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Jonas's Story

The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning. Thanks for all you've shown us, this is how we feel. Monday, June 1, 2015. On Thursday, my little boy will be finished with Kindergarten. I am so proud of him reaching this milestone! On Friday, we're spending four days at Disney. What a perfect way to kick off summer! We'll ride all of his favorites, plus a couple he wasn't tall enough for last time. We'll eat good treats, meet characters, and swim. These are all...

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Jonas's Story | mynameisjonas09.blogspot.com Reviews
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The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning. Thanks for all you've shown us, this is how we feel. Monday, June 1, 2015. On Thursday, my little boy will be finished with Kindergarten. I am so proud of him reaching this milestone! On Friday, we're spending four days at Disney. What a perfect way to kick off summer! We'll ride all of his favorites, plus a couple he wasn't tall enough for last time. We'll eat good treats, meet characters, and swim. These are all...
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1 jonas's story
2 summer fun/summertime blues
3 posted by erinlee93
4 no comments
5 jonas
6 not normal
7 1 comment
8 roller coasters
9 post fontan
10 mother's day
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jonas's story,summer fun/summertime blues,posted by erinlee93,no comments,jonas,not normal,1 comment,roller coasters,post fontan,mother's day,older posts,followers,about me,blog archive,october
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Jonas's Story | mynameisjonas09.blogspot.com Reviews

https://mynameisjonas09.blogspot.com

The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning. Thanks for all you've shown us, this is how we feel. Monday, June 1, 2015. On Thursday, my little boy will be finished with Kindergarten. I am so proud of him reaching this milestone! On Friday, we're spending four days at Disney. What a perfect way to kick off summer! We'll ride all of his favorites, plus a couple he wasn't tall enough for last time. We'll eat good treats, meet characters, and swim. These are all...

INTERNAL PAGES

mynameisjonas09.blogspot.com mynameisjonas09.blogspot.com
1

Jonas's Story: February 2015

http://mynameisjonas09.blogspot.com/2015_02_01_archive.html

The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning. Thanks for all you've shown us, this is how we feel. Friday, February 6, 2015. Yesterday, Today, and Tomorrow. Yesterday I held your hand tightly, while tears streamed down my face. I could not hold your body, there were too many wires in place. Today I held you on my lap, you barely fit there now. I'll keep holding you anyway, as long as you allow. Tomorrow you will be as tall as me, I can't wait to see you grow.

2

Jonas's Story: August 2012

http://mynameisjonas09.blogspot.com/2012_08_01_archive.html

The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning. Thanks for all you've shown us, this is how we feel. Monday, August 20, 2012. Catheterization, Occulsion, and Good News. Jonas, Luis, and I piled into the car on Thursday morning, August 16th, for our trip to Miami Children's Hospital. After weeks of playing with rubber gloves and shoe covers, and calling himself "Dr. Jonas", he was excited to go. Updates came via telephone every hour, until we drove back to Miami...

3

Jonas's Story: March 2012

http://mynameisjonas09.blogspot.com/2012_03_01_archive.html

The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning. Thanks for all you've shown us, this is how we feel. Friday, March 9, 2012. Jonas the Great Communicator. Having a conversation with a toddler is sometimes confusing, but always entertaining. It goes without saying that I like to talk. It stands to reason I'd bring a child into this world that talks as much as his mommy. I'm sharing this with you, because as I am experiencing this stage of a child's development fo...

4

Jonas's Story: October 2012

http://mynameisjonas09.blogspot.com/2012_10_01_archive.html

The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning. Thanks for all you've shown us, this is how we feel. Tuesday, October 16, 2012. My thoughts will probably be scattered on this one, so bear with me. I'm a member of an incredibly special support group on Facebook, called Heart Mamas. Across the country and around the world, moms with babies of all kinds of congenital heart defects come together and exchange advice and support for each other. As I sit here in bed w...

5

Jonas's Story: Yesterday, Today, and Tomorrow

http://mynameisjonas09.blogspot.com/2015/02/yesterday-today-and-tomorrow.html

The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning. Thanks for all you've shown us, this is how we feel. Friday, February 6, 2015. Yesterday, Today, and Tomorrow. Yesterday I held your hand tightly, while tears streamed down my face. I could not hold your body, there were too many wires in place. Today I held you on my lap, you barely fit there now. I'll keep holding you anyway, as long as you allow. Tomorrow you will be as tall as me, I can't wait to see you grow.

