Wednesday, November 1, 2017

Max turns 14...

My baby is 14. 

Steve tells me all the time, "He's not a baby." To which I respond every time, "He's MY baby."

Another page has turned on the calendar and our big guy is 14 years old now.  The really does seem pretty old...but still my baby.

Max woke up happy and ready for a very fun birthday. He's been talking about going to the zoo for several weeks.  He wanted to see the lions, which to him are the BEST. Period.

He gave a list of people he wanted to go to the zoo with him, his cousin and aunt, and grandparents too.

Then he gave a list of all the animals he wanted to see.  Thankfully his cousin knows the zoo really well and was a great guide. Max loved every minute of it. 


The main (mane) thing he wanted to see was the lions.  They were feeling pretty lazy in the sunshine, but one walked up a bit closer for him to see.


 


 This is as close as he could get to seeing a lion up close.


The giraffe was eating so he got to him up close.  The zoo is definitely isn't the best place for the visually impaired, so it's really great when we can get him up close to the animals.


The baby giraffe was interested in Max and his cousin.


Dobby meets Hermione

Mom just wanted to eat!
 Max said "Play. I need."  I think we all would love to play with that baby giraffe!

  His next request was to ride on the carousel.  We found the lion!!




 They have a designated space for wheelchairs, right where the ramp is attached.  Max's Grammy and Grampy rode behind him.  Daddy right beside him, and the rest of us were right in front of him.


 This is what Max had to say about the carousel ride.
"People best of my life of spookier and it over"
 I think he would have spent all the time on the carousel.  He squealed and laughed and danced.  We need to remember how much he loves it!! But, there were more animals on his list.  He wanted to see monkeys, so we made our way to the primates.  This is the only one who caught his attention.


The baby gorilla was out and playing.  He liked seeing the gorillas, and orangutan - who was playing so much it was hard to get a good photo of.


And lastly, we were looking for a baboon - at his request, but found this mandrill instead, and may have told him it was a baboon. It was up close and easy to see. 



After the zoo, we went home to get ready for birthday and Halloween fun.  Max put on his lion tshirt and got out his Batman cape, since he wanted to be "Lion Batman" for Halloween.  He wanted to hand out candy, and scare the little kids...always his favorite.  He will laugh when they scream.  This year a lot of neighbors brought trick-or-treating to him since he can't take the steps up to their houses.  He is set with stickers, and trinkets for a year!

Max was all about ghosts this year as his creatures.  He didn't want to set out any of his zombies from this year, so Daddy hid them out of his sight for the older trick or treaters to see.



This was his favorite this year.  He wanted it on top of his van, but the wind was so strong we had to tie him down on the ground.

This was his second favorite ghost...look at the spoooooky moon behind her....woooooooooooooooooo! 

After we got the decorations on, I took Max for a quick walk around to see kids out and to see some decorations before it got dark.  Then we made a stop back inside to have dinner and for Max to try out his birthday gift from us. He and his dad have been rocking every night for months, and the little blue chair that rocked my baby was no longer able to hold them both.  We went to the La-Z-Boy store and sat in all the big man rockers they had and found this one for him. He got it last night and wanted to rock and rock and rock! My feet don't touch the floor when I sit in it!  But Max L-O-V-E-S it!!! 



When the trick or treaters started coming more frequently, we took Max out to the porch to get to scare the kids with all his spooky creatures.

Max hanging out with his witches.



Batman cape for his 4th year.  
He wanted his creepy baby hanging from his feeding pole. 


And creepy monkey on the side of him.  
His spider was down in the bushes to scare all the moms and dads.  The kids remember it's there every year!

We really didn't have too many trick or treaters. It was a cold, windy school night, and there was a lost little Batman and a hurt teen in our neighborhood, so I think everything just ended earlier than some years.  We were packed up and in the house by 8:00. 

Just in time for a birthday cupcake for the guy.  We sang him Happy Birthday To You and told him to blow out his candle.  He took a deep breath in and let it out...and of course it was just enough to blow out that candle.  (He may have had a little help.)


Happy 14th Birthday, Max.  We love the boy you are, and we hope this year is one of your best.

