Sunday, July 22, 2012

Calf-Scours, Nesting Cups, and Scars

What is it about antibiotics that makes changing diaper a thoroughly nasty chore? Newborn diapers, especially those filled with breast milk poops, are about as bad as it gets UNTIL your 20-month-old takes antibiotics. Yuck! The other night I was so...I don't know...impressed (?) that I called my dad just to tell him about it. He laughed and called it a calf-scour. A what?! Apparently, as a kid on the farm, he and his family called the newborn calf poops calf-scours. Double-yuck!

Calf-scours aside, Max is feeling a little bit better. After seven days in a row his fever finally broke yesterday. We celebrated first by stacking blocks. Max's laughs and laughs whenever he knocks them down.

He made sure he got every last one of them.

Then we took a quick dip in the pool. Nesting cups...Max's favorite water toy.

You can see some evidence of Down syndrome in the following photos:

Here you see the faint scar running down the middle of Max's chest, evidence of his open-heart surgery to repair his complete AV canal defect. (Keep checking in for a detailed account of the most impactful event in Max's life--and in ours--to date.) It is a symbol of how strong, resilient and able he is.

Here you see the wide, flat nape that identifies people with Down syndrome from behind. I find it a perfect placed for planting kisses.

And here you see a beautiful, magnificent, perfect little boy.

And we continued our celebration today. A long nap, a quick swim, a relaxing stroll, and then Max waved goodbye. First time ever!

Wednesday, July 18, 2012

My Boy Is Sick

My boy, Max, is sick.

This disgruntled face captured today on my cell phone.
As far as we can tell, it's not serious. The doc isn't taking any chances though, so in addition to an antibiotic, Max gave up three vials of blood. That's not an easy task for a child with Down syndrome. One of the internal physical characteristics of Down syndrome is narrow passages: ear canals, larynx, nasal passages, intestines, veins.

Tiny veins beneath layers of baby fat equals lots of tears, but not today. The phlebotomist (who thought of that word?) was amazing! She was so gentle that Max let out with no more than a quiet whimper. Huge props to you, lady phlebotomist. You made our evening a very pleasant one.

Now we just wait. Doc says we should know something by Friday. I'll keep you posted.

Good night, everyone. I'm sleepy.

Thursday, July 12, 2012

Separation Anxiety...Still

To see your child in pain is, well, painful. Knowing that YOU are the cause of that pain is devastating. Even if the pain is caused by a perceived danger that doesn't actually exist, the hurt is still the same, and it's contagious.

 Max was in pain this morning. Not physical pain, but pure emotional anguish...and I caught it.

It happened at daycare drop-off. Despite the potential distraction of Bubble Man, with his music and dance and bubbles (all things Max loves), the moment I passed Max to Miss Erica I saw it. The arms outstretched. The turned down corners of the mouth. The eyes darting frantically. I briefly leaned in for a comforting kiss, but it was the kiss of death (so to speak).

In that moment Max knew. He knew he was being left behind with a woman he adored, but wasn't Mommy. He knew I was abandoning him. His face turned brilliant red. His eyes poured tears. His mouth opened wide in an agonized scream.

I could feel it coming. It appeared first in my stomach and moved almost instantly to my chest. The pain was intense. Involuntarily, the tears came in sheets, and I fled. If I didn't leave at that moment the pain would continue for both of us. But I knew that within just a few minutes Max would pull it back together and his happy self would once again emerge.

Sure enough, an hour later Miss Erica called to tell me that two minutes after I left Max was laughing, dancing and popping bubbles.

That's my boy!

Monday, July 9, 2012

To the Max!

Help us! Donate or even join the team!

It's official. To the Max!, the Buddy Walk team supporting my beautiful boy, Max, was created less than an hour ago. What is a Buddy Walk you ask? It's only the most fun and fulfilling fundraiser in support of Down syndrome around. This one takes place on October 7th in Wakefield, MA. It supports the Massachusetts Down Syndrome Congress.

Check out my personal donation page, and the To the Max! team page here. Our goal is an ambitious one, but I know that we can pull it off. To the Max! needs 10 team members (well, 9 more) and we're going to raise a whopping $5,000. What?! That's right my friends. To the Max! will raise five large for our genetically enhanced friends. That means at this moment we still need to raise $4,900 before October 7, 2012.

Come on, you know you want to.

Check back here for weekly updates on our progress.

Let's do this!

New Routine

It's been too many days since my last post, and as seems to be the perpetual problem of late, I don't have enough time to say very much. (You'd think that having the summer off would give me too much time, but I've just got a busy, busy life! And a new routine is always disrupting)

So here's the deal:

A few nights ago, Max had a sleepover with Grammy and Papa, and the next morning my mom called to tell me...

Max can climb stairs!!!!

Holy crap!!

Max has been combat crawling very well for months now but has no interest in getting up on his hands and knees. He is so motivated to be on his feet that his physical therapist has very grudgingly given in, and she now practices standing and walking with him. Stairs have also been a small focus in his therapy recently. Apparently, some kids will crawl on all fours AFTER they have mastered the stairs. Who knew?

My mom's house has the perfect stairs for a beginning climber. They are carpeted, and the flight is short.

Max in mid flight (hee hee).
Max at the finish line! Grammy's waiting for him at the top.
Now this poses a problem for Sean and I. We live in a VERY old home. When it was built child-proofing didn't exist. Check out our main stairs:

Max's next challenge!
OMG! The flight is long and creaky, each step is shallower than standard modern stairs, and they are flanked by rails on one side (not so bad), exposed brick on the other (what?!) and hardwood at the bottom (actually, the floor is pine so is it's technically soft wood but Max's head won't know the difference). We have a second staircase with steps so shallow you have to turn your foot sideways to climb them. And the stairs to the basement are spiral and metal. We're doomed!