EVARetrun to 22q Stories
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Eva Jacqueline was born in June 2006 (Flag Day) in Albuquerque NM. Born to two active duty military members, Eva was the second of our two beautiful girls. Eva was born four weeks early and was small for gestational age at 3 lbs., 15 oz. She was found to have imperforate anus and ventricular septal defects. At that point, they did not necessarily feel that Eva had a particular genetic condition, nor did she have any immune dysfunction or hypocalcaemia that is common with Deletion 22Q. She had surgery on the second day of her life to get a colostomy bag and left the NICU after 17 days. She had some issues with feeding and the high altitude, so she came home with an oxygen tank only for feeding and was feeding without it after one month (not particularly uncommon for high altitude areas). After about three months, Eva started to have some trouble with drinking and reflux, which we now know was due to velopharangeal insufficiency (VPI). She had quite a few difficulties with eating throughout her infancy and toddlerhood, but these are now a distant memory and she is now eating wonderfully, though definitely slower than some children!
At around her 1st birthday, Eva had two more surgeries within three months to have her anus repaired and colostomy reconnected with great success (at 3 she was fully potty trained)! We are thankful to God and for her wonderful pediatric surgeon, Dr. Bryan Weidner, and his staff for making this surgery so successful. Over the next couple of years, Eva continued to make leaps and bounds, and she had always been in the normal ranges with gross and fine motor development.
She was diagnosed at around two with Deletion 22Q. All of her muscular VSDs closed by the age of two and she only has one membranous VSD that remains. At this point, there are no surgeries scheduled, and her VSD has not affected her at all…and she loves to run! At 3 years old, Eva was diagnosed with scoliosis and begun wearing a full- time orthopedic brace. We hope this will prevent the curve from worsening, so she will not have to have surgery. So far, her curve has not progressed to require surgery. Nor has her brace restricted her activity at all, and she continues to run, jump, and play as if she wasn’t even wearing a brace. As with many 22Q children, she also experienced significant speech delays. At the 3 year point, she had only been speaking about 20 words. But at about 3 ½, her speech took off and she began putting 4-5 words together in a matter of a few months. Just after her 6th birthday, Eva had pharyngeal flap surgery to correct the hyper-nasality of her speech and to help improve her overall speech production. She still sees a speech therapist weekly to improve articulation, but she continues to make great progress with her speech every month and began reading at 5.
Despite her speech issues and some mild educational delays, Eva has made so many friends (both her age and much older). She continues to be under the 5% growth curve and is a head shorter than many of her classmates, but they all seem to agree with us that “The best things come in small packages.” In May 2012, Eva graduated from Kindergarten! She continues to amaze us with her positive attitude and loving personality. We are so thankful that God has given us the gift of witnessing His miracles through our sweet Eva. She continues to warm the hearts of everyone she comes in contact with, from teachers and classmates, to neighborhood children and medical providers.
Always remember to enjoy every success, no matter how small… and that many of the difficult times will be replaced with overwhelming joy! From her photo, you can see Eva’s favorite animal…yes, a FROG, which was later told to me stands for (Fully Rely on God)! : )