The girls busy schedule !

Last week was a busy week for both the girls and mommy. Tuesday we visited with the physical therapist from First Steps. She told us that she would be getting with OT and will set up a schedule as soon as possible. We're still waiting to hear from them. Wednesday they had their fourth EEG to check for any spikes in their brain waves. Paige had to be sedated but Bree was able to sleep, so she did not receive sedation. Yesterday we were scheduled to see their neuro for the results but he called in the morning to tell us the system was down and he was unable to read the tests. So we rescheduled for Friday morning. Friday the girls went to see the cardiologist for an EKG and ECHO. Everything check out okay and he said there's no reason to continue monitoring them. Their arrythmias and thickening of heart muscle were most likely due to their meds and since they have discontinued them they've showed improvement. One health issue we can finally move past.
Yesterday we saw the Orthotist about their cranial molding helmets. They had a mold taken of their heads and the bands should be ready in about 2 weeks. We had to come up with $1000.00 down payment with four "friendly" installments of $500.00. They gave us the "Twin Discount" and knocked off $500.00 a girls; so that was really generous. We're currently trying to get our insurance to cover some of the costs. They'll wear them for three months - going from a few hours a day to wearing them 23 hours a day.
I finally made the phone call to the insurance company to get pre-approval on a genetic test that the girls Geneticist wants to run. The test will look at theCDKL5 gene of the X chromosome to check for any mutation. Mutations on this gene are diagnosed with a neurodevelopmental disease named Rett Syndrome(RTT). RTT is a devastating disease associated with mental retardation and severe neurological symptoms (infantile spasms, severe global developmental delay, and profound intellectual impairment) found mostly in girls. The test is covered and the girls will be tested next Wednesday. The blood will be sent to Baylor College of Medicine in Houston, TX. It will take about 4 weeks for the result.
I pray everyday that this test will come back negative. To think we could have two little girls who will be completely dependant on us for the rest of their lives is to hard to accept right now. Everyday is a challenge to stay optimistic when I look at them as they're laughing and cooing and wiggling and know it could all go away. For now I will be realistic to allow little room for disappointment. I have to stop now - there's good days and bad!