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MOMAMORPHOSIS: My New Standard of, "Clean".

http://amomamorphosis.blogspot.com/2011/09/my-new-standard-of-clean.html

You Are Not Alone. You Are Not Alone. Wednesday, September 14, 2011. My New Standard of, "Clean". My Son, pictured above, in a strategic placing that should express. I think for my Mom, cleaning house was a way for her to work out her feelings and to get some, "peace" from her children, a kind of meditation of sorts. I think my Mom wanted us, her children, to be considerate and tidy but, my Mom took cleaning the home in her hands and I felt more often a bother about helping than anything else. Boy Crazy ...

sistersbyheart.org sistersbyheart.org

Meet Our Kids | Sisters By Heart Website

http://www.sistersbyheart.org/content/meet-our-kids

No two children with HLHS are alike. Each of us experience our own roller coaster of ups and downs. Here are the stories of our current board member's heart warriors. Our blogs and Facebook pages are also listed if you would like to learn more about our individual heart journeys. He is a happy, outgoing child who loves to perform. He loves dancing, singing, and playing outside. Born at Children’s Hospital of Philadelphia in 2010, Kellen was prenatally diagnosed with HLHS. He spent two months in-patie...

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MOMAMORPHOSIS: Too Much For A Facebook Post

http://amomamorphosis.blogspot.com/2011/07/too-much-for-facebook-post.html

You Are Not Alone. You Are Not Alone. Thursday, July 28, 2011. Too Much For A Facebook Post. I left my house at 7:30 pm tonight, a quick jaunt to a grocery store 5 minutes away from my house and, I didn't get home until 8:30. I walked into my home to the strains of the closing music for, "Ren and Stimpy". It was dim and, as my eyes scanned to the left, they rested on the form of my sleeping Husband holding our sleeping Son. So, now, I can explain why my, "quick jaunt" to the grocery store took me an hour.

amomamorphosis.blogspot.com amomamorphosis.blogspot.com

MOMAMORPHOSIS: America Has Very Little Talent

http://amomamorphosis.blogspot.com/2011/09/america-has-very-little-talent.html

You Are Not Alone. You Are Not Alone. Wednesday, September 14, 2011. America Has Very Little Talent. What it if it were Colin, up there, singing his heart out, badly but, bravely? I would hope that my parenting would stop him short of showcasing his belief in his talent in a chicken suit? I mean, I believe in my child but I have a hard time supporting the thought of him beating his head against a wall that will never be broken, while further humiliating himself in a costume or, with a gimmick.

amomamorphosis.blogspot.com amomamorphosis.blogspot.com

MOMAMORPHOSIS: Calling On Souls

http://amomamorphosis.blogspot.com/2011/08/calling-on-souls.html

You Are Not Alone. You Are Not Alone. Wednesday, August 3, 2011. There's always a lot that's left to be done,. And many a battle still to be won. Many a goal that's never been reached. Many the lessons and no time to teach. I hope when I leave my Loved Ones will see. The future unborn that's wanting to be. There were people, there ARE people, alive today, who lived in that era and can tell us what it was like. I think of my Grandfather and, my Paternal Great-grandparents. I just knew that we lived with m...

amomamorphosis.blogspot.com amomamorphosis.blogspot.com

MOMAMORPHOSIS

http://amomamorphosis.blogspot.com/2011/08/there-were-days-when-i-was-at-my-limit.html

You Are Not Alone. You Are Not Alone. Wednesday, August 10, 2011. There were days, when I was at my limit with my Son, when I entertained the idea of bundling him up and sneaking him over to my next door neighbor's house, placing him on the doorstep after ringing the bell and running away, retreating to silence, sanity and the solitude of my home. I'm more in love with my child than I have ever been in love before. It's complicated, this love I have for my Son. I'm FAR from perfect. I say, "NO! At once i...

amomamorphosis.blogspot.com amomamorphosis.blogspot.com

MOMAMORPHOSIS: Auntie, “T”

http://amomamorphosis.blogspot.com/2011/12/auntie-t.html

You Are Not Alone. You Are Not Alone. Friday, December 2, 2011. Auntie, “T”. Auntie, “T”,. I always liked opening up your cards because, they weren’t just cards, they were mini-letters written in your cursive hand, sweet, pretty, sincere. You always put, “T” quotation marks when you signed cards and letters. I always loved that because, your quotation marks said to me, “this is a nickname but, it is not all that I am”. You put on Strawberry Shortcake and , you watched it with me. I loved you for that.

amomamorphosis.blogspot.com amomamorphosis.blogspot.com

MOMAMORPHOSIS: Somalia

http://amomamorphosis.blogspot.com/2011/07/somalia.html

You Are Not Alone. You Are Not Alone. Saturday, July 30, 2011. A friend of mine recently posted this video on her facebook page regarding the crisis in Somalia: http:/ www.msnbc.msn.com/id/21134540/vp/43950698#43950698. I don't think that what I imagine is far from the truth. This unknown Mother. Here's the thing, Americans no matter how much we protest and complain, we know better. We rail against our government because we feel that we expect our government to keep us from behaving badly, like child...

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Jonas's Story

The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning. Thanks for all you've shown us, this is how we feel. Monday, June 1, 2015. On Thursday, my little boy will be finished with Kindergarten. I am so proud of him reaching this milestone! On Friday, we're spending four days at Disney. What a perfect way to kick off summer! We'll ride all of his favorites, plus a couple he wasn't tall enough for last time. We'll eat good treats, meet characters, and swim. These are all...

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