Conrad the Warrior - a Craniosynostosis Journey

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Conrad the Warrior - a Craniosynostosis Journey

Conrad the Warrior was diagnosed with metopic craniosynostosis at birth. It was confirmed via CT scan. We are preparing for surgery at 4 months old.

Please follow this page for updates on our little warrior.

10/02/2023

🥳 Today is birthday 🥳

14/04/2022

Long overdue update!

In February Conrad turned 2 🎉🎉 he had his annual follow-up with his plastic surgeon and ophthalmologist. Everything looks great as far as plastics is concerned and he’ll see him next year around his 3rd birthday 🥳

At Conrad’s ophthalmology appt, it was determined his optic nerves are small. He was likely born this way and he has no vision deficits that we can observe. He is already showing astigmatism, thanks genetics 🙄😆

Due to small optic nerves, he had to have additional labs drawn that same day back in February. A lot of labs relating to hormone levels. His ophthalmologist also ordered and MRI of his brain and orbits. Because of where the optic nerves come together right in front of his pituitary gland, they wanted to check all the “connections” as well as the pituitary gland. Thus explaining all of the hormone labs.

He was also referred to an endocrinologist to add to our team to monitor these hormones and make sure he continues to grow and develop as he should. We will see an endocrinologist in late June to go over future care and labs.

Conrad was originally scheduled to have his MRI in March but ended up getting croup a couple days before and it wasn’t safe to be sedated with croup. We were rescheduled and Jeff and I were both able to come down with him this week to have his MRI. We stayed on campus at the Renucci Hospitality House. What a blessing for us and other patients to have such a lovely and affordable place to stay! If you’d like to make a donation you can do that here: https://give.spectrumhealth.org/tribute-gift?_gl=1*10dd1jw*_ga*NjY2NTEwNTUyLjE2NDk3ODYwNDU.*_ga_SZGS115WWQ*MTY0OTk0OTM2OS4xLjEuMTY0OTk0OTQ0My4w&_ga=2.80104659.574439376.1649949370-666510552.1649786045 (in the drop-down box select, Renucci Hospitality House). We look forward to staying there again for Conrad’s future appointments.

Before we left for home today, we had a call from the ophthalmology office that his MRI’s are normal 🎉🎉 we will continue with our appt with the endocrinologist and continue to see ophthalmology yearly around his birthday.

We will see plastics and ophthalmology yearly in February, neurosurgery yearly in September, and then whatever endocrinology adds.

Thank you for all of your prayers for our sweet and spunky little guy ❤️❤️❤️

10/02/2022

Today we celebrate turning 2!

1 year ago we wrapped up our 8 month journey with his helmet!

Today we celebrate a happy and healthy 20 month post-op little boy!

God is so good!

15/06/2021

🎉🎉🎉 Celebration 🎉🎉🎉

One year ago, we left the hospital and came home!

12/06/2021

🎈Today celebrates his 1 year surgery anniversary!

🎉 To celebrate , today we are sharing some pictures of his journey immediately before and after his surgery that we haven’t shared before.

📷 This batch of pictures are post surgery and recovery ❤️‍🩹

❤️‍🩹 Please be aware that some of the hospital pictures show immediately after surgery and in recovery in the PICU. Some of these pictures may not be for everyone as the are of him with IV, swollen face, and drains.

12/06/2021

🎈Today celebrates his 1 year surgery anniversary!

🎉 To celebrate , today we are sharing some pictures of his journey immediately before and after his surgery that we haven’t shared before.

📷 This batch of pictures is the day before surgery and the morning leading up to when he was wheeled away from our arms to surgery.

❤️‍🩹 Please be aware that some of the hospital pictures show immediately after surgery and in recovery in the PICU. Some of these pictures may not be for everyone as the are of him with IV, swollen face, and drains.

15/02/2021

Big boy got his eyes checked today ❤️❤️❤️

All is well and he is still good with no glasses 🤓

10/02/2021

turned 1 today! What a journey we’ve been on this past 366 (it was a leap year 😉) days!!!

Wouldn’t change it for the world! He is everything we didn’t know we needed ❤️❤️❤️

And this kid means business when it comes to cake 😆

09/02/2021

helmet graduation day!
😀 ❤️

07/01/2021

had a great time in the snow this past weekend!! I’ll add a video of him sledding to the comments 🥰🥰

It is so crazy to think we are nearing the end of our helmet journey. It seemed so long when we were first starting out, and now I can’t believe he is almost one ☝🏻!

We head to Mary Free Bed next week to see our orthotist and then should be having our final appt in February! Thank you all for supporting us on this journey! We could not have done it without our family and friends! ❤️❤️❤️

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