OLIVIARetrun to 22q Stories
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Olivia and her twin brother R.J. were diagnosed at 18 weeks with serious complications. Olivia had no fluid which made it difficult for her to move and measure her growth. Doctors checked for a heart beat. She must have had a very tiny pocket of fluid hidden that helped with her lung development. Olivia was not to survive birth. Her brother R.J. had 3 major heart defects which would require a series of major surgeries after birth. She was 2lbs 6 oz and R.J. was 3lbs 12 oz. After his 10 month long battle in NICU and PICU, R. J. passed. Olivia survived which was completely unexpected. After several weeks it was determined she didn’t swallow. She required a trach after 6 weeks and a feeding tube. Her physical problems were extensive. She blinked when we brought her home at 6 months, with no facial expressions and extremely low muscle tone. She was diagnosed with arthorgyrposis, but we are not sure why she doesn’t swallow. Olivia now is 3 years old and has done amazingly well. She talks around her trach, rolls and scoots throughout the house to get around, knows the names of all types of food, which is amazing because she cannot eat anything by mouth, knows how to count to 25, knows sign language, colors, shapes, etc. She is so adorable and has an incredible personality and strong will to thrive. We constantly search for a miracle or something that will trigger her brain to send the signal to swallow. We continue to find the best doctors in Chicago. Until then, we tell ourselves “it could be worse” and look at other families less fortunate and are thankful for the life we have been given. We try and find balance between work, doctors, family, and friends. We find time as a couple to enjoy each other as well as vacations alone and together as a family. It is important to enjoy life each day and keep a positive attitude. God bless you and your family. I would be more than happy to discuss what I have learned over the past 3 years. We have a more normal life then most people. Although it is a lot of work and a daily struggle, we feel we are blessed.