I’m so fortunate to be the parent to Jillian. She’s my eight year old. It seems like a lifetime has passed since she was diagnosed with Klippel Feil Syndrome. The whole first year of her life was spent in doctor’s offices and therapy sessions trying to put the pieces together. In the end, she was diagnosed by a pediatrician who had read an article in his spare time about Klippel Feil Syndrome.
The first few years, we spent in therapy. Physical, occupational, feeding, speech…we had it all covered! She had surgeries to correct her tethered spinal cord and sprengels deformity. Those were the big ones. I know she had other procedures, but they begin to run together. I only remember the big stuff.
Jillian has come so far! Today she is in second grade. She spends most of the time in a normal classroom and is pulled out for special instruction during the day. Academically, she is doing really well. She is behind and does have learning disabilities related to her processing, but she learns and is able to retain what she learns which is the most important thing. She is catching up and has a real desire to learn. We are so proud of her accomplishments this year!
I often find myself saying, “there’s always something” when it comes to physical and medical issues. I remember our pediatrician telling me that syndromes can affect a child “head to toe”. I can’t tell you how true that statement has become. Our most frequent appointments are with ENT and GI departments. She has a hearing deficit and often has ear pain. She has recently been diagnosed with Bilary Reflux after a second endoscopy and 48 bravo probe study. Bile Reflux isn’t fun and it looks like she is relegated to taking medication 4 times a day for the rest of her life. We are adjusting! And she still has some stomach pain so we haven’t mastered this condition yet. She has regular joint pain which might take us to a specialist one day. For now, we are focusing on her other issues.
Jillian is very physically active! She climbs on playground equipment and has participated in jog-a-thons. She avoids gymnastics and anything that puts pressure on her neck, but that doesn’t seem to bother her. When she does do some light gymnastics or a forward roll, it’s hurts. So she has learned to avoid those activities. I love how she handles her medical and academic issues which such confidence. She is just such a bright, happy, and well-adjusted little girl!