Three weeks ago I was headed to Michigan with Joe and I got a phone call from Courtney’s school saying she seemed uncomfortable as if maybe she had a UTI. Three weeks ago I cried via texts messages with our nanny as Courtney was catheterized I order to get a urine sample. The past 3 weeks she has even to the dr 3 times, I’ve talked to doctors/nurses so many times that I’m pretty sure they know my phone number by heart. We’ve gotten positive then negative then positive then negative urine tests. She completed 10 days of an antibiotic. In the past 3 weeks I’ve seen my daughter cry in pain and bite herself to the point where she has bruises that look like she’s been abused. I’ve received texts and emails from school and caregivers who have seen the same behaviors. I’ve left work twice and have taken other days off. Yet I sit here with no answers.
What have I learned though?
I’ve learned that being her voice is my most difficult job title of all but learning to be her voice has made me so much stronger.
But the biggest thing I’ve learned through this whole ordeal is the importance of building a network you trust. Courtney requires a network of specialists. Specialists from therapists like speech, feeding to doctors like dentists, gastrointestinal doctors, developmental pediatricians and regular pediatricians. Finding these specialists for a child with special needs is so much more than googling pediatricians in your area.
After the last 3 weeks I have learned that I have not found the right pediatrician for Courtney. This whole ordeal has been beyond frustrating. I can’t even begin to explain what it’s like to watch your daughter experience pain and have no way to express that pain except by inflicting pain on herself and others. Today was the icing on the cake. After spending 90 minutes at the dr trying to get Courtney to pee with no success, it became evident the Dr knew nothing about her because she asked several times if Courtney was saying it burned when peeing. The doctor talked to her as if she was typical. Then we were sent home with a cup for her to pee in with no answers.
So here we are, 3 weeks later and still no idea why she has moments of pain. No idea how to help her and now On the search for a new doctor.