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Jude’s Story

Welcome to our Jude's Journey website. We've created it to keep friends and family updated about our Juderbug.

Jude was diagnosed with a simple eye disorder called nystagmus at 6 months old. At 15 months he started having myoclonic seizures and was diagnosed with epilepsy.

He got ear tubes at 18 months and glasses at 2 years and 2 months which has really helped with his balance and vision. Although his vision is still not what it should be due to a pale optic nerve.

He is undergoing further testing. We are blessed with a team of doctors, early education educators and speech therapists that are helping Jude reach his full potential.

Jude loves Matchbox cars, music and anything his big sister, Lucy, is doing.

Latest Journal Update

Eye Appointment Update

On Friday, we had the opportunity to meet with two vision doctors in Iowa City. The first is a low-vision specialist named Dr. Wilkinson. He tested Jude's vision at 20/200 which is considered blind and his talking points were as follows:

1. Embrace technology. With iPads, audio recording notes, even Google Cars (click here for a cool video), the future is bright for Jude if he learns to use the new technologies available to him. He suggested that we work with teachers who use Smart Boards and give access to the information for Jude using an iPad. Jude already loves his iPad Mini and uses it to take pictures of things to look at more closely. 

2. Remind people that Jude can't see detail. We were given a pair of simulation glasses that helped us understand what he does see. The photo below is what he sees at 20/200 (with his glasses on) next to a photo of what most people see with 20/20 vision. 

3. Let him get close. 20/200 means Jude has to be 10x closer to things to see them.  

4. Jude's glasses do not fix his vision. Jude is nearsighted, so his glasses help improve what he can see up close. 

We then saw Dr. Drack - Jude's pediatric eye disorder specialist. She gauged his vision between 20/200 and 20/300. She confirmed again that his optic nerve is pale. The medical condition is that Jude's optic nerves are near normal size, but pale, meaning it looks like they developed, then stopped functioning normally.  

Because of this, Jude’s disability is more complicated than just not seeing like other kids with 20/20 vision. He actually takes in and processes information differently. 

Dr. Drack thinks that “something” happened when I was pregnant with Jude that may have caused his medical problem with the optic nerve. However, she doesn’t know for sure. So she would like us to get a new opinion by a pediatric neurologist who specialists in genetic disorders. Her name is Dr. Matthews. We will gather her opinion on genetic disorders that cause optic nerve problems. We have an appointment for early January and are on a "cancelation" list to try and get in sooner. 

That said, Dr. Drack remains hopeful that we “only” have a vision problem because Jude is doing so well with his development. He has transitioned well to kindergarten and his teacher said he “has so much potential.” He can write out almost the entire alphabet, and his first and last name. He knows his birthday, address, colors and shapes.  He is also making friends and does imaginative play with them. 

We continue to remember how lucky we have it with all Jude's progress and our access to such world-class doctors and medical facilities. We are also very thankful to each and every person who reads these posts. So, thank you! Have a wonderful Labor Day.

Sarah & Chris

Click here to see a larger photo shown below. 

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Comments

8 Comments

LaRae Buhr
By LaRae
Sounds like he is doing an amazing job in kindergarten! Thanks for posting his progress! We look forward to reading your posts, updating everyone on his progress and any concerns. You are wonderful parents and praying that your appointments continue to unfold answers and solutions.
Cathy Young
By Cathy Young
This is really helpful to read. Thank you! It sounds like that little mind is working VERY well!
Jan Myers
By Jan Myers
What a great post --educational (to me!) and hopeful for Jude and his family.
Many blessings...
Tyann Rouw
By Tyann Rouw
Thanks for sharing the latest info about Jude. He's amazing! Having worked in a kindergarten classroom for a few years, I'm impressed with Jude's skills that he brings with him. Many kids aren't that well prepared at the beginning of the year. Hurrah! I'm so glad he has transitioned well to the new experience. I love the goggles and the photos that allow us to see what Jude sees. Isn't that amazing? He's a cool kid who has touched many lives. Our family is familiar with Dr. Matthews, too. Many wishes for continued success for Jude!
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kem mulder
By Kem Mulder
I am always inspired by your posts and loving commentary on Jude's beautiful life. I believe God gave you Jude to help all of us remember what is truly important in life. Sarah and Chris, hundreds of people have been touched by your story, thanks for sharing with us and God Bless your family.....
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judy Corkery
By judy Corkery
Jude and his loving caring family as always warm our hearts. HIs limited sight has opened our eyes to what is really important in life. Without realizing it he touches so many others with his joyful outlook, glowing smile and his big heart. Guided by his steadfast parents and sisters they are leading the really true way for us to follow. God Bless you all. With love always Grandpa and Grandma
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brenda devita
By Brenda — last edited
Jude and his crazy amazing family inspire everyone. That's the point, i think, in life to try to live to make the world better and you guys get it. Do it. Just as a matter of course. I want to be a better mom, citizen, human every time I read a post about Jude. Cause he is awesome. period. Xoxo
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SHARON SADDORIS
By Sharon Saddori
Chris and Sarah, God has blessed Jude into your loving family. Posting the visual explanation of what Jude sees has helped me to truly understand. Thank you both and God Bless your family. Love and Prayers.
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