IESBVI families – you are not alone! All families experience struggles and successes. We see you, and we value you. IESBVI families will be highlighted regularly so other families can feel supported and connected.
Meet Ava
This story is written from the family’s perspective. Ava is our first child. Her pregnancy and delivery were pretty straight forward, nothing out of the ordinary. She was developing normally, but around 4 to 5 months, her pediatrician noticed a flatter spot on her head. We were then referred to neurosurgery at University of Iowa for x-rays and CAT scan. It was determined that she had sagittal craniosynostosis. After some long discussions with her whole team (neurosurgeons, ENT, plastics) we decided it was best to proceed with surgery. She had a full cranial vault reconstruction (CVR) at eight months old. She had a two-day stay in pediatric intensive care unit and a few more days at the children’s hospital after that. Then began the long recovery process. She has since had developmental delays and currently receives weekly physical therapy, occupational therapy and speech therapy. Ava has mild cortical visual impairment (CVI) as well, which has played a significant role in her development.
Ava loves cuddling and going on swings. She enjoys time outside and looking at her vision books.
For the past few months, Ava has been able to receive monthly visits with teacher of the visually impaired, Chelsie from IESBVI. Chelsie has helped educate our family on ways to help Ava learn and navigate having a child with CVI. She has provided educational books for us as parents and books for Ava that are specialized for kids with CVI. The strategies and equipment she has provided have been so helpful in Ava making progress with her vision and overall development. Ava especially loves her light box she has on loan from IESBVI. Ava loves cuddling and going on swings. She enjoys time outside and looking at her vision books.
Ava has had a lot of challenges but the team and support system that surrounds her is fantastic. She has many people who are constantly looking for ways to help and make sure Ava is getting every opportunity she needs to develop. Her strength and coordination continues to improve slowly. Her visual attentiveness has greatly improved. My advice to other parents is to celebrate the inchstones and stay consistent with the routines and exercises that your team comes up with. It can seem like there are long periods of time without much progress but then all the sudden everyone’s hard work pays off! Ava has started experimenting with reaching out and touching objects, something we have been working on for months.
I would just like to say how grateful we are to have access to services from IESBVI. We get a lot of advice from everyone on how to work with her CVI but it is such an amazing opportunity to have time with a dedicated vision teacher. I think vision is such an important piece of the puzzle for Ava. Chelsie has provided us with educational and physical tools to help us feel confident with something that can be so scary.
