We had a follow up appointment last week with Oaklynn's Geneticist. She asked us how Oaklynn was doing and just got caught up with changes that are going on. She set us up to get an EKG (heart problems are common in Rett girls) and an x-ray (scoliosis is common in Rett girls). She has a place on her spine where the bone sticks out far and it's always bruised. She wanted to get an x-ray to see what is going on. She also referred us to a pediatric orthopedic surgeon. Because the way her feet turn in, she wanted her to get looked at by a specialist and also have him look over her skeletal structure to make sure everything was OK.
When we were done with the appointment with the geneticist, we walked about 10 feet to the next waiting room and waited to get the EKG. We didn't have an appointment but they were able to get us right in. The EKG took about 30 seconds and then we left. She did really good and just laid still the whole time.
We now just have to wait to hear back from the geneticist about the results. We are VERY pleased with our geneticist and love her. Oaklynn seems to really like her and she does a very good job at answering all our questions. She also makes sure that we see the correct doctors we need to so that Oaklynn is getting seen by all the doctors that she needs to (and refers us to the best). I will let you know once we find out the results.