Ezra turns 2!

These days our baby is looking more and more like a little boy.

Ezra recently inherited this green walking aid from a family in Salem.  It's called a Babywalk, and it helps kids with mobility issues gain independence by having walking support.

Ezra has only had it about 1 month, but he is already enjoying being able to explore on his own terms.

I never thought I would be so delighted to have a little troublemaker!

Ezra's birthday party was held in a beautiful old gymnasium just blocks from our house.

Ezra loved the open floor space and wheeled around in all directions.

The older kids played basketball, soccer, tag, and practiced some rock climbing moves.

Balloons.  A party is simply more fun with balloons.

Jonah and his buddies: Anders, Bella, and Dylan

"Make a silly face"!

We had pizza, kale salad, and fruit.

Oh, and cake too!

Jonah didn't actually make the cake...he was more like the CEO of cake-making

and oversaw the whole process---including picking the icing colors.

(black, really?....thank goodness for bumblebees)

Happy Birthday!

The next photo cracks me up.  This is Ezra's "food face."  If you sneak something in his mouth, he always makes this face, regardless of flavor.  Always.

He was much happier playing with the cake.

Thank you to all our friends and family (near and far) who made this celebration special for Ezra.

Opening presents started on Saturday and continued through the rest of the weekend.  

It worked really well to space them out.  Ezra loved everything!

The best present of all was seeing Ezra so happy...and tired.  

Ezra and Jonah share a bedroom, and usually have different bedtimes, but after the party we put them both to bed at the same time and IT WORKED.  

So we now have a new routine for our big two year old.

Of course, the next day, we were off to the skate park to burn up more energy!  

Ezra seemed to be embracing his new status.

And just like that, our baby is two.

We love you Ezra!

Feeding

This image is not usually what comes to mind when you think about food.

For the past 23 months, Ezra has been getting the bulk of his calories directly pumped into his tummy via a feeding tube.

This is what "food" looks like to Ezra.  His current regimen is a combination of two blended foods (Nutren Junior and Liquid Hope), 1/4 tsp of salt, and probiotics.  I make one day's worth of food in the morning using a formula blender.

Once Ezra transitioned from baby formula to the junior food, I was really horrified reading the ingredients list.  This is a Nestle product, and just like any of the mainstream pediatric food supplements, it somehow manages to provide kids with the necessary calories and vitamins without seeming one bit nutritious.  

So I began looking for an alternative and discovered Liquid Hope.  

Liquid Hope is medical grade food and our insurance will pay for it, so after switching supply companies (a total nightmare) we were able to try it to see how Ezra would tolerate "real" food.

This particular formulation is intended for adults and we are finding it to be too high in fiber for Ezra....which is why he's consuming a combination of both types.  Our supply company will hopefully start stocking a newly available pediatric blend made by the same company called Nourish, and when they do, we will be trying that.

Parents have the option to make their own blenderized food for a tube-fed child and I have looked into doing that.  It's something that I plan to revisit later.  Currently, having a shelf-stable food option is really convenient with all of the travel we do for Ezra's appointments.  And because Ezra's gastrointestinal system is not like ours, I'm really terrified about the consequences of experimentation.

One of my primary jobs has been making sure that we have all the tools on hand to keep daily operations running smoothly...there's always the knowledge that the things which keep Ezra fed are not readily available---which means our bedroom and basement are stocked piled with supplies.

One of the most difficult adjustments (for me) has been dealing with a home full of medical hardware and products.  Now, almost 2 years later, I don't bristle at the sight of an IV pole being a permanent fixture in our kitchen.  I'm getting better.  Although, during my last morning jog, I kept hearing (in my imagination) the beep of Ezra's feeding pump.  I look forward to a future of sharing meals with my family without tubes, cartons, and alarms.  You can join me in continued prayers for that.

xoxo

  

Little Ladies

Yesterday evening was overcast, humid, and windless....a perfect time to release our little ladies.  Jonah placed 1500 ladybugs throughout our garden.

  

They really tickle!

We also picked our first ripe strawberry of the season!  Is it summer?

xoxo