We were thrilled and blessed to celebrate a very special 2nd birthday!

We decided to Glow All Out with the kids table!  I wasn’t sure how it would photograph, but it was a lot of fun in person, and turned out pretty cute in pictures too!

Our two year old guests of honor were sporting some pretty funky light up gear.  N was particularly full of smiles in the dark room, while L perked up later on in the party.  Both birthday boys were great sports!

We started by singing This Little Light of Mine with some glow wands.  This was of course the quietest the kids were all day – so the video is mostly just my voice.  You’ll not see that here.  Nonetheless, it looked neat!

Once the kiddos had full tummies, (or were too busy to sit still) we played a game. Glow in the dark ring toss!

Then, as cake and cupcakes were being plated, we had our second annual parade.  Big brother leads the charge, and loving cousins help push Landon and Nolan around the loop.

Of course we had to overdose on sugar, so we had ice cream cake, sunshine cupcakes, and neon cupcakes to choose from.

Everyone joined in the singing, and big brother took over candle duty.

We even let the boys sneak a taste of cool whip for their treat.  Nolan decided on a cat nap, but Landon took advantage of the rare treat!

Next we opened presents.

They were blessed with some new clothes, toys, and money for supplies.  But I think this card says it all.

As I opened cards and gifts from family and friends, both present, and hours away, it was moving to think about all of the support and love these boys have.  They are adored by their brother, cousins, grandparents, aunts, uncles, and the list goes on and on.  That list includes strangers, who have never met them, but pray for them daily.  While opening presents, we played a slide show of many of the hero challenge contributions, including a tally of $4,300 raised to help with our designated charitable items.  I wanted to say thank you in a way that was even a fraction of what is deserved, but instead I squeaked out a quiet “we appreciate you”, then fought off tears in the empty dining room while a brother in law provided a quiet hug.

It has been one heck of a year.  Since their last birthday, there have been 9 hospitalizations, several other ER visits, and infinite changes.  We don’t know what the next year will bring, but I hope and pray it brings a 3rd birthday party.  Every day is a blessing, and every birthday is a milestone.  Honestly though – that’s true for everyone, not just my family.  So I hope that whoever you are, no matter your story – you recognize that life is precious.  And you let your light shine, always, making the world a brighter place for all.

It’s been an interesting week.  As you already know, we’ve been working hard on the boys this week, to ensure they are at their best – or for that matter HOME for their upcoming 2nd birthday party!!

The respiratory routine right now looks like this:

• Nebulizer (Albuterol)
• Vibrating Vest
• Cough Assist
• Suction

In addition, L gets Pulmicort and both boys are getting Flonase.  I’ve spent the last 3 nights sleeping on the couch with L propped up nearby so I can listen for him better, and move and reposition him multiple times throughout the night.  We’re doing the respiratory routine above 3 to 4 times per day instead of 2.  Just 3 days ago, L was having a very bad day, dangerous choking spells, and even some coughed up blood!  So with that progress, and that hard work in mind, you can imagine how good it is to see these eyes:

The boys are back!  We’re still being careful, still doing everything we can to help them, but they are feeling much better.  N is back to sassy, and a bit loud.  L is cooing, and was so active earlier that I had a hard time cutting his hair.  A loud N and a wiggly L are among the world’s most precious “problems”.  And I am one very happy mama.

So that was a weird way to get ready for a party, but we’re a weird crew.  Among the more appropriate party prep to dos…The boys’ presents are in, family is making arrangements for travel, and we’ve had some pretty exciting hero challenges roll in.   Everything else will happen (or not) as time allows.  And I can’t wait to celebrate these little heroes and the light they bring to my life.

It was the okayest of times.

We’ve had quite the high low day.  My work group put together a 5K poker walk in honor of the hero challenge.  It was a warm, but absolutely gorgeous day!  We had a good turnout, and lots of donations!  We’re still waiting on the final tally, but we are going to be able to do some exciting things thanks to the generosity of others.

Afterward, I was at my desk, still tearing up with gratitude as I looked at photos and started to type up a thank you note…when I had my 2nd chat with D today.  L has had a bad day.  Earlier today he choked (quietly) so hard that he quit breathing.  Quit trying to breathe even, and D had to suction him to clear his air way.  This phone call involved another choking spell, and coughing up a brown and bloody mixture.  My tears of joy turned to tears of stress, as I feared we were headed back to a hospitalization when we are so close to celebrating their second birthday.

The trip to the ER was fairly routine.  They recognize us now, and before I could even relay today’s story, they referred to L as one of the twins.  I acknowledged that someone on the staff would know the boys and their history if that makes it easier than starting from scratch with someone new.  And sure enough, once we were walked back to a room a familiar face walked in.  The verdict for now is that L had a couple of harsh coughing and choking spells – but he did not aspirate, and his lungs are still ok.  The blood was from mucosal trauma.  He opened his eyes while we were there.  His blood work was ok.  His x-ray was ok.  His O2 is ok.  He’s “ok”.  We are to continue our robust home routine, and keep a close eye on him.  That routine includes nebulizer, vibrating vest, cough assist, and suction four times per day.  We’re also giving him an antibiotic 3 times per day.  And outside of the routine – the suction is staying within arms reach (as is L) so I can stay ready in case of another event.  We already had a 2 year checkup scheduled for tomorrow afternoon, so that will also serve as a follow up.

He and I will sleep near each other one way or another tonight.  And while I’ll lay there a little anxious about the night, and the next day or two as L tells us how things are going to go, I’ll also lay there feeling very thankful.  For a support group that continues to go above and beyond.  For kind hearts and sunny days.  For people who let their light shine, so that no day is ever completely dark.