Friday, October 13, 2017

Fall Catch-up...

Goodness, it has been a while!

At the end of the first week of school in August, Max was in the hospital with low oxygen levels from an upper respiratory infection.  From then until a week ago, he was battling daily migraines. And yesterday we were back to the hospital for another viral respiratory infection. His migraines are starting to get under control, but now he's fighting off this cold.  Thankfully he's able to get well at home with some oxygen, since his home is basically a hospital with piles of laundry, stacks of mail on the table, and dirty dishes in the sink.

On the days he's been able to sit through school, or get out for walks, he's been enjoying them.  We're hoping he's feeling much better by next week so he can get back to school and therapy.  He misses doing both of them.

So consider this post a catchup of the last couple of months...the good, the bad, and the rest of it.

We have learned about the Posy Bed at the hospital...it was a game changer.

This is Max's preferred way of wearing oxygen, this was when the dr's decided he could go home. 


He's been loving the early evening walks. 

Sunsets are his favorite. 

A month of migraines meant a lot of dark, quiet therapy sessions.

And lots of needing to be held and rocked until he would go to sleep. 

On good days we got out to the Halloween store. 

And the pumpkin patch.

He chose some great ones. 

But he was not impressed with Daddy's silly monster choices.

He humored me for a fall leaf photo shoot. 

And told me he was "furious" he had to go to the hospital again. 

But today we're back home, with all the things to make him comfortable enough to get better! 

Thank you for following along, even when I forget to update!  Our fingers are crossed for a better rest of the cold and flu season. It feels too early to be doing this already. I'm sure the next update will be when I have a 14 year old in a couple of weeks.  Unbelievable. 

Friday, August 25, 2017

First week back...

It has been a full first week back to all therapies and school.  Max started the week with the full eclipse.

He can't really see things in fine detail, so there wasn't much he could see with the eclipse, but that didn't stop us from taking him outside to experience the eclipse with us.  It took a lot of explaining to him what was happening - mom and dad are the original audio subtitles to the world around him.  He liked it when it got shady and when the birds started singing.  It was also very quiet outside and cooler than usual.






Towards the end of the eclipse, his teacher arrived and he was ready for school!  She brought a cool book for him from vision services so he could feel the eclipse through tactile pictures.  They watched some videos about the eclipse and read another book too.

Tuesday was another busy day with physical therapy and school.  Max was having a little bit of a rough afternoon on Tuesday, and ended his school time with a headache and needing to have a rest in his room.  He was able to tell me and his teacher than he was hurting and needed bed without getting very upset.  But the best part of his school time is Max met one of his goals of using his switches for his communication device by himself for most of school.  This is huge as last year he refused to use his talker without someone holding his hand for support.

Wednesday was his busiest day of the week, and he was exhausted! He started with music and slept through most of it.  Then was school which he did great with.  He got through all his subjects and again worked hard at using his communication device by himself.  By the time his art therapist got here he told her he needed to do "easy", and she agreed!

He wanted to paint all by himself this week, and then wanted to name his art.

He only needed a little support for his arm this week.

Loving his artwork.

"I'm Max" with blue and yellow water colors

"Ice In Hot" purple and yellow paint pens
This week Max also had a new nurse start with him.  He told us "I think it's awesome." when we asked if he liked his new nurse, so we're excited for him to have a new pal help him at night.

Thursday was a little more relaxed, but we got out for a drive after the daddy got home to go get tacos as a reward for a great first week back to school.  We walked around outside after we ate our tacos and Max got to play around a fountain.  (Sorry, no pictures.)

Friday morning started with an early morning trip to the hospital for a lab draw.  We're checking his testosterone levels to see how we're doing with the new dose.  Changing the dose, and frequency has helped some things but has made some other side effects show up.  We wish he didn't need it at all, but he will have to have testosterone replacement for life so we just have to find the right dose for him.

We spent the rest of the day watching movies and kicking back.  Something Max has down to an art form.  Lately, he wants to be all cuddled up with one foot hanging out of his cover being blasted by his portable air conditioner.

Being an 8th grader takes a lot of energy!