Fuentes Family-Case Study

Fuentes Family-Case Study

Glaucoma

Family Motto- “We can do anything we want to do- we just do it differently!”

Introduction

This is the Fuentes/Zepeda family. They live and go to school in Grand Prairie. The children attend Austin Elementary, which is their neighborhood school. Jose and Sofia have 4 beautiful children; Adriana, Rebecca, Ydie, and Fabian (not pictured). Adriana is 9 and is in the 4th grade, Rebecca is 8 and is in the 3rd grade, Ydie is 6 and is in the 1st grade, and Fabian is 4 and will be starting Pre-K this year. The girls are called Sunshine 1, 2, and 3 by their TVI. They were excited to be interviewed for this case study.

Sofia

Mom is 36-years-old and has Glaucoma. She was diagnosed at 5 days old. She was the first one in her family to be diagnosed with Glaucoma. She also has significant heart problems which she has been told could be related to her Glaucoma, but it hasn’t been confirmed. Mom lost her vision in her right eye at 10-years-old and received a prosthetic eye when she was 18-years-old. She has had multiple surgeries. She was seen by a Vision Teacher growing up, and knows Braille, but states that her parents had to fight for her to be able to go to a “regular school”. She is grateful that things have changed and her girls are able to stay at their school and be in regular classes. Growing up, mom was able to work various jobs and attended college. She eventually quit working to stay home and start a family. She would like to work again now since her children are school age. She attended the Criss Cole Rehabilitation Center (CCRC) which is a vocational rehab training facility. There she learned how to do many things- while being blindfolded. The goal was to prepare her for life without vision, if that were to happen, eventually. She took a one year class and even made a large piece of furniture, a chest, with her blindfold on. She learned computer skills and JAWS as well. Within the last month she has now completely lost all vision in her left eye. She only has a small amount of light perception. She is having a cornea transplant and a cataract lens put in her left eye, in September, in hopes to restore some vision. Mom has dealt with the grief and guilt of passing this condition on to her children. But she is also teaching them to be resilient and to be the best they can be. She is an example to them of overcoming her vision loss and still being able to have a “normal” life.

Adriana

Adriana is 9-years-old. She was diagnosed with Glaucoma at birth. One of her corneas was cloudy. So far, she has had 3 surgeries on her left eye and has a cataract lens replacement. On her right eye she has had multiple cornea transplants that her eye continues to reject and drainage tubes. She has had multiple tubes put in each eye to drain the fluid. She uses drops in her eyes daily to help maintain the pressure to ensure that it doesn’t get too high or too low. She has not learned Braille at this point. She receives consult O&M while in school.

Rebecca

Rebecca is 8-years-old. She was also diagnosed at birth. Rebecca is able to use her vision. She has only had one procedure at 10-months-old to put drainage tubes in her left eye and a cornea transplant. This tube and the transplant have maintained over the years and haven’t been replaced yet. She also uses the eye drops to maintain the proper pressure in her eyes. Her right eye is fine. She has not learned Braille at this point in time. She receives consult O&M while in school. Her vision is considered the best out of all of the girls.

Ydie

Ydie is 6-years-old. She was diagnosed at birth. She also has a heart murmur. Ydie has no vision at all in her left eye and will receive a prosthetic eye in the next few months. She has had multiple surgeries and had several cornea transplants that continue to be rejected and now has a prosthetic cornea on her right eye. She uses eye drops daily to maintain the pressure in her eyes. She is in the process of learning Braille with her TVI. Ydie also receives direct O&M and Occupational Therapy while in school.

Fabian

Fabian is 4-years-old and is the baby of the family. He chose not to participate in the interview or the family picture. He had one surgery on his right eye to have a tube inserted. So far, that is all he has had. He received Vision services as a baby but was dismissed because he no longer needed them. According to parents, he is beginning to develop light sensitivity and they will request that he is evaluated again once he starts Pre-K. He uses the eye drops as well daily.

Jose

This was dad’s first and only experience with Glaucoma. Before meeting his wife, he did not know about it, but knows plenty now. Dad is the family’s caregiver, homework helper, driver, chef,

“eye-drop” specialist…you name it, he does it for them. Dad struggled with his first daughter’s diagnosis. He did not want her to endure surgeries and things that he had seen his wife have to struggle with. He was not familiar with Glaucoma at all so it was frightening to see his children develop it.

Treatment

As stated, Sofia and all of the children have a daily regimen of eye drops to help control the pressure in the eyes, in addition to all of the surgeries they have each endured. The family members are very different in terms of how many drops and how many times per day. They are also all followed by numerous doctors. They see Pediatric Eye Specialists and Glaucoma Specialists…Dr. Norman, Dr. Flowers, Dr. Godfried, Dr. Bowman, and Dr. Spencer, to name a few. Mom and Dad are satisfied with the level of medical care they have received over the years. They have not had to fight for justification of procedures. Their doctors have tried to ensure that all measures are taken to ensure adequate care for the Sofia and the children. Mom stated that her doctors are disappointed that more couldn’t be done for herself and for Ydie to save the vision that they had.

Services

The family receives services through DARS. They are able to participate in various educational trainings, family outings, receive toys and VI equipment, play sports, holiday events, and interact with others with similar circumstances.

While in school, each girl has a TVI. They use magnifiers, large print materials, CCTV, and real items for tests and activities. They receive preferential seating and classroom buddy helpers, as needed. Also, when is it is time for annual ARD meetings, the school schedules them 30 minutes apart so the family is just there for one block of time.

Conclusion

Both parents are hopeful for the future of their children due to advances in technology and in medical care. They both put a lot of value on the children’s education and see the importance of them doing their best, despite their disability. They still have chores, still get disciplined, and are still held at a high expectation by everyone. Despite the numerous doctor appointments and procedures, they miss very little school. Appointments and procedures are made after school and during the breaks, when possible. The family receives help from other family members and from their church family. When asked about their challenges, mom and dad both looked puzzled…they said they never really thought about it…they just live day to day and take every moment as it comes. Mom finally said that the biggest challenge is probably the numerous doctor appointments and juggling who goes where on what day, and of course the planning of what to eat on those doctor visit days and getting homework done, and finances, and just staying organized. Now, when asked about strengths, they both agreed that their close-knit family and love for each other is their strength. They have great communication skills as a family and do everything together- even grocery shopping! They have trust in each other and in the children so that everyone has a job to do and everyone must complete their job to help out the family.