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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.