From Holly's Mom...
I would like to tell you about my daughter Holly Renee Stewart. Holly has been a surprise for us starting with finding out she was on her way. Her second surprise to me came when my water broke at her baby shower. She was two months early but had a full head of hair and other than being skinny and unable to swallow she was fine. Within a week she was swallowing and was released from the NICU at the end of the second week.
We had a few things come up at first with her being so small but she was healthy and happy and loved laughing at her brothers. The pediatrician, Dr. Ebeid, was worried about her head being small, but it was growing so he just watched her. At her 18 month check up, January 2003, he found that her head had not grown since her 15 month check up. He sent us to a neurologist, Dr. Renfroe, who ran a bunch of tests including an MRI in February 2003 and we waited for the results. When nothing much came from the test he took one more and sent us to genetics in April 2003. Since we are military we were offered the chance to go to Keesler AFB and that is what we chose.
In May 2003 we went to see the Multi Specialty Group at Keesler. Holly was seen by several therapists as well as a neurologist and geneticist. They did not run any tests at this time. They wanted to wait on the last test run by Dr. Renfroe, a DNA test for Rhett Syndrome. This took a while but finally came back negative. In August, I requested that Dr. Renfroe send us to someone else due to the lack of activity from Keesler. He sent us to Nemours in Jacksonville to Dr. Arn, a metabolic geneticist.
This appointment also took some time to get and the earliest was November 25th, 2003. So we waited to get in to see Dr. Arn. The doctor went over the records she'd been sent as well as what I had brought with me. She ran a few more blood tests including Angelman's Syndrome. I am still waiting for all the results on these.
During this time Holly also had her hearing and vision checked. She had tubes put in her ears in April of 2003 and has been to the Callahan Eye Foundation at UAB twice for vision tests. The first test, a VEP, told us that there was little to no brain wave on the left eye. The second test, an ERG, told us that she had Retinopathy in both eyes. What this boils down to is she's blind in the left eye and probably sees no more than light and shadows in the right.
On a follow-up to Dr. Renfroe's office in January 2004 a second MRI was requested to compare with the first. We were lucky enough to be able to get it done locally. When the results came through they indicated Hydrocephaly which means water on the brain. A conference between Dr.'s Ebeid and Renfroe sent us to UAB and a neurosurgeon in March 2004.
Dr. Blount, the neurosurgeon, was provided with both MRI's and he told us it was not Hydrocephaly, Holly's brain was deteriorating. We followed this visit with a trip back to Dr. Refroe. He confirmed our fear that this was neither stoppable nor reversible. We have decided to discontinue testing her since the outcome will not change. Our job now is to make her as comfortable as possible and hope she does not suffer. I believe she'll be here for her third birthday but I don't know anything beyond that.
As you can see by the timeline and many places we've been that this past year has been rough on the family. But along the way we have had a great deal of help from people I call Holly's Angels. The nurse at her pediatricians office set us up with Children's Home Society. They have helped us get her therapy started (she sees four therapists), get her medical equipment, and assisted in any way they could.
The therapists, from Pediatrics Plus, have also been of great help. They have given Holly a great deal of love along with the different types of therapy each provided. They often call me or leave notes at the daycare regarding concerns or little milestones they have crossed with her.
I am also lucky that I have my mother here and she is able to take care of my boys when Holly's doctor visits take us out of town. She also takes the boys or Holly overnight to give Joe and me a break every now and then. She is truly a Grandma that would do anything for her Baby's babies.
One more place that has been a saving grace for me and my family is the daycare, Toddlers Haven. They have had my boys since John was 3 and Robert 5 1/2. They are now 8 and 11 1/2. The staff at Toddlers Haven have watched me grow round with Holly and celebrated her birth along with everyone else. Since her problems began they have continued to keep her and love her when many other places would have said no. The owner of the daycare, Hazel Riley, told me once, "You are not taking her someplace they don't love her until you have to". She meant it then and still means it. They continue to watch over my little girl and take great pleasure in painting her finger nails, blending up Happy Meals & Egg Mcmuffins for her, and before I cut it, styling her hair. Hazel and her employee's let me know when they see something different in her or if the boys are having a problem.
I have also found great support from the mothers at the boys Karate Dojo and my fellow employees. All of these people have been a help to us and continue to be so, from a hug to a CD of comfort music.
I want people to know about my beautiful baby girl and how much joy she has brought to me, my family, and the many people she has touched over the past 2 1/2 years. I also want people to know about the wonderful community that has both offered and provided help, comfort, and love to Holly and our family.
-Cyndi Stewart