Rare Disease Day

Today is Rare Disease Day. Duchenne is a rare disease. Today was also our first cardiology appointment for Cade.

So far everything that has been thrown at us I have been able to just process through. This appointment however, has caused me concern. Cardiac involvement would make things more complicated for Cade. And right now things are complicated enough!

So Cade has his first ever echocardiogram, which is an ultrasound of the heart.

While this process doesn’t involve him being put through any physical tests, it is a long process where he doesn’t get to lay in the most comfortable position. This echocardiogram lasts for 45 minutes.

And we received amazing news!! As of now Cade has normal heart function!! God is so good!!

We want to thank everyone for all the pictures and messages that you sent us today. We could feel you cheering for us and praying for us.

It helped me be able to get through the day with no breakdowns!

We did decide to put Cade on a lisinopril as a preventative measure. Lisinopril is an ACE inhibitor. Basically it helps prevent scar tissue from building up in Cade’s heart.

With DMD, Cade’s muscle begin to transform into fat and scar tissue. Your heart is a muscle so with this medicine the goal is to prevent that for as long as possible.

We have now made is to our hotel and are just relaxing after having spent the entire day in the car and small doctor rooms. I just wanted to update everyone with what I know.

Blessings. Lynnette

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