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!





Wednesday, August 16, 2017

8th Grade...

Happiest 8th Grader Around!
I'm sitting here with a mushy heart, in disbelief that my little boy started 8th grade today.  He didn't want to wear a Batman shirt today, he wanted The Beatles.  He told his teacher the work he wanted to do this year is playing a game.  He visited with his teacher and heard some of the things he would be learning about as an eighth grader.

After school, I asked him what he thought about school starting back up.  He answered, "My mom I think it's awesome."  I agree, buddy.  I hope it's a great year.

Just look at him growing up before our eyes!!



1st - 8th Grade first days of school.

He wanted to make his own sign.
And he loved his sign.
Happy first day of school!