Update

On Tuesday I received a call from Dr. Koetsier, Jordan's pediatrician. He had the report of the MRI and said that it basically stated that there was mildly diminished white matter and that it was indicative of cerebral palsy. This confirms what Dr. VanDyke said several weeks ago. We hope to get more details on this report at her appointment tomorrow.

At today's MFB therpay, Jordan had gained weight and grown in length - she was 15lb 2 oz and 26 3/4 in. That put her at about 3% for length but still significantly below the chart for weight. Jordan has been doing very well with quantity and has been doing okay with safety - she has taken between 18-27 oz of thickened Pediasure per day for the past week. We are using a very unusual method of feeding - Ellen said that she has never had to do this and that hopefully we will be able to work something out so that I don't have so much work invested in feeding her - it takes about 1/2 hr 6 times a day (not at our meal times). We start with 2 oz thickened Pediasure and 1 oz of thickened apple juice by spoon - 2 to 3 spoons of P and then a spoon of AJ to clear her out - also anytime she sounds like she is getting wet and gurgly. Then we move to a bottle with thickened Pediasure - she usually takes from 2-4 oz. This gives Jordan the ability to eat from 2 separate methods before fatiguing with each.

Tomorrow is Jordan's BIG appointment with Dr. Burdo-Hartman. Our appointment is at 1:15 and she will be there for 2 to 3 hours. Derrick has the afternoon off so he can be with us for this evaluation. Dr. B-H is a neurodevelopmental specialist - she will also be evaluated by a behavioral psychologist, occupational therapist, speech therapist, dietitian, and nurse practitioner. This multidisciplinary approach will allow them to together come up with a overall diagnosis and treatment plan that should cover all areas of Jordan's development. My biggest concern of this appointment is that Jordan normally takes a nap around 2pm. I will try to get her to take a late, long morning nap before heading to the appointment so she's able to make it through the appt.

Please pray for Jordan for this appointment as it is a very important step in determining what is going on with her and what we need to do to help her. Please pray also for Derrick and me, that we are able to understand and retain the information that we are given. And finally, pray for my parents as they have Mak and Conner today and tomorrow to help us to not have to worry about them during this important time.