Happy Birthday and the Little Things

 Happy Birthday to my beautiful 8 year-old boy!

  

I never really know what to write or post on your birthday because, really, words cannot effectively state how much you mean to me and how truly lucky I am to be your mom.

In the past, I’ve displayed slide shows and pictures, some years written only a brief message, other years nothing at all. So I stayed up at night, wondering what I should write—if anything at all. A lot of this blog is devoted to your milestones, which made me think: there is so much more to you than the big things that happen in your life. In reality, it’s the little things you do that bring so much joy like…

The raspberries you make

And your love of rock and roll

The way you hold my hand against your chest

When you’re not ready to let go

The unconditional love you have for brother

Your love of

Swimming

Explosions

And the “P” on your spinner

How you always find the vacuum hose

Or choose Maisy over Eric Carle

Your smile that definitely lights a room

Or your happiness expressed in air piano

J loves it when you study your hands

We all smile when you follow our drink cups

I like the wrinkled brow you make when you’re unhappy

Or when you eat too fast and get hiccups

There is so much more about you

The little things we appreciate

We’re so blessed to celebrate with you

On this day that you turn eight

Some Big Things

It’s been nearly two months since my last post, which can only be explained by how very busy I’ve been with work and life in general. Zane’s blog has slipped down the rungs of my to-do list.

So a lot has happened in the last two months, and it’s really all pretty positive.

Zane’s pain and trip to the ER in October were due to his spinal surgery. Nothing related to the hardware, but rather to the muscles undergoing excessive strain. Zane doesn’t realize when he’s overdoing it—and sometimes I push him a little too hard in his exercises, too. But Zane’s pain—when he has it now—is controlled with ibuprofen.

Zane now has a home health nurse for sixteen hours a week. She is so sweet and wonderful with Zane. Having her here has given me extra time to get things done and has allowed me to spend time with the rest of the family. Zane also has a home physical therapist. It took a threatening call to Zane’s case manager during his hospital stay, but he now has in-home PT once a week, and his therapist is excellent! Her goal for Zane is to eventually walk, which ties in well with my personal goals for him, as well as one of his IEP goals.

Zane has been back to school since the tail end of October. His second grade class is amazing with him. There is one girl in particular who is super sweet to Zane. In fact, all the second graders made cards for Zane while he was in the hospital. They truly are a special group of kids. I am so happy with his new school. It is the perfect place for him.

Since preschool, Zane has been eating food for taste on and off. In the past, he has always regressed due to digestive issues (mainly, throwing up the food he ingests). But in the past couple of months, Zane has done so well with eating by mouth (and with feeding himself) that we made a special appointment to see the dietician. Zane's formula prescription was for six cans a day via g-tube. But the dietician has reduced his tube feedings by one can with the possibility of reducing his tube feedings further as he progresses with oral eating. It looks as though that will happen sooner than later. He is now eating a twice a day and enjoying a variety of pureed foods. He is so independent now that he doesn’t want anyone to feed him. Zane wants to do it himself—and he does it really well. The only thing he needs practice with is loading his own spoon.

Tomorrow (on his birthday), Zane is getting his new wheelchair—a Zippy Tilt-In-Space. His old one has been slowly falling apart for a long time, so it will be so nice to have a shiny new one that fits him better.

Zane’s seizures have been under control since the beginning of November, and he is back to his happy-go-lucky self.

Thanks to those of you who have checked on Zane during our absence from the blog-o-sphere. You’re the main reason I write these blog posts, and your love and concern for Zane means everything to us.