Annie's Children's Developmental Clinic Appointment

Today we took Annie to her first CDC (Childrn's Developmental Clinic) appointment. This is a clinic that the hospital has set up for special needs kids as a way for us to see several of Annie's doctors all in one day. We arrived at 8:00 am and they showed us to our room. Over the course of the next several hours we met with the following specialists: developmental pediatrician, neurosurgeon, orthopedist, metabolic bone diseases specialist, genetics specialist, dietician, physical therapist, occupational therapist, and a social worker. (Next time we'll get to add the pulmonologist to that list. We didn't see him today because we just recently saw him independently.)

Annie had a DEXA bone density scan to test for osteoporosis since she does no weight bearing. Fortunately she has no signs of osteoporosis yet, but they will continue to monitor that. They also did blood work and we now need to start giving her a vitamin D supplement. (It's hard to get out in the sun in Nebraska where the weather is so much cooler, I guess.)

We also are now increasing her baclofen dose which helps with muscle tightness. We are still planning surgery on her right ankle for this fall, but she still has a lot of tightness in her right arm and right knee. Hopefully this higher dose will help, otherwise they will start considering a surgically placed baclofen pump that will go directly into her spinal fluid. We are waiting to get her ankle surgery scheduled until after we get her sleep study results the first part of September. She might possibly need her tonsils and adenoids removed to help prevent her sleep apnea, so we want to get them done at the same time if that's needed. We'll get a soft tissue x-ray to verify that's the case depending on the results of her sleep study. Annie also has some suspicious moles that also might need to be removed while she's under general anesthesia.

We actually left the hospital close to 1:00 pm, so it was a long day, but nice to see so many doctors at once and do some one-stop shopping!