Happy 14th Birthday, Lilly!

Happy Independence Day/4th of July and Happy Birthday, Lilly!  She would have turned 14 years old today if she were still alive.  I'm so curious what she would have looked like and acted like at 14.  I miss her.  💕😇

I still make a cake in memory of Lilly's birthday every year:

I recently planted fresh flowers in Lilly's memorial garden, so everything is bright and cheerful.  My Mom gave me the patriotic butterflies:

My Dad and Stepmom sent lilies.  They're still slowly opening:

💖🤍💙

It's Trisomy 18 Awareness Day

Today, March 18, is Trisomy 18 Awareness Day.  What is Trisomy 18? It means there are 3 of the 18th chromosomes in the body, instead of the usual 2.  That naturally causes real problems for the body.  Early help can give these babies a chance to live longer.  Lilly lived 17 months and I was grateful for every minute of her precious life. 💙👼

March is Trisomy Awareness month

SOFT (Support Organization For Trisomy) (soft.org) is a group that has been educating and helping families with children diagnosed with Trisomy 18, 13 and related chromosomal disorders for over 40 years.  I found them so helpful during Lilly's life and I still get cards from them every year, remembering her.  The month of March is "Trisomy Awareness Month."  See soft.org for plenty of resources.

For the entire month of March, I will be donating, to SOFT, 90% of any royalties I earn for my book LillyBear Goes to Chincoteague.  

My book is available on Amazon.com.  It is a print-on-demand book and can be ordered from whatever country you live in.  

Of course feel free to just make a contribution to SOFT directly! 😉

LillyBear Returns to Chincoteague

A few days after Christmas, my two youngest children, LillyBear, and I took a trip to Chincoteague island in Virginia.  We'd never been to Chincoteague during the winter so didn't know what it would be like, except that we wouldn't have to deal with the pesky mosquitoes!  My Dad and stepmom, and my siblings and their families, all came to Chincoteague too.  

If you've read my book, LillyBear Goes to Chincoteague, or my 2012 blog post, "LillyBear's Adventures in Chincoteague," you are familiar with the activities and things we like to do on Chincoteague and neighboring Assateague islands.  

We stayed in a cute little house called the Crepe Myrtle Cottage, which I believe was built in the 1930s.  One of my brother's and his family stayed with us.  My Dad and stepmom, other brother and his family, all stayed down the road at the Starbright Cottage.

LillyBear on the steps of the Crepe Myrtle Cottage

I left copies of my LillyBear Goes to Chincoteague book at both cottages.  I hope other vacationers might enjoy them.

LillyBear is sitting on a table in front of the window
with our book next to her

Because of the time of year we were there, not everything was open.  But it was still very nice because there were no crowds either.  Just being outside and walking in the fresh air was wonderful.

LillyBear climbing a large crepe myrtle tree

One day it was rainy so LillyBear decided to stay in the cottage.  (She prefers to be warm and dry!) Solomon and I explored a little part of the island that we had never seen before - the Chincoteague Waterman's Memorial.  We had to drive through the marina parking lot to get there, and then walk up a little hill.

It was so foggy we couldn't see very far around us.  The only sound was water  lapping on one side.  The quiet and fog made reading the plaques even more  sobering.  Yet there was such a beauty in the place.

Solomon and I followed a trail past the memorial for a while.  It was very interesting.  We're still not sure what this part, off the trail, was:

LillyBear was happily waiting for us, when we finally got back to the cottage:

For those of you that are Misty of Chincoteague fans, here is Miss Molly's Inn on Main Street where Marguerite Henry stayed at in 1947 while writing her book:

It doesn't seem that Blogger sends out emails to subscribers announcing my posts anymore, so I have no idea if anyone that used to read this blog will see this.  But if you are reading this, and for any new people who see this, I just want to say "hello" and that I hope you have a very blessed new year! 

MY NEW BOOK: LillyBear Goes to Chincoteague

LillyBear and I have an exiting announcement to make!  We now have a published book on Amazon.com:  LillyBear Goes to Chincoteague.  

Because the book is self-published through Amazon, it is a "print on demand" book.  That means it can be ordered and printed from any Amazon website in the world.  So if you live in another country and are interested in the book, you can get it without paying for overseas shipping.  😉

Here is a summary of the book:

When LillyBear travels with her family to Chincoteague and Assateague islands, she is amazed by everything she sees in the natural world around her and inside the many museums she visits. As much as she enjoys her days exploring, she starts to worry that she’ll never see the island’s wild ponies. Will LillyBear find all the historical links to the famous pony Misty? What will LillyBear learn about the lighthouse on Assateague island and why the mosquito was nicknamed  their official bird? Will LillyBear ever see those elusive wild ponies before her vacation is over?

A heartwarming and informative story about a little bear and her (human) family as they explore Chincoteague and Assateague islands. Learn alongside them as they visit museums, a lighthouse, and all things Misty of Chincoteague. Hear a recollection of Pony Penning Day and see famous spots on the islands through the eyes of a curious little bear.

