Today Was a Good Day!

Every time I hop on here to write a post, the words flow. For some reason, today, that’s not the case. I feel kind of stunned, shocked, and almost confused, because today Isla’s doctor said her heart looks 100% normal. Normal!!! After her echo and EKG today, Isla is ready to come off of her one and only heart medication. I really never knew if this day would actually come. While we have some more steps to take, such as more blood draws, echos and potentially heart caths to monitor her progress, we are now on a different, and much better path.

One of the things I have been thinking about is how innocent Isla is. While we received some amazing news today, Isla can’t celebrate with us because she doesn’t even know what she has been through. Can you imagine the innocence of someone who has endured so much, but doesn’t even know it? With the news today, we might be able to maintain that innocence. For that, I am so relieved and grateful.

We are now living in uncharted territory, and she will likely be monitored by her Cardiologist until she is an adult, even if things stay normal. PH is a part of us now, and we will always be a part of the cause. The PH community needs more stories like Isla’s. Some day. One day. #PHAware #miracleshappen

 

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5 thoughts on “Today Was a Good Day!

  1. What wonderful news! I am so happy for you all. I have a picture of her in my cube at work – it always makes me smile. She is inside what look like a child’s kitchen hutch with her head popping out the hole. The look on her face is priceless – she’s either in big trouble and hiding or she’s stuck and wondering how to get out. We love you Chuck and Carolyn Seevers

    On Mon, Mar 26, 2018 at 11:11 PM Isla The PHighter wrote:

    > ellie4dyce posted: “Every time I hop on here to write a post, the words > flow. For some reason, today, that’s not the case. I feel kind of stunned, > shocked, and almost confused, because today Isla’s doctor said her heart > looks 100% normal. Normal!!! After her echo and EKG tod” >

  2. Hi I work at Smiths Medical – we make the Legacy pump. So thrilled to hear the amazing news!! Would you be willing to share your experience with us? What worked well, what did not? Best wished to you, Isla and the rest of your family. Chris

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