Olivia, “Livvy Lou”, is 20 months old, being on the mild side of 22q she is progressing well and at this point has only minor motor and speech delays. Olivia was born July 31, 2020 in Columbus, Ohio at Riverside Methodist Hospital and to the total surprise to all, she had a cleft palate. So, at 4 days old, she and her parents met with the Cleft Clinic at Nationwide Children’s Hospital. Based on her cleft palate and other facial features it was suggested they have genetic testing done. At a little over 2 months old, her testing did reveal 22q11.2 Deletion Syndrome.
Olivia had her cleft palate repaired at 10 months of age in June 2021 and had tubes placed in her ears. Her parents used the Dr. Browns bottles and with the blue specialty disk, she did well with feeding and didn’t need any special intervention. “I’m so proud of how far she’s come since her palate surgery with now being able to ‘suck’ using typical sippy cups”, says her mom Bethany. With her immune system slightly compromised starting out, her recent tests have shown her to be in the low range of normal. Olivia has also had normal results from her kidney/renal ultrasound as well as her echocardiogram and heart.
Miss Olivia was late to crawl and started physical therapy around 10 months in June of 2021. She started walking at the end of December 2021 and there has been no stopping her! She continued physical therapy until January of 2022 when it was determined she did not need to continue at that point but would be re-evaluated when she turns two. By the end of January, based on typical milestones her language was delayed. She was only saying “mama” and “dada” and really wasn’t even babbling. Even though she understands what is going on and acts on simple commands, Olivia started speech therapy and mom and dad are slowly seeing improvement. She’s babbling and is definitely trying to mimic the shapes/movements that others are making with their mouths and has said 3-5 new words/sounds, with repetition.
Livvy has a 3 ½-year-old sister and in a couple months will have a new brother. “She ADORES her older sister and loves to laugh and play and be silly with her, she is a snuggler, loves falling on pillows and swinging at the park,” says her mom. With mom being a tax accountant and dad a middle school teacher, life is very busy but they still have lots of family time. Her parents are doing what they can to take guidance from specialists, such as recommended physical and speech therapy, and plan to continue staying proactive with her health. They also plan to keep her as “mainstream” as possible and are teaching her that she can reach for the stars and that her capabilities are endless. Mom says, “I’m so proud of her walking (and running at this point), and with two months of speech therapy, I’m proud of the progress she’s made with babbling and imitating more. Most of all I’m just so proud to be her Mommy and that God chose us to be her family. She’s such a blessing!”
And what advice does her mom have for other parents?
“At least from my experience and what seems to be the mild symptoms that Olivia presents, my advice would be to take one day at a time. There’s no way of knowing what kind of developmental delays she may have or what kind of help/assistance she’ll need in school so my advice is to be in the present and try not to worry about the future. I know, easier said than done. A goal for myself is to be flexible and to take my own advice as far as being present and not worrying about the future and the what-ifs.”