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 - http://averycan.blogspot.com/

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. 

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!

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...

Liam's First 3 months...in pictures

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Finding the New Normal

As you can tell from the lack of posting this past month, things got busy!  I started back to work on February 15, and my part-time ended up more like full-time.  The good part of that though was it meant I was busy, and once I got to work and got busy, I stressed less about leaving Liam.  The best part of me going back to work though was that Liam got to spend 2.5 weeks with Grandma and Grandpa!  My parents came in from MI and stayed with us from Valentine's Day through the first of March so that Liam wouldn't have to start day care until he was at least two months old.  I think that my parents had as much fun as Liam did :)

The first full week of March brought day care, and we are fortunate that we have a center that we really like.  Liam also gets to spend all day with his cousin Hattie, as they are in the same room, at least for the time being.  Liam seems to have adjusted to day care pretty well.  He still wasn't sleeping through the night, getting up at least once, if not twice, to eat, but he was happy and healthy overall.  It's been an adustment though, going from getting to spend all day with my little one to just a few hours at night and a bit in the morning getting ready.  I miss all that time with him and love the weekends.  Overall we are all adjusting pretty well to what our new normal is of work and play.

Then we got to last Wednesday night.  We got to experience our first visit to the ER in the wee hours of the morning.  It started out fairly normal.  A bit of cluster feeding, but after a bottle at 11:30, Liam was just not a happy camper.  He just couldn't quite find it and you could tell he was uncomfortable with his fussing.  He and I hung out downstairs for a few hours, ate again about 1:30, and then the troubles came.  He started SCREAMING.  A loud, ongoing scream that said I hurt!  I had no clue what could be wrong and tried everything from tummy massage to gas drops to gripe water, all to no avail. Finally about 3 am I got Jay up to help so I could call the 24 hour nurse line.  They told us to bring him in.  Of course on the 20 minute drive to the hospital, he calmed down, but still wasn't comfortable.  The diagnosis was acid reflux, just a harder to diagnose case because he didn't have some of the typical symptoms like spitting up.  So we started Zantac and found out one of the benefits was that from Thursday night on, he has slept through the night.  Liam sleeping for about 7-9 hours has become our new norm (although he does wake up a time or two and sort of talk himself back to sleep). A. MA. ZING.  The first few days went well, but he had another big episode yesterday morning after his bottle.  I'm somewhat convinced there is a trigger food that I'm eating that sets him off.  We're in the process now of trying to figure out what it is all while treating the acid while we can.  We did learn on our visit to the doctor yesterday though that he is up to THIRTEEN pounds!  The kid eats like a champ, let me tell you!  He's starting to show his weight a bit too, a few rolls on the thighs and a much fuller face.  It's still pretty darn adorable though.

So that's been the fun around our house.  We are hoping the Zantac will help ease his pain and discomfort, because it really does just break your heart when he screams and cries from the pain and there's nothing that makes it feel better.  Aside from those few episodes though, Liam is so much fun.  He is getting much more interactive, he smiles and laughs and you can't help but do the same.  He's getting so big though, before we know it he is going to be mobile (and at that point, Harley better watch out!).  I leave you this post with Liam sporting green...a color he's been wearing a lot lately as he cheers for MSU!

Photo Update - Mid February to Mid March

I'm a pirate...arrrr

Angel Baby

My littlest Valentine

Testing out his new quilt...nap time approved



Getting some love from mom

  

Cheering for MSU...First the Big Ten Title, now the NCAA tournament!

Motorcycle baby

 

Happy Boy