Ellie

I heart my little heart baby. I am head over heels in love with this little miracle. Today I went shopping with my sweet Ellie. While checking out a stranger behind me asked how old she was. I responded, waiting for the typical shock and comment on how she looks so small, when to my surprise the woman couldn’t believe how big she is. I placed my hand on the counter, and tried to hold in my excitement. I didn’t say, well she just had heart surgery, or she has Down Syndrome, I simply smiled and said thank you. I don’t think that woman even realized that she made my day.

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3 Responses to Ellie

  1. Vicki Bartholow says:

    I have to admit that I heart your little heart baby, too. Such a precious baby girl- so glad that she is with us. Xoxo- VB

  2. Breana says:

    I happened to come across your blog randomly and was instantly intrigued not only by your beautiful children but being able to relate to someone medically, finally! Long story short, my first daughter at 16 months passed away last October due to some heavy medical issues (very rough delivery lead to brain damage, emergency c-section. Seizures, feeding issues then later a g-tube, trach, her mentality was always like a newborn up until she passed, we lived in and out of the hospital etc) my second daughter, Ellie is almost 2 years old next month and both of them have the same genetic issue that leads to heart complications. It’s a rare syndrome (Hallermann-Streiff Syndrome), only 200 some people have it world wide. Both of them were also very petite and small for their age, so I understand the comments/looks completely.

    We’re expecting a pacemaker at the very least and more than likely a transplant down the line for my 2 year old. My husband had a heart transplant in Boston when he was just a kid, back in 2000. He also has the same condition but wasn’t diagnosed until much later in his early childhood. Right now, she’s diagnosed with dilated cardiomyopathy and her rhythm is very chaotic. Surprisingly, we haven’t had any hospitalizations so far. We just started Lasix as well as a preventive due to the slow enlargement of her heart. We do a lot of traveling for appointments, about 2 and a half hours. We live in a small town that doesn’t specialize in these kinds of things, so it’s difficult trying to explain this to others. Your posts have been very encouraging for me and I wish your family the best. I understand the struggles and how frustrating this all can be when it comes to doctors and medical. Looking forward to seeing more of your posts!

    • MyaAndEllie says:

      Breana, Thank you so much for sharing your story with me, you sound like an amazing mom who is working so hard for her children. I’m so sorry things have been so hard, you love your children so much and it hurts to see them struggling. I can’t imagine the pain of losing a child. Having a not so typical kid makes you feel helpless and like you deserve a medical degree! I will be thinking good thoughts for your family. Even though you don’t want other people struggling, it’s nice to know other people can relate. Thank you again for your comment and for reading our story.

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