Some Photos I had some fun with

~March 18 Trisomy 18 Awareness Day!~

March is trisomy 18 awareness month, today is 18th and marks Trisomy 18 awareness day! Please spread awareness everywhere to anyone.You would be surprised at how many people have never even heard of this it is one of the most common trisomies out there next to Trisomy 21(down syndrome) everyone knows what that is.So why doesnt anyone know about Trisomy 18!! help me and our trisomy 18 family world wide by telling a close friend,a family member or even a stranger that Trisomy 18 (T18) (also known as Trisomy E or Edwards syndrome) is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. It is the second most common autosomal trisomy, after Down Syndrome, that carries to term.

Trisomy 18 is caused by the presence of three – as opposed to two – copies of chromosome 18 in a infant's cells. The incidence of the syndrome is estimated as one in 3,000 live births. The incidence increases as the mother's age increases. The syndrome has a very low rate of survival, resulting from heart abnormalities, kidney malformations, and other internal organ disorders.



This is my Nolan, born June 25 2009 at 42 weeks 4lbs 10oz 18 inches long Full trisomy 18,VSD and DORV.He needed no assistance breathing when he was born! Nolan only needed an NG tube to help him get nurtrition.At 6 months he discovered baby food and loved it! 13 months old nolan had Gtube surgery and a Fundo repair.Nolan always had a smile who could brighten anyones day.His eyes full of love.We gave our Nolie a chance at life, he lived 19 beautiful memory filled months, he said "dada" and LOVED his big sister Lexi they often laid in his bed and chatted every morning.January 21 2011 was Nolans goodbye, RSV,Bacterial pheunomnia,Viral pheunomnia,and bronchilits took his sweet life, he fought with everything he had. Nolie will forever have a place in our hearts. RAISE AWARENESS!!! TRISOMY 18 IS COMPATIBLE WITH LIFE!!! make a change and tell everyone you know. Nolie's smile is living proof, a miracle.

The day you were born

A picture of our miracle,born June 25/09
so tiny and yet so full of strength.

You

Nolan i think about you every hour of the day, i miss you in everything i do.I know your still here just in a different way,your story i have told so many times in this town since you've left you are still touching the lives of so many and i hope you know this.It's been nearly 2 months now and somedays are better than others you are just simply amazing in everything you did and still are doing.You have gave me strength to still live and take care of your sissy, we go for walks often and i always think about how you would of loved to go in the woods staring at the trees a watching the birds.Sissy loves seeing the deer.My son i cant wait to hold you again,my arms are aching for you.love you.

This a blog i made for my deep feelings.

I will no longer blog deep feeling on Nolans web page as i want it to be a hppy place for me to visit and post happy things about him like pics and videos...feel free to visit my new blog page whenever you want to see how we are doing.Love you all thank you for continuing to follow us, i wont even stop bloggin about out little man!

http://learningtolivewithabrokenheart.blogspot.com/

Nolans Celebration of Life video.

Ask My Mom.

My Mom, she tells a lot of lies,
She never did before
But from now until she dies,
She’ll tell a whole lot more.

Ask my Mom how she is
And because she can’t explain,
She will tell a little lie
because she can’t describe the pain.

Ask my Mom how she is,
She’ll say "I’m alright".
If that’s the truth, then tell me,
why does she cry each night?

Ask my Mom how she is,
She seems to cope so well,
She didn’t have a choice you see,
Nor the strength to yell.

Ask my Mom how she is,
"I’m fine, I’m well, I’m coping".
For God’s sake Mom, just tell the truth,
Just say your heart is broken,

She’ll love me all her life
I loved her all of mine.
But if you ask her how she is,
She’ll lie and say she’s fine.

I am here in Heaven
I cannot hug from here.
If she lies to you don’t listen
Hug her and hold her near.

On the day we meet again,
We’ll smile and I’ll be bold.
I’ll say,
"You’re lucky to get in here, Mom,
With all the lies you told!"