At three and a half years old Nate was having recurring ear infections which brought them to a well respected ENT office. They were waiting for the doctor to return with his residence and when he did he was carrying a large medical textbook. He walked over to Eileen, handed her the book, pointed at the words ‘Digeorge Syndrome’ and said “I think this is what Nate has.” In a complete state of shock Eileen returned to her car and began to cry, not knowing what this meant for her son. In that moment she was battling two emotions. Relief that she finally had an answer and guilt for not figuring out Nate’s diagnosis sooner. This was the beginning of Eileen and Nate’s 22q journey.
Throughout this episode Eileen shares her balance of gratitude and grief as a special needs parent. She also shares how she was able to help Nate’s speech and feeding concerns earlier on because she is a speech pathologist.
•••••••••••••••••••
Within this episode we discussed:
- Dragonfly Forest 22q Summer Camp
- For the next 3 and half years he just started having “A little bit of everything: - but nothing so severe that any red flags were raised. Constipation, Reflux - nasal regurgitation, Issues with finding the right formula, Slower weight gain, Sick a little but more than his sister, Walking difficulties, had low tone, feet turned in, Early speech sounds were off - but I could work with him on that.
- Nationwide Children’s Hospital Ohio 22q Clinic
- 22q Family Foundation
- Velopharyngeal insufficiency (VPI) occurs when the seal between your oral and nasal cavities doesn't close completely. The condition is often associated with palate defects or genetic disorders.
- Partial tonsillectomy entails subtotal removal of tonsillar tissue, leaving a margin of tissue on the tonsillar capsule, which may speed healing and reduce pain and inflammation.
- Ear Tubes surgery - a small hole is made in the eardrums and the tubes are inserted.
- Dilated aortic arch aneurysm is a bulge in the portion of the aorta closest to the heart located away from the heart and can involve the blood vessels that supply to your head and neck.
- Hypocalcemia is a treatable condition that happens when the levels of calcium in your blood are too low.
- Getting out of the mindset of always looking for deficiencies and what needs to be improved.
- Balancing grief and gratitude.Grief and gratitude
- "Learning with him"
If you would like to contact the 22q Podcast with any questions, comments or if you are interested on being on this podcast email Becky at 22qpodcast@gmail.com. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.
Instagram - @22q.podcast
Facebook - @22qpodcast
Email - 22qpodcast@gmail.com
#22qpodcast
