playing his keyboard his favorite way...with his head. He lays and composes songs for hours and when he's done, he rolls off.  


Last week he had his annual metabolic appointment.  He wanted to take his computer with him to talk to his doctor.  

 He was greeted by the doctor who first diagnosed him almost 13 years ago, by being called "Dr. Watson."  He thought that was funny, and gave him a smile and got down to work spelling in his ABC section of his talker.

He said "u" "understand", when we were explaining his health in the past year.  This is a question to make sure the listener knows what he's talking about.

He then spelled "V-a-" and it auto-predicted "van", which is the start of his doctor's name.  I told him the second part of his name might be a little difficult, but I would start him with "h-o", and he could sound the rest out.  The second part of his name is Hove, so, he got it pretty close.  We were mighty impressed by it, and his doctor was intrigued by how he was doing it!


We discussed treatment, and research.  Since Max is still the one they're doing most of their clinical research on for his disease, CblX,  we were going over some options for treatment of a specific chemical that has been high in him. (Is that vague enough for you?  They are bit of hush hush about it, since it is research.)  When we talked about the new medicine, one of the side effects was serious stomach upset.  His doctor said he didn't want to try it in Max because of the side effect, but in talking it through with us they thought of another medicine that could work and decided to give it a go.  Max was quick to respond to that. 


He was sure to tell us he didn't want it, but we all did.  I told him it isn't the one that would upset his stomach, but another medicine that Dr. V said wouldn't upset his stomach.  He finally agreed to it, but had one set of parting words for everyone before we left.  "My like come don't!" -- good thing he only has this appointment once a year.


 Max has been very much a pal of his dad lately.  I think since Steve has been traveling so much in the past year, they're both making up for lost time.  Max got a new shirt from 3eLove.com,  (we all did!) and wanted to match with dad.  That little heart in the middle is they how and why we vote.


We took a little outing to one of his favorite places in Denver, to have lunch and watch the trains. Don't these guys look alike? They like watching officer shows and zombie shows together...just doing boy things.


The trains depart every 15 minutes for the airport now, so he gets to see them every time we take him to the station.  The conductor drove by very slowly and waved to Max as they left the station.


He's been helping me train for a half marathon walk I'm doing in memory of my mom soon.  Again, loving the cooler days and sunsets to walk by.  I have told myself that pushing uphill, in the heat, at altitude doubles the workout so is training me faster.


He has downtime a lot more lately, but that's got a lot to do with teenage hormones.  We'll take him to his room and he'll watch a movie, or listen to music or a story for about an hour then he's ready to come back out with us.  He allows cuddles every now and then,  even though he's a big man-cub now. 


Hopefully I've been able to capture a bit of who he is these days.  He's such a mystery in so many areas that I wanted to stop and recognize all the unique things he lets us know about him.