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Emily's Heart Check

Laurie Cepkauskas

Today Emily had her monthly heart check and we were hoping for GREAT NEWS! At her last appointment, we had decreased one of her lung medications. I have noticed that she has been doing very well! She had a cold a while back but was able to fight it at home. She’s gaining weight and getting physically stronger every day. However, i was still anxious as to how her heart was going to look without the help of her Bosentan (lung medication). 

Emilys Heart has always functioned around 35-40%. Which is why she has always been on so many medications. Since having her valve replaced, we thought it was a good time to see what her heart was capable of. To my surprise, her echo today showed that.... drum roll please.... her heart is functioning at 63%!!!!!!! Even WITHOUT the help of her medication!!! This is INCREDIBLE! Her heart has NEVER looked this good! He is even beginning to wean her last lung medication and if in 2 weeks she still looks as strong, she could potentially come off of it. He is hopeful to have her off ALL medications by spring. (With the exception of her Coumadin which is a lifelong medication).

He is so optimistic that this flu season will be drastically different for Emily. He is hopeful that Emily will FINALLY get to celebrate a birthday at HOME!!!! He also gave his blessing for her to start school in February. (Stay tuned for a future blog post about school). 


To celebrate --- use my friends and family code EMILYSHEART for 25% off any lovey or stroller toy or DONATE WITH US to RMH Welcome Bags and "sponsor a child" As Emily begins to get stronger, we will be bringing our lovey on many more Mommy & Me activities and blogging! We want YOU to share your LOVEY stories too!

I just cannot believe how well she is doing! Could we possibly be on the other side of all of this?! Could the medical complexity of Emily be over???? Could i possibly start taking to her to library or to Tyler’s school functions without fear?! Only time will tell but for now, we celebrate this God given blessing and share her stories through these blog updates! 

READ MORE BLOGS HERE! 


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5 comments

  • I would first like to say that you were given Emily because God knew you would be the perfect match. I absolutely love watching for your updates. I am so happy your little Emily is doing much better and sending positive vibes that the uphill battle continues. She is such a beautiful & strong girl. Her smile is so contagious

    Kim

  • This update is absolutely amazing. – I am awestruck with little Emily’s tenacity. She will only go from strength to strength now! God bless you all ❤️

    Wendy Gardner

  • I am so Happy for Emily. Love to you do a live with her when she stands up. she is super cute. I read all your blogs.

    Kristin

  • So glad to read how well her heart is doing …..and hope it continues to get stronger She and you all get special mention in my prayers twice a day.

    Doris

  • So glad to read how well her heart is doing …..and hope it continues to get stronger She and you all get special mention in my prayers twice a day.

    Doris

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