Saturday, April 28, 2012

Baby Avery's Bucket List

My normal morning routine involves getting up and stumbling downstairs, settling down in front of the computer to catch up on Facebook and the news while hooked up to the "machine" (I really need to come up with a good name for it.  I'm leaning toward "Bessie").  Today, as I'm scrolling through Facebook, I came across a link to a blog about a little girl just a month or so older than Liam.  Like this one, it chronicles Avery's adventures from day to day.  However, Avery's adventures are her bucket list, as she is unlikely to survive to her second birthday due to a genetic disease, spinal muscular atrophy (SMA) - the number one genetic killer of kids under the age of two.

Photo copied from Avery's Blog -

So I started reading through the blog, and immediately the tears started to flow.  How can I not sit here and make comparisons to my little one as I read through this? I wonder if faced with this same type of devastating news if I could be as positive, as compassionate and as proactive in trying to educate people as Avery's parents and family are.

I read the second half of the blog through teary eyes while holding a sleeping baby on my chest.  How can I even remotely complain about a baby fussy from getting his shots yesterday when in reality, I should be thankful that all is well.  He has a cold?  Doesn't sleep through the night?  Might be teething?  Talk about putting everything in perspective. We are so blessed, so lucky, and everything else takes a back seat to remembering that.  Instead I'll think about how lucky we are to see every smile, to celebrate every milestone and to be able to make plans for the months and years to come.

Now, I'd never heard of SMA, and apparently I'm in the majority there.  We did genetic testing during our pregnancy because I'm a planner and hate the unknown (although I do know nothing is 100% accurate).  Apparently SMA is not part of typical genetic screening despite the fact a simple test exists and in many cases it is even covered by insurance. (I have no idea if it was in mine or not).  1 in every 40 people carry the gene, and if both parents are carriers, there is a one in four chance that the child will develop SMA.  Avery's family's goal is to help educate people about SMA and to help encourage and fund research on this disease. In light of the stresses, pressure, and heartbreak they must be feeling, I find this amazingly admirable.

If you get a chance, read Avery's blog, but be sure to have some tissues handy. 

Friday, April 27, 2012

Four Months Old!

It's hard to believe, but this little monkey is four months old today!  It just doesn't seem like it's been that long already since our family grew by one. 

He had his four month appointment today and is growing like a champ.  He apparently has his dad's metabolism, because despite eating everything we offer, his weight is only in the 21st percentile at 14 pounds 1 ounce!  He measured 25 1/2 inches (66th percentile) and his head is topping the charts at 17 1/4 inches (96th percentile).  He's long and lean (and adorable, that goes without saying!).

His upper respiratory infection is back and bothering us all, but all in all he's a pretty happy and healthy kid.  He entertains us endlessly, as he is getting more and more interactive.  He responds to us, he smiles, he laughs, he LOVES to look in the mirror at that "other" baby, and he's now just the past week or two discovered the joy of toys.  Liam is "thisclose" to rolling over from back to belly, preferring now to sleep on his side every chance he gets.  He's had the belly to back rollover mastered for weeks and weeks now, which can cut tummy time short quite often!

Liam and I are flying to MI in mid-May, so that should be quite the adventure!  He and I fly out of Moline and have a nice (relatively) short, direct flight to Detroit where Grandma and Grandpa will pick us up for a long weekend in Deckerville.  It will be so fun to introduce Liam to everyone back home!

As you can see, he is quickly outgrowing Mr. Monkey in our 4 month photos.  It's also getting harder and harder to get him to hold still for these and not roll all over the floor!

Friday, April 13, 2012

Mid-March to Mid-April Photo Update

Liam loves Shelbee :)

Sleeping angel

Big enough to sit in the Bumbo!

One cool dude
Spending some time with Ariane

Sharing Grandma's lap with Zwiggy
April 13 - no longer looking like a newborn!

Catching Up

Time has been just flying by here, and we're coming up on almost 4 months for Mr. Liam!  He is getting to be so big, definitely moving on from the newborn phase.  He and his dad have both been sick for the past 10 days or so, meaning I'm just a *bit* tired, ha!  I have three nights of (hopefully) uninterrupted sleep coming my way though next week when I head to a conference in Texas.  While I'm going to miss little man like crazy, I can't help but anticipate that sleep!

As we come up to his 4 month birthday here, I realized I never posted the photos with Monkey at 2 and 3 months!  Liam did really well with his shots, and flared up a few days after in terms of fussiness and general crankiness.  He was growing well and was pronounced healthy, measuring in the 23rd percentile for weight, 48th for height and the 89th (!) for head circumference.  He's obviously a genius with a head full of brains :)

He's continued growing about an ounce a day up until he got sick (we've become regular at the doctors and have had lots of weigh-ins).  At our last visit, right before Easter, he was up to 13 lbs 10 ounces.  He is quite the charmer though, as the nurses just love him (and really, who doesn't?!).  We've managed (knock on wood) to avoid a trip to the doctor this week for the first time in a month, yea!  The upper respiratory infection seems to be getting better, slowly, and whether it is the medicine or the change in my diet or a combination of both, we're at least managing the acid reflux.  I'm hoping that once he's healthy, we will be able to tell if we really do have a better handle on that or not. 

Even when he's not feeling good, he's a happy kid though, so we're lucky.  For example, as I am holding him over the bathroom sick because he is coughing so hard he's gagging and I'm pretty sure there's about to me a mess, he catches a glimpse of himself in the bathroom mirror and just starts laughing and giggling.  It distracted him enough he forgot to cough!  Then he'd cough and gag again, only to see the mirror.  We repeated this process for a good ten minutes, as he just completely entertained himself despite the fact he had to be feeling pretty darn miserable.

So with that, here is Mr. Charmer at 2 months...

 And then here is he at 3 months...