![]() We could not do this by ourselves, we frequently lean on friends and family for support. We cope by knowing that the Lord is walking alongside us all the way. She was recently diagnosed with velopharyngeal insufficiency and will need a pharyngeal flap surgery in the near future. Kinley’s main issue at this age is speech. Our days are still filled with appointments, but with less providers and lots of speech therapy. She’s come a very long way from her early diagnosis. ![]() ![]() Her favorite things to do are reading, coloring, playing, swimming, riding her bike, and dancing. Kinley is now 5 years old and is doing remarkably well. To date, Kinley has had 7 surgeries, including 2 Open Heart Surgeries, G-Tube place & removed, Ear Tubes, Tonsillectomy, and Adenoidectomy. For these specialists and services travel is required to multiple cities. She has needed services that included feeding/speech therapy, occupational therapy, developmental therapy, and physical therapy. She is or was followed by cardiology, endocrinology, pulmonology, infectious disease, GI, genetics, neurology, orthopedic, ophthalmology, ENT, immunology, audiology, hematology, allergist and pediatric surgery. Due to her 22Q11.2 Deletion Syndrome, Kinley has several issues. Most days were filled with some sort of appointments, whether it was doctor, labs, or therapy. We were told that Kinley would probably never walk or talk and that she would not be very intelligent. It was confirmed that Kinley had 22Q11.2 Deletion Syndrome. Due to multiple complications, the doctors suspected some sort of chromosome disorder and ordered additional blood test. During which time Kinley suffered from airway and feeding issues resulting in placement of a g-tube and an infection leading to a PICC line that we would later come home with. Kinley’s recovery from this surgery was complicated and required a 10 week hospital stay. She was diagnosed with Interrupted Aortic Arch Type B, hypoplastic aortic valve and VSD and underwent her first open heart surgery when she was just 16 days old. ![]() She was transferred to the nearest NICU and additional testing was performed. Kinley’s heart defect was identified when she was two days old. ![]()
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