Filled with photographs, this “living book” captures the spirit of the family’s adventure and the events and places described.

This book was written in memory of a special little girl, Lilly, who was born with Trisomy 18.

The front and back covers:

I hope that anyone who buys this book enjoys it.  Thank you!!!!  😊

 

"Newborns with trisomy 13 or 18 can benefit from heart surgery"

I just wanted to share an exciting medical journal article, which finally acknowledges that infants born with Trisomy 18 or 13 are more likely to survive if they undergo heart surgery.  

Note that this article was published in October 2017 - but I don't remember seeing it before now.  Since people are still doing searches and frequently ending up on this blog, I wanted to put this information here.

The article is here:  https://med.stanford.edu/news/all-news/2017/10/newborns-with-trisomy-13-or-18-benefit-from-heart-surgery.html

Researchers at Stanford and the University of Arkansas analyzed data from the largest study of its kind and found that infants born with these two genetic disorders have a significantly better chance of survival if they have heart surgery.  (Heart defects are very common in T-13 and T-18 babies.)

For us parents of these precious children, this is a real "DUH!!!" moment. But to be getting the medical community on board?  That is HUGE!  Those of you that know my Lilly's story know that we had to go all the way to Florida to get her heart surgery because local doctors, here in N.C., would not treat her.  They believed it was "unethical" since she was just going to die anyway.

This belief was common.  From the article:  

 “The thought has been that it doesn’t make sense to undertake a major heart surgery if the patient’s death within a few months is a near certainty,” said Thomas Collins, MD, clinical associate professor of pediatric cardiology at Stanford."

Instead of death being so certain, the researchers found this:

"The researchers found that heart surgery increased survival and hospital discharge on average from 33 percent to approximately 67 percent for these patients, and that this benefit lasted through two years of follow-up. “When we analyzed the survival curves, the data spoke for themselves,” Collins said. “Especially for trisomy 18, the number of babies that survive more than doubles after surgery.”

As one of Lilly's heart doctor's said before her first heart surgery, it was her hope that Trisomy 18 (and 13) babies would one day be treated just as Down Syndrome children were.  (Note that years ago, Down Syndrome children were NOT medically treated well either.  But it finally changed for them.)

Lilly sleeping after her 2nd heart surgery (Nov. 2011)

Lilly waving - on the way home after surgery & recovery!

Lilly's Christmas and the Warrior MAMA IEP Binder

Hi everyone!  I know it's been SO LONG since I've posted.  I actually still think of all sorts of things I'd like to write about but we've been dealing with some intense life "roller coasters" within our family for the past few years and I've had to let some things go, even things I love, like blogging.

Since I like having things about Lilly recorded (for my own record), so I wanted to post what I got her for Christmas last year.  I always buy her an angel themed ornament for her tree.  This one is little vintage angel poodle:

:

Ever since Lilly died, I've put a little red-white-blue Christmas tree at her grave.  However, they just do not hold up well.  So this year I did something different.  I found this adorable deer statute online (from Design Toscano - which is a company that has good quality items) and I tied on a cute bow and some garland:

I think it's adorable!  Hunter pointed out that the deer came already named - "Darby."  He thinks that name is ridiculously silly but we decided to keep it.  I like it.  :)

What finally pushed me to take the time to post today is that I wanted to share about the "Warrior MAMA IEP Binder."

During Lilly's life, I kept a detailed medical binder with all her information.  (I did a short post here about it.)  This huge binder was incredibly helpful, time and time again.  I always had the info I needed right there while at doctor's appointments or at hospital visits.  Medication lists, all her doctors info, notes from her physical therapy and occupational therapy sessions, diet information, printed pertinent emails from case workers, etc.

I remember at a couple of Lilly's hospital stays, the nurses commented on just how helpful my binder was and they wished more parents would keep them.  At one emergency room visit I was just sort of frozen in horror and was having trouble processing.  I handed the doctor and nurse my binder and they quickly got all the info they needed from it and thanked me.

I can not emphasize enough how important it is to have a notebook like this when you have children with any kind of special needs.  

Now I LOVE making notebooks to organize papers in and felt I had everything I needed in mine.  But what if you aren't naturally organized and just aren't into that sort of thing?  What if you're unsure of what all to put in it?  Well you can now buy one that is already put together and full of helpful, guided pages.

NOTE:  I am not affiliated with this product in any way.  I just wanted to share about it because I know how helpful this type of binder is, when you have special needs children.

Lisa, of Organize365.com, is the mother of 2 adopted children with special needs and has dealt with everything that comes with that.  Doctors, special diets, different schools, therapies, etc.  She kept her own binders for her children.  Now she has created one that can be purchased.

If you go to https://organize365.com/WARRIOR-MAMA/  you will see links for information on the binder:

- a podcast

- a free online masterclass

- an unboxing video

- link to purchase the binder

Finally, just for fun, take a peek at the Organize 365's homepage - if you scroll down you'll see a picture of Tabby and I along with an email I sent Lisa.  :)