Coming soon: A 2nd birthday!

On September 17th, 2015, Landon and Nolan will turn 2. TWO!

When you’re battling a life threatening illness, any birthday is worth celebrating.

When you’ve been diagnosed with Lissencephaly, turning two is extra special.

I can still remember like it was yesterday:

We were in the darkened, quiet room where our ultrasound tech was working hard to help us learn everything we could about our little guys. We had already been through quite the roller coaster of emotions the last few weeks. “There’s a little extra fluid, but hopefully it’s nothing” “It’s Dandy Walker, ACC, and absent CSP, there’s nothing I can do.” “You can still terminate” “We see a little connectivity, I see no reason to suspect this is life threatening”.  

After all that, we were at our second visit with our specialist of choice and were moving forward no matter what.

We were still excited about the recent developments that there actually were some signs of hope in the cavum septum, corpus callosum, and vermis where we were previously told the brains were in really bad shape.

Things weren’t normal, but there was hope.

And then our Doctor figured out it was Lissencephaly.

I’m paraphrasing, but in the gentlest way possible, she delivered these impossible words:

“I know we talked last visit about some signs we were excited about. But we also said we were hoping to see some more wrinkling on the brain. And that doesn’t appear to be happening. I’m afraid we’re looking at Lissencephaly. And with Lissencephaly, there is a high likelihood of severe developmental delays.   And I start to worry more about whether or not we’ll celebrate that 2nd birthday.”

Amidst the tears, the fervent googling began, and I kept seeing two over and over. Life expectancy, two years.

Since that time, I’ve seen posts and updates about families who lost their angels well before that 2nd birthday.   But I am thrilled to say that I’ve also gotten to know many families and little fighters who have lived and continue to live well beyond those expectations.   I assure you both of those groups would tell you that life is precious, and that tomorrow is never a guarantee.

Within our own family, just since their 1st birthday, we’ve had nine hospitalizations, and two occasions where Landon’s pneumonia became so advanced, that end of life discussions were had, and we feared that he might not make it back off of the ventilator.

So celebrating two is a big deal.

And “tomorrow” is never a guarantee.

And you’ll be hearing a lot about this milestone. ;-)

Like last year, we plan to encourage a “hero challenge”. Rather than send cards, gifts, or mementos to the boys, we are asking that you do something nice in their name.   Help them by helping others in ways they aren’t able. More details will follow, and we’ll have a couple of specific projects you can join in on if you so choose. I just wanted to put out this reminder that we have something to celebrate very soon, and we would love your help in making it an extra special occasion.

The theme this year will be “Let your light shine”.   And shine we shall.

#herochallenge2

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What a difference a day makes

Today was one of the best days Landon has had in a while.  He was smiling, cooing, kicking, and having a blast.  Not to mention…we were at appointments all day, which typically wipes him out.  So all things considered, today would have been a fantastic day no matter what.

But it is even more special when you contrast it against how he was doing just yesterday.  Landon spent the last several days in a fog.  Glazed eyes, lethargic, sleeping more than normal, and unresponsive.  His stats were fine, no fever, and no sign of an acute illness.  This isn’t unheard of, and I’ve seen other Liss parents talk of the same.  For the most part you just wait it out, and celebrate when they “return”.  One unfortunate side effect…Landon seems to swallow less during these phases too.  Which means he ends up getting choked on his saliva.  After two aspirations pneumonias, he’s at higher risk for aspiration events already.  But when he seems to be fighting a losing battle, it’s hard to watch.  You feel helpless, like you’re just waiting for something bad to happen.

He works so hard to fight through this.  We do what we can to help him. That includes increasing his respiratory treatments, watching his vitals, positioning him well, but also moving him around a lot.  I was even on the phone with pulmonology a few times.  Then we hope and pray for the best.

I of course want to show you how great he looked today.  But I’ve decided to also show you what a bad moment looks like too.  If you don’t want to see it, just skip to the second video.  This is an example of Landon struggling yesterday.  This was videoed intentionally so we could show pulmonology and neurology today.  We typically help suction him when this happens as well.  This can happen no matter whether he’s sitting or laying down.  And it happened often from about Thursday to Monday this time.

Bad moment…

But then, when I returned home yesterday, Darra said “I think he’s coming back”.  Sure enough, he perked up the rest of the evening.  And here is today, being the bright eyed boy we crave each and every day.

Not to be left out, here’s Nolan looking adorably exhausted after a long day.

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I suppose one of my goals here is to thank you for the ongoing prayers, and for the special thoughts and prayers when requested.  But I also wanted to show you a little bit more of what you’re praying for.  And why a simple smile or a good day, is never to be taken for granted around here.