2015 in Review

31 Thursday Dec 2015

Another year is in the books! Looking back at old photos, I’m amazed by how the boys have grown. We’ve experienced a lot of changes. This time last year they were recovering from G-tube surgery. They went on to the Ketogenic diet in February, including a few days in patient to get adjusted. L had a very bad round with pneumonia starting on April 20th, that lasted a month and a half. It got scary. (PICU for weeks, strong vent settings, chest tube draining a liter of fluid, palliative care stopping by to get to know us kind of scary.) You may recall that N joined him for a few days, (twins are funny like that). And we came home to some overwhelming, but overall very positive changes.

It wasn’t all a medical free for all. We made a lot of very great memories too.

We participated in our first Denim Dash Virtual 5K to raise money for rare disease awareness and research.
We went on a family vacation, and learned to lug all of our new medical goodies along for the ride, and still leave plenty of room for fun.
We received new high low seating, and standers from the birth to three program.
The boys celebrated a 2nd birthday – a huge milestone for anyone who has been told their child might not live to two.
You all helped us have a successful 2015 Hero Challenge.
We now have in home day time nursing.

Throughout the past year, the boys have grown by leaps and bounds, and in the meantime, helped me to grow as a person and mom too.

I have been challenged, but also blessed. My plate remains full, but my cup runs over. And while my normal may not be yours, I find myself so grateful that this life, these boys, are mine. Thank you for being part of our normal too. Here’s to another year!

2015 NYE

2014 NYE

2013 NYE

Message received

16 Wednesday Dec 2015

Posted by Mama Laughs in Uncategorized

≈ 5 Comments

It’s been a busy kind of week. This time of year always seems to be, as we add in the required, the traditional, and the optional in an attempt to fit in maximum memories and fun.

Today turned out to be about a 12 hour work day, not too far removed from a couple restless nights while I watched over an ill L. I’m the kind of tired we all are right now. Lots left to plan, to do, to remember, or to forget.

So when I missed a phone call this afternoon at 2:05, it took me a while to get to the message.

And when I did, it began as an introduction of someone who would be looking in to another denied air transit medical charge. This one in particular, a pricey one, for the travel of L back in April. The last item like that (which was eventually covered in full) required hours of effort on my part, and numerous interactions with insurance and the flight company. We rehashed numerous details, confirmed coordinates, requested records, held off collections, then repeated it all again 30 days later, then again, then again.

Then this voice mail was news that we get to start over with a new charge.

But this one was a pleasant surprise.

“A” called to say they would be working tirelessly on the denied charge. He said more. All professional, and also kind. He had found the blog. The family. Found us.

“A” if you’re reading this – your 66 second message acknowledging that we are a family who matters, not just a case on a page – meant so much to me. Thank you for caring, thank you for calling, and know that we’re working tirelessly over here in our own way. 🙂

Hero Challenge 2 – 2015 update

04 Friday Dec 2015

Posted by Mama Laughs in Uncategorized

≈ 3 Comments

Tags

#herochallenge2, lissencephaly, twoifbyfaith

I’m finally ready to share some details on how the 2015 Hero Challenge 2 went! Your patience has paid off. 🙂

First, we issued this challenge: Hero Challenge 2 in honor of the twins’ 2nd birthday.

And boy did you respond! There were large acts, small acts, public acts, and secret ones. You found so many special ways to shine your light, and make the world a brighter place. They were ALL recognized at the birthday party, with a slide show that played for all the guests to see. It helps make that emotional day even more special. I won’t list everything here, but here are a select few:

Crochet for Lissencephaly continues to be an amazing project in the very capable hands of Crystal M. She worked hard all year on beautiful hand made crochet items, and donated to a worthy cause. This year she gave 235 Hats 65 Scarves, 8 ear warmers, 11 Blankets, and 1 pair of gloves to God’s Food Pantry. She also made items throughout the year for cancer patients, and hospitalized children. The only thing bigger than her talent, is her heart. If you would like to help, she is making soft yarn hat and blanket sets for babies through the AIM pregnancy center. And she’s off to a great start already! You can send completed items, or mail gift cards for materials to Crystal Moran at PO Box 1902; Russell Springs KY 42642. Click on the link to check out her work! You’ll be inspired!
Speaking of being inspired, my work group took Crystal’s lead, and tried our hand at crochet as well. We were able to donate around 80 small hats for NICUs at the 3 children’s hospitals where my boys have spent time. I hope to work on some new items soon! You are encouraged to find a way to participate in Crystal’s project too!
Speaking of my work group, they 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! I am lucky to be surrounded and supported by fantastic people.
Speaking of donations, Kayla M donated her salon services for the day, with all donations going to the Hero Challenge Fund. What an amazing act!
Speaking of amazing, Kentucky made me proud in many ways. Jill W coordinated a 5K walk/run over Labor Day weekend. Family, friends, church members, and many others came together for the event. They helped us raise even more funds, with the swing for the park being the main goal. Thank you to other friends and family who donated at various times even if they were unable to participate in the above 3 events.

Speaking of goals…I didn’t have a particular $ goal in mind. But I wanted anyone who chose to donate to know what it would be used for, so they understood what they were giving to. I mentioned 3 possible places we would donate…and due to the overwhelming generosity of you all – we raised $4,500! That was enough for us to give to all 3 causes!

We will spend approximately $2,000 on the swing and placement. (More to come when that is completed).
We are sending the second donation to help a family out with a piece of equipment that insurance has denied. The child has aged out of some of the programs that helped us with equpiment for the boys. I am so excited to be able to help!
We are sending the remaining balance to the Parker Lee Project. This family helps their daughter’s legacy live on by shipping medical supplies to families in need at no cost to them. It is an amazing concept helping so many when insurance can not.

(Every dollar was donated on, including some rounding up by us, I just chose not to share the exact amounts above, and will let the two recipients decide to share only if they so choose).

There were countless other acts of kindness, and I am always so grateful when you share them with me, via text, email, photo, facebook post, etc. None are overlooked, and each one is so appreciated.

THANK YOU to everyone who participated in any way. Continue to Let Your Light Shine!