Making up for lost time

A year-and-a-half since Ja’Dei Grant was last seen by medical professionals, her parents Dereka and Jarvis Grant are in Miami having their daughter checked out by doctors to determine how best to make up for lost time and lack of therapies as a result of COVID-19 and what steps they now need to take to jumpstart their daughter’s procedures to ensure that she is the best she can be.

“We are just seeing where we’re at,” said Grant. “December 2019 was the last time we saw anyone because of COVID. But I’m happy that we’re starting again, because we don’t want to let things get too far gone or too much older and we have to start from zero where we can’t do anything or have things get much more expensive. I’m happy to begin to make up what we lost.”

Ja’Dei was born with bilateral microphthalmia (a condition in which both her eyeballs were abnormally small) and a cleft lip and palate (birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy).

Up to December 2019, Ja’Dei has already had four surgeries – cleft lip surgery, two eye enucleation surgeries and cleft palate surgery, all of which were successful with minimal side effects. Those surgeries were just to begin the repairs to the abnormalities she was born with.

Her eye surgeries in 2019 involved removal of her eyeballs along with cysts that grew in place of her eyeballs and temporary implants placed in the eye sockets. The surgery involved draining the cysts and putting in implants in both her eyes, but had an unexpected complication with the right eye. The cyst had ruptured and debris, which they later learnt were blood vessels that were supposed to be growing on the inside of her eye – growing on the outside and appearing to be a cyst – had started to fuse to the bone. The eye had to be removed completely and an implant put in. Surgery on the left eye was put off, so as to not put the toddler under further stress, which meant a second surgery had to be rescheduled; the Grants had to find thousands of additional dollars.

The two eye surgeries, which came after surgery to repair Ja’Dei’s cleft lip, took place in March 2019.

Ja’Dei’s parents know their daughter will need numerous surgeries throughout her lifetime. Early 2020, they realized Ja’Dei would need another unplanned surgery, as her doctors recommended her eyelids be sewn shut for at least six months to a year, to stop the toddler from removing the sclera shells that had been placed in her eye sockets to protect her eyes from dirt and bugs like mosquitos flying in and possibly causing an infection. As her eyelids do not close all the way, the shells serve to protect Ja’Dei’s eye socket space.

The cost for the surgery was pegged at $8,500. The cost for each pair of sclera shells cost the Grants $1,000.

While in Miami, the Grants are trying to get Ja’Dei fitted for new sclera shells as she has outgrown her last pair.

The Grants had monthly visits to the United States for sclera shell pressure procedures for Ja’Dei, until she was able to get permanent shell replacements. She was also supposed to have gotten her implants that look like eyes when she turned two.

Ja’Dei had palate surgery in October 2019, and a checkup in November 2019, which meant she was able to graduate from being fed with a syringe to feeding from a bottle and cup. In early 2020, her mom said she was pulling herself up and trying to walk.

Grant said Ja’Dei really regressed during 2020 with the lack of therapy, and that her confidence had slipped back to what it was like in 2019, and that she was trepidatious with standing up or taking steps.

Without access to therapy, Grant said she and her husband Jarvis witnessed their two-and-a-half-year-old toddler lose all the confidence she had built up.

“I wish it [the pandemic] did not happen because I knew she would have been so much further than where she is now,” she told The Nassau Guardian.

Grant’s one wish for her preschool-aged daughter is that she does not miss out on opportunities during her life, because she could not give her something, or people look at her and hold it against her.

During the year-and-a-half Ja’Dei did not receive professional help, Grant said she did her best to work with her daughter.

“It was me trying to do what the therapist does, and I don’t know how to do it. She would cry, so I would stop.”

Grant said she even resorted to trying therapy online, but it ended up being just her talking, which she said did not make sense to her. 

“It’s kind of devastating because I know she could have been much further.”

The only positive change she said is her daughter has gotten taller.

“We have pretty much been in limbo, so to speak, and I’ve been trying to do what I can do on my own.”

As in the past, money is still the biggest issue for the Grants, and as they jumpstart treatment for Ja’Dei, Grant said the few days they are in Miami for Ja’Dei to begin her treatment processes once again, will run them approximately $4,800.

No matter what, Grant said she will always strive to do her best by her daughter. From the day Ja’Dei was born, Grant said she has spoken positivity over her. Despite her abnormalities, Grant said she has always wanted Ja’Dei to grow up knowing that she can do whatever she wants and to know that her parents would do everything to find a way to give her every opportunity. With that in mind, Grant pushed for Ja’Dei to be enrolled in preschool. Since Ja’Dei started preschool, the mom said she has actually seen her daughter show interest in things.

“I see that the intelligence is there,” Grant told The Nassau Guardian. “And I said I don’t want to lose her just being home laying down. She is a very resilient, happy child.”

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source https://thenassauguardian.com/making-up-for-lost-time/