As we wind down 5p- Awareness Week...a little about how 5- syndrome affects (or doesn't affect) our daily lives:
May 2013 was the last time Olivia was seen by her developmental pediatrician who practiced with Riley Hospital for Children. Dr. S told us at that appointment that she was moving to Wisconsin the very next month and said she’d refer us to a behavioral pediatrician before she left.
Uh…I’m not sure that happened.
But whatever. At the time we were in Indy for O’s appointment with Dr. S, we went ahead and had her x-rayed to establish a baseline against which to judge whether or not she’s developing scoliosis at any point.
I decided that I needed to be the mom I’ve always been and set up an appointment with our family doctor. He is the doctor who sees us all for regular illness, etc. He’s the one who sent O to the bigger hospital with the NICU when she was born. He acknowledged right then that he didn’t know how to care for her when she was a newborn and couldn’t breathe. I can appreciate a doctor who is willing to admit he’s/she’s over their head and willing to call in the specialists.
At this appointment, I mentioned that I don’t think we actually need to go back to Riley at this time. Without Dr. S there, I don’t really think Olivia needs to see another doctor. Our family doctor can take care of O’s general health needs and she’s not really a medical anomaly anymore.
I told him that a lot of her behavioral issues are resolving themselves with therapies through the school and excellent teachers.
He observed Olivia interacting with her sister. He looked at her spine and her ribs and her hips.
He said that she shows no signs of scoliosis at this time. He recommended having her checked visually every six months and said that if she were his child, he wouldn’t have her x-rayed again anytime soon.
He also said that he agrees with me that as long as Olivia’s behavior doesn’t indicate the need for medication (as in ADHD, etc.) he doesn’t think she needs a behavioral pediatrician.
We agreed that we’d continue as we’re going and change things as needed.
When we were finished with the visit, the doctor actually thanked me for coming in. He said he was happy to have had the conversation we’d had and that it was actually kind of nice to have an appointment when a patient isn’t sick.
I felt a little vindicated by his comments. See, Tom had asked the day before why we even had the appointment. I tried to explain to him what I hoped to get out of the appointment, but I don’t think he got it.
He was the one who had to bring the girls to me and I think he felt like this appointment was a waste of time.
But you know, back in the day when I was searching for answers for Olivia, looking for doctors who would believe me when I said she cried more than most babies, someone who would look at her and see that she was more than just delayed, that there was something more to her than a ‘lazy’ baby, Tom was kind of on the doctors’ side then. And I get it. He wanted to believe them, to believe that she was fine, that she would catch up.
But she wasn’t going to catch up, not without therapies.
One of the best things that ever happened was when Tom had to be the one who was home with Olivia during two of her four weekly therapies. He got to see what the therapists were doing with Olivia. He spoke with these professionals, listened to them, learned from them. From these amazing women, he saw that I’d been seeing for months. Olivia needed help, she needed to be taught everything.
But she’d learned. We all have. And one of the most important lessons I’ve learned in my eight years of mothering Olivia is that I can’t relax, I can’t just let things slide. I have to stay on top of things like scoliosis, behaviors, etc. I need to work closely with her team, her teachers, her therapists, her doctor. As her mother, I am her biggest advocate, her biggest cheerleader, her biggest fan.
She’s got so much potential and it is up to me to continue to work to tap it, to find the right people to help me help her find all that amazing stuff inside her beautiful little brain and her strong little body.
Speaking of…for the record, at O’s appointment on May 5, 2015, she was four feet and four inches tall and weighed fifty-nine and a half pounds. She’s come a long way from that five pound, two ounce baby who was born gray and pale, struggling for her every breath.