Coming soon: A third birthday party!

In case you missed it, I launched a t-shirt fund raiser via bonfire on facebook. You can find the link here!

It’s only open for one more week! 

https://www.bonfirefunds.com/3rd-birthday-live-in-harmony

Landon and Nolan’s 3rd birthday party will be themed around music:  Live in Harmony!  We’re excited to celebrate with and for them in the weeks to come.  For now, I wanted to introduce the t-shirt link, explain why it ends weeks ahead of their birthday, and introduce the charities we’ll be supporting.

From September 1st through September 17th, you are encouraged to live in harmony!  Join in the party, and help us celebrate THREE in style!

The t-shirt fund is “early” so we can wear the shirts early and often. I am hopeful that with this timing, shirts will be delivered by Labor Day, so friends and family, both near and far, can wear their shirts any time in September leading up to the boys’ birthday.  If you participate in a fundraiser, donate your time, deliver a meal, mow a yard, help a friend in need, or do any other kind act in honor of the boys’ birthday, feel free to snap a photo and send it to me!  You can comment on this blog, on the facebook page, or via email.  We love seeing how you are celebrating, and how you are being the heroes of the world. So don’t be shy – share your acts of kindness!  You never know who you will inspire!

 The hashtags this year are: #liveinharmony and #twoifbyfaith.

To be clear – your act of kindness does NOT have to be in the form of a donation. However – when we had multiple people ask to donate money in year one, we decided to create an outlet for that in year two.  I had no reason to suspect we would raise $4,500!  So for year three, you are once again encouraged to perform a kind act.  If you do choose to donate, either via the t-shirt fund raiser, a local event, or by donating through my parents or in laws, the money will make its way to me, and we will allocate it accordingly to the following charities.  I have not set up a go fund me page at this time, and do not plan to.  If someone “out there” has no connection to my family, and isn’t sure how else to donate funds to these causes, you can donate an additional amount via the t-shirt fund raiser through August 12th, or support a local cause near and dear to your heart and share your gesture with us via social media. 

Any funds raised for the birthday will go to:
Harmony Park in Robinson IL

Miracle League of Findlay OH

The Parker Lee Project in Texas


Breaking for the Better

On this day, 3 years ago, we started the journey of learning the boys’ diagnosis.  Reading this post from that time is hard for me.  It was the most confused, scared, vulnerable, and broken I had ever been.  To be honest, over those next few weeks I mourned the children I was expecting, and started preparing for the unknown.

That sounds harsh; to mourn your own children before they are even born.  But mourning who they were not made it possible to celebrate who they are.  I knew each good day was to be cherished.  And vowed to find joy even if the days were bad.

Looking back, I think breaking was important.  The me from then wasn’t ready, and couldn’t have handled this.  They say you don’t know your strength until it is tested.  I don’t think mine existed until it was needed.

I think of stained glass windows.  Broken glass, becoming something new.   Many of you are part of why I was able to put my pieces back together. Thank you for being there for us then, and thank you for being there for us now.

Three years later, we do in fact find joy in each day.  And there’s a beauty in the broken-ness that I could never have anticipated.

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An update and something to chew on

First: Many of you have asked about Landon since the last smiley update.  He’s doing great!  He was even off of oxygen for most of the day on Tuesday, needing it again when he got in to a deep sleep at night.

To recap Landon’s events:

Wednesday May 18th: Not managing saliva well, LOTS of drooling and even a little choking.

Thursday May 19th: Projectile vomiting (he never does that), choking and aspirating on it.

Friday May 20th: On close watch, call in Rx for steroid and antibiotic with help of local Primary Care Dr.   Nurse D also consults with Pulmonologist and they agree we can continue to manage at home, with nebulizer every 4 hours for at least 24 hours.  But if we have to use more than 2 L of oxygen, to go ahead to the ER.

Saturday May 21st Long night, day, and night, but I stay on top of the treatments, and Landon is alert and coughing.  By Sunday evening, I’m feeling sure we’ve “beat” this, and he’ll just need some time to keep clearing his lungs.

Skip to May 31st, and he went most of his waking hours without any oxygen  support!

That means we went from event to “baseline” within two weeks! WITHOUT going to the hospital!  Yay everyone involved!

We’re not sure what kicked it off, but we can’t rule out teething since the drool was so excessive, and he’s clearly trying to cut through some gums.

 

Speaking of teeth:

Landon and Nolan went to their first dentist appointment! They are two and a half, so ideally we would have gone before now, but to be honest, their teeth came in very late.  (This can be attributed to neurological issues, seizure meds, or the lack of chewing to soften gums).  Nonetheless, it was time to let a professional check out their chompers.

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They were great!  Landon in particular would like a personal gum masseuse 24/7 I believe.  He was all smiles.  Both boys cooperated well, and no one lost a finger!  :-)  They felt confident they could handle cleaning the boys’ teeth, so they’ll get on a twice per year schedule soon.  If for some reason anything more extensive is needed, we may have to explore sedation dentistry.  But until then – we’re feeling good about our local team!

They feel good about our dental hygiene routine at home.  As a reminder:

We brush their teeth with Tom’s of Maine Silly Strawberry (Lower sugar) toothpaste.  We also wet their mouths, scrub their tongues, and suction our their mouths throughout the process.  It’s actually one of my favorite therapy items to do with them!  Big Brother even likes to help.  (No surprise!)

In summary, 5 out of 5 dentists approve of our sweet boys, and the smiles they inspire.