CHOP Update

I am pleased to say that things at CHOP went really well today. I started my day at 5am since I had to be up and ready so I could get Abby to take as much cereal and formula as I could by 6 am. We left around 7 to start our day of appointments. My Mom went with me, Brian stayed home with Gracie so he could work at home and my Dad met us at CHOP around 10.

First we saw the eye doc first. The ophthalmologist (who our neurosurgeon said is probably the best neuro opthalmologist in the world. He sees both peds and adults) said that she has a fairly common ocular muscle disorder. Four docs and a grad student took part in her assessment. My theory is that the more residents a doc has the better they must be. :>) They did lots of eye drops and looked into the back of her eye and saw NO PRESSURE on the optic nerve, which is a great sign for no fluid. She will require glasses right away and may require surgery a little later. It will be a bumpy road but that kind of problem I can handle. Next we saw the neurosurgeon and our nurse practitioner. They both said she looks great and is feeling okay about the head size. She is now measuring at 42 1/2 cm which is between the 50th and 60th percentile somewhere.

By the time we had our CT scheduled it had been about 6 1/2 hours since Abs ate anything. I thought for sure she would need to be sedated since she is our little wiggle worm. We had a great nurse who brought us into a sedation room and let us try to get her to sleep. I thought there was no way in hell she was going to lay still long enough. My Dad suggested that we take her in the CT room, put her on the table and see what she did. At first she screamed but after much head stroking and talking she settled. It only takes 6 seconds for the scan but Abby laid still (wide awake and in a trance) for almost 10 minutes while they got the machine all ready to go. She was such a little rock star holding so still. We will hear about the CT results tomorrow afternoon.