Midlothian, Virginia (VA) (right outside of Richmond) - Full Trisomy 13
Benefit on Nov 7, 2008 Powhatan,
Inspired by Veronica Cummings.Veronica’s Voice
|"Each day that we spend
with her is a gift from God. Each day with her brings challenges but
also valuable lessons for life."
Mom and Dad holding Baby Roni.
Update on Veronica 8-8-08
She is now twenty months old! There has not been any major issues except
chronic ear infections that make her feel pretty miserable. She is trying to
crawl and is able to get up on all fours. She rocks a little but loses her
balance and falls.
- - -
By the Grace of God our Baby Roni turns nine months today. She is growing
slowly but surely as she reached 12 lbs and 11 oz at her last check up. As
she's gotten older, Early Intervention services have been more constant and
she seems to be doing very well with it. She has learned to calm herself,
smile and our biggest obstacle thus far has been teaching her to eat with a
spoon. Because of her raised pallate, this has not been easy, about half of
her spoonfuls actually get swallowed. We have also been trying to help
strengthen her muscles so that she may lift her head on her own, roll over
and maybe one day crawl!
Although overall Veronica is doing exceptionally well, there are a couple of
things that have raised our concerns. Her ophthalmologist believes that she
is blind, so we have scheduled a more extensive test at a later date. I feel
as though at the very least she will respond or "track light" from time to
time. A vision specialist is working with her as well to see if the right
stimulation will enable to at least have limited visual ability. She is also
having quick, jerky "ticks" or movements that have yet to be diagnosed. Her
neurologist says that no evidence points toward seizures so far, but we have
opted for an eight hour EEG for clarification as to what these episodes may
be. Lastly Veronica has had some trouble moving her bowels over the last
couple of months. We have been assisting her with her bowel movements using
lots of Vaseline and Q-tips. She is on Regland which is supposed to help her
food move through her digestive tract easier, but maybe a stool softener is
something that we will need in the future. We plan on discussing that with
our pediatrician at her next appointment.
Veronica is a fighter and has overcome so many obstacles in the beginning of
her life. As each day passes, it gets easier to handle all of the extra
responsibilities that goes along with our special baby. If anyone has any
questions or comments for us please feel free to write an email. God Bless.
Ronnie and Christina Cummings
- - --
Veronica Lynn Cummings was born on December 17, 2006. She was 5 lbs 6 ozs
and 19 inches long. It was a complete shock when we realized that she was
born with extra digits and a large scalp lesion in the back of her head. The
doctor on call who delivered Veronica was uncertain of her condition, so
they allowed us to kiss her and immediately took her to the NICU. An hour or
so later, we were visited in our room by a geneticist who informed us that
she suspected Trisomy 13. Words can not describe our thoughts and feelings
during that moment when we heard her prognosis of this rare disorder. My
family and I were in complete shock because nothing was suspected by my
doctor during pregnancy. The geneticist explained that her suspicion was
because of Veronica's extra digits, scalp lesion, "rocker bottom" feet and
different looking facial features from Mom and Dad. The hospital then
transferred her to another hospital more equipped for her needs.
The last three months have been a blur. Veronica only spent six days in the
NICU, we have kept ourselves very busy with follow up appointments and
unexpected visits to the hospital. We have found that Veronica is fairly
healthy right now. She has been bottle fed from day one and we use a apnea
monitor to check her breathing. She does have reflux a tethered cord,
malrotation of the stomach and a possibility of being blind. None of the
issues pose an immediate concern, but may require surgery at a later date.
Baby Roni is a complete blessing to our family. She is beautiful in every
way. Although this has been the most trying time of our live, just holding
our daughter makes it worth while. Veronica has proven to be a fighter and
remains strong even after everything that she goes through on a daily basis.
Each day that we spend with her is a gift from God. Each day with her brings
challenges but also valuable lessons for life. As a family, all we can do is
take each day as it comes. Please keep us in your prayers as all of you are
Ava holding Baby Roni
Ronnie Cummings (Baby Roni's Dad)
Christina Cartagena (Baby Roni's Mom)
Ava Cummings (Baby Roni's 2 yr old sister)