Life Through Joni's Eyes

Jasmine shares her story about learning that her daughter's eyes not focusing was more than just a slight developmental delay.

1. Tell us a bit about yourself and your family!

My name is Jasmine Edmond. My family and I currently live in Sweden, where I am a teacher and my husband is a stay at home Dad. We are both originally from Dallas, TX, but we’ve been here in Sweden for a couple of months after living in the Dubai since January 2016. Since we’ve lived abroad, we have welcomed 2 beautiful little girls; one in May 2017 (Jael) and another in November 2018 (Joni).

2. Tell us about when the doctors told you about Joni's condition.

Since our youngest, Joni, was born we noticed that she did not focus or track objectives like she should have been. Actually her eyes were, for a lack of better words, just rolling around all the time. At first our pediatrician attributed it to her just being a newborn and her eyes still developing, but when we went in for her 2 month checkup and still noticed basically the same behavior, our pediatrician then became concerned. She recommended a pediatric neurologist and ophthalmologist. The ophthalmologist said it was still too early to diagnose anything but he did say she was a bit far sighted. The neurologist diagnosed her with congenital nystagmus due the roving eye movement and also ordered and MRI. (Let me add that he did recommend for us to revisit the optho again at around 4 months because the optho would give the final diagnosis as to if she truly had nystagmus or another eye condition.) The MRI came back normal and no signs of any neurological conditions but he did recommend visual therapy and physiotherapy because she was lagging behind when it came to trunk lift and head stability.

Although we do not have a concrete diagnosis at this time and probably won’t have one until Joni is 9 months at the earliest, we are starting to believe that she may have Cortical Visual Impairment also called Cerebral Visual Impairment (CVI). She exhibits all of the characteristics of a child that would have CVI. The earliest to officially test her for CVI is 9 months. CVI is not “curable” for a lack of better words; however it can be greatly improved with therapy and other types of accommodations that will help to repair the visual part of the brain that has been damaged and she could hopefully lead a fairly normal life. Our current visual therapist actually specializes with working with children who have CVI, so it’s looking positive.

3. Please share with us about Joni's therapy sessions.

As of right now Joni goes to physiotherapy and visual therapy every other Tuesday. Of course our initial visits were to see what type of help Joni actually needed and then a plan was set on how to assist her. During physio we work on training her on basic motor skills that an infant would need or use when it comes to lifting up the head or pushing up the trunk, rolling over and eventually pushing herself up from a lying position. We (parents) then take the exercises home and do them every day with her prior to tummy times. During visual therapy we work a lot on getting her to see using her peripheral vision by using single colored or glittery objects with the help of white, yellow or red lights. It is important to understand that she can see but we are not sure on exactly how the images are coming across; we focus on her side vision because she tends to lock in on either her right or left side and eventually the goal is to get her to track objects (slowly) to the midline of her body therefore helping her to use her front vision.

Since we have begun therapy Joni has shown vast improvements in both areas. She is now able to hold her head up without support, push her trunk up on her own and her tracking and initial acknowledgement of objects has improved and she has even now started to look forward for short periods of time. Other than this, Joni is a very happy and normal baby!

4. Will there continue to be a need for Joni to have medical procedures in the future?

As of now we are not quite certain. After our last visit to the neuro, he was amazed at how much her nystagmus had improved and said that it was basically nonexistent. We also have since gone back to the ophthalmologist and got a second opinion from another and both have said that they actually don’t think she even has or had nystagmus but there is an issue with her eyes but we are still not certain on exactly what it is and we are currently awaiting approval for an ERG which will test to check the signals that are being sent from the eyes to the brain. According to both opthos, her eyes and all their pieces are healthy so there is something going on with the connection to the brain. They have also recommended that we continue visual therapy because it is helping.

Currently, we’re awaiting DNA test results to see see if she has a neurogenetic disorder. Her vision has improved with therapy but it is not normal, just better than what it was.

6. What words of encouragement do you have for other mommies who find out their babies have medical conditions?

It’s ok to be upset and worry, but after you get that first cry out, let it go... do whatever you have to do to help improve your baby’s quality of life and LET GOD! Prayer works! Make sure you have a supportive community of family and friends around to assist, love and pray for you and your little one.

7. How did your babies handle teething? What symptoms did they show?

Well so far I have truly been blessed when it comes to teething. Joni isn’t teething yet but when Jael was teething she NEVER fussed or even acted like she was teething. The only way we knew she was teething was because we saw TEETH! LOL

8. What are your thoughts on the Dents de Bébé teething necklace(s) you've worn?

I love my DDB teething necklaces! It’s feels great to be able to wear something not only fashionable but also safe for my babies. Every time I wear one of my necklaces I receive compliments and when I tell people they are actually teething jewelry they are always quite surprised. I also love the variety of styles that are available; you can be casual, chic, or boho! I have a few friends who either just delivered or will be delivering soon and I can’t wait to gift them a necklace or two!

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