Hearing Assessment
Sometimes, when I get really pissed, I get really calm and my arguments are vicious. Glenn told me once he hates to fight with me. I said: Then don't. So that Friday, when I was so pissed, I called all over and talk to so many people it began becoming a blur EXCEPT......Tay was being Tay and was whining about going to school. So I said: Fine get in the car and we ended up being 20 minutes early. It was a sign, a big neon sign that said: GET OVER TO THE PEDIATRICIAN AND GET A REFERRAL! The kids Ped, Dr. Knorr, is next door to Tay's school. Well, Duh! So I went in and asked for the referral I needed to the Hearing Assessment Clinic at Primary Children's. They kind of hemmed a hawe

Dr. Rope and the powers that be
I got lucky on Friday. REALLY REALLY lucky when I got a referral to Dr. Rope at Primary Children's. He, and his staff, where fabulous! Simply fabulous. We took Tay with us too. When we got there Bug colored on the table. Literally, on the paper and then on the table. Oh yippee.They called us in and we gleefully went into the exam room. Bug was not too keen on sitting anywhere. He wanted to roll around on the floor so we let him. Like Madonna.Several people came in before Dr. Rope and did 'things'...checked his height, his weight, his BP, which was wonderful. And then we talked to Julie. She took his history and our history and pictures of the whole family.Tay liked t

Defining surpise
Got a call back yesterday from Penny. I am now OFFICIALLY in love with her and she will be on the Christmas list FOREVER. She said that the Doctor thinks his metabolism is fine after looking at this tests, BUT he also believes that he should not be waiting another 6 months to be seen by a geneticist. SO, she called one and they are getting him in..get this..on TUESDAY the 22nd of September. I am excited beyond belief.He had 3 seizures this morning after 6:00am...so either we got more of the XR in him at night or..well..no idea what just had the 3.

Defining Frustration
Dear heaven above there HAS to be a better way. And NO amount of Health Care Reform will help it. Bug IS on the waiting list for Genetic testing at Primary Children's. Big freaking whoopee. He has been on it for almost 6 months, and still has several months BEFORE he will get an appointment. One year. An entire year is the waiting time. 12 months. 365 days. At 10 a night....3,650 seizures? Even at ONE a night...365? What does it take?I called all sorts of Doctor's Offices at the U today. I called Genetics, The Metabolic Clinic, Dr. Van Orman, Endocrinology, and The Hearing Assessment Clinic. I left a message with ALL of them. Penny at the Metabolic Clinic was the ONL

Didn't I JUST close my eyes?
Bug was tired at 7:30pm. Of course he was, he didn't get much sleep the night before, his sleepless nights do not bode well more often than not and in this case, it was a glimpse into last night. SO, Mom fed him, I gave him his meds at 8:30pm and at 9:00 we headed to bed. At 9:20 I turned off the TV and by 9:25 he was asleep.9:30 he had a seizure. 9:45, 9:55, 10:00, 10:10 and 10:17. I called no joy and broke out the Diastat. He slept. I slept, until the alarm that some little hands set to go off at 12:00am went off. I turned it off, went to the bathroom and snuggled up to Bug who was sleeping soundly and peacefully and closed my eyes.I was awakened by another seizure