Finally Some Answers...

I finally heard back from a couple of doctors on Thursday and Friday. The neurologist called Thursday evening while I was on my way home from work. He stated that he had gotten the EEG results back and everything was perfectly fine. He said there was some slowing of the brain waves at certain times but that was completely typical in Angelman Syndrome and nothing to worry about. Also, Thursday when I got home I received my notice from the radiologists stating that my diagnostic mammogram came back normal. I was a little nervous to say the least that they had requested additional shots, but everything checked out fine. Friday morning I received a call from the genetic counselor starting that the University of Chicago can do a lab test on Kendal to determine if she has an Imprinting Defect. The rate ($450) was much, much cheaper than what we had been previously told and so I will take Kendal by the lab at Vanderbilt when we go back for a checkup to the gastroenterologist in 2 weeks. Things are finally coming together.

I looked into Kendal's medical benefits under our insurance to try determine how things will work when she is kicked off TEIS in March. After seeing the benefits, I then called the insurance company because I thought I had misunderstood what I had read. After the age of three, the insurance company will only pay 2 therapy sessions per month. Kendal is currently receiving 16 sessions a month. I, of course, freaked out as I tend to do. I had already spoken to two therapists about out-of-pocket expenses to hire them so I was somewhat able to calculate the amount per month needed to continue at least speech and occupational therapy - at least $700/month. I then proceeded to call the social worker that we had seen when we met the geneticist for the first time. I explained that I would need to hire therapists in addition to whatever the school system will provide. She asked me some questions and said she would get back with me. She called back Friday evening and said she had exhausted everything and could find no assistance due to our income. I told her earlier that we were trying to move and she advised me that when we move we probably needed to down size and change our lifestyle to provide the Kendal with the therapies she needed. That was hard to hear from a perfect stranger.

She had also told me earlier to look into social security benefits and possibly medicaid to serve as secondary insurance to help pick up the expense. I called both offices and was told that we make to much money to get any assistance. Medicaid said Kendal could possible qualify for one plan but the benefits were very small and would probably not provide any additional benefits that aren't being covered by our primary insurance.

Needless to say, we will be exploring any and every option in the next few months to ensure that Kendal continues to thrive under therapy.


On the homefront - we had a showing yesterday and the couple booked a second showing to see it again today. We will see what happens.