Pray for Baby Wren

Pray for Baby Wren Wren was born 8/16/16. He has been clinically diagnosed with Kabuki, Hlhs, vsd, and others.

Our sweet boy has been struggling at school. Today we went to Devos and saw his Neuro doc as well as another specialist ...
11/14/2025

Our sweet boy has been struggling at school. Today we went to Devos and saw his Neuro doc as well as another specialist that specializes in kiddos like Wren. So we are starting our 4th adhd medication, to see if this helps. Overall testing was tough, for different test he took. It's never easy to watch your kiddo struggle. He excelled verbally, but they other the test he struggled with. So we're waiting to hear back about his testing scores and hope for some more insight into how to help him. He also had Special Olympics today, it was definitely a long day.

Also, thanks to my parents for doing this all day excursion with us. Matts down sick, I can't drive, so me going on my own wasn't an option. So thank you again mom and dad!

11/02/2025

I'm not crying or anything!

A photo dump and update. Wren had a great summer, and is back to school already. He started 3rd grade this year and stil...
09/12/2025

A photo dump and update.

Wren had a great summer, and is back to school already. He started 3rd grade this year and still loves school. Cardiac wise, hes doing good. We go next month for a check up. Still isn't eating a ton by mouth, and very reliant on his tube feeds. We're trying to find a medication for his adhd that works him, it has been a true struggle. He's growing and staying pretty steady at 40lbs. 😩 It seems impossible to put weight on him. We'll get there someday.

Otherwise hes doing great! Hope ya'll are doing great!

08/15/2025

Study finds that the strongest risk factors for poor transplant outcomes in children with Fontan circulatory failure include low oxygen levels, hospitalizations and significant mental health challenges.

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Lansing, MI

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Wrens Journey Through CHD

My name is Wren, I was born August 16th, 2016. I’ve had a so many challenges through my short life so far, but I am such a fighter.

The day I was born mom and dad were told I was in perfect health. EEEEKKK, they were so excited to enjoy an amazing new adventure as a family of 5! 24 short hours later that all changed. A diagnosis of HLHS, VSD and CDH. I had 2 heart surgeries within the first 5 months of my life, as well as two surgeries on my diaphragm. I had more diagnoses along the way up to this point. My other diagnoses include FTT, dysphagia, G-tube dependent, feeding intolerance, globally delayed, short stature, poor weight gain, Kabuki Syndrome, SPD, speech apraxia and Hypotonia (I think that is all). Even with all the difficulties, and challenges Wren has faced, he continues to be so happy (majority of the time) and shows everyone life isn’t to be taken for granted.

Now we enjoy a our adventure of 5 through the eyes of a more precious life. A life of learning about all the fun quirks that come along with rocking Kabuki Syndrome. All because of one tiny boy who started rocking this world in 2016!!!

#Growingupkabuki #Prayforbabywren #RockingredforWren #WrenStrong