We had our first evaluation today with Jenelle's Neurologist, Dr. Steven Phillips. Because of a connection with a very good family friend, we were able to get an early appointment for Jenelle, rather than wait until the end of July. Dr. Phillips seems to be very good at what he does, is up front and honest about what we are going to be facing. He ordered an MRI, and requested it "stat" so that we shouldn't have to wait very long once we get authorization from our insurance. We are told that the process for the MRI will involve Jenelle being sedated, possibly intubated and may also require her to stay the night in the hospital for monitoring. Basically, she is going to be "put under" like anyone would be for surgery.

He gave us an initial diagnosis of Hypotonia, which means low muscle tone and function. He told us that visually speaking, the left side of her head appears to be smaller than the right, which would indicate that there may be something wrong with the left side of her brain. When he saw the shape of her head, he seemed concerned, without really having to look at her development delays. The left side of the brain does control motor function, as well as speech and cognitive ability, so that would make sense with her delays. He didn't say much more than Hypotonia, but when I mentioned Infant Stroke, he said that was another strong possibility.

So now, we wait for our insurance to approve the MRI request. Dr. Phillips told us not to be concerned initially when we have the MRI is the technician says something about what they see. Infant MRIs need to be read differently than an adult MRI, so what looks bad for an adult, may not necessarily be bad for an infant. We should not expect the report to be done for at least 2 days after the MRI. He was going to have the results read by a specialtist who is experienced in reading infant MRIs. Our next appointment with Dr. Phillips will be in 2 months, on July 22, 2003. This appointment is still earlier than the initial appointment we were given without using our connections. We are forever grateful for our good friend's assistance in that regard.

We met today with the Physical Therapist at ICEC (Intervention Center for Early Childhood) for Jenelle's initial development evaluation. They checked all of her areas of development and confirmed that she is behind in fine motor, gross motor, and cognitive areas of development. They showed us a couple of things to work with, but overall it was mostly evaluation. They recommended that we try to get a referral to a Pediatric Opthamologist to have her sight checked. She can see things like light, but does not respond to colors or other stimuli when held in front of her face.

We were told to expect to hear from Regional Center at the end of the week to discuss Jenelle's "Physical Therapy Plan", and which programs she will start, etc. Her first appointment with the Pediatric Neurologist will be this Friday.

We had our initial meeting and evaulation with our Case Worker for Regional Center. She was very frank and honest, and also encouraging at the same time.

Jenelle's biggest problem at this point is her inability to use the right side of her body. We never even realized it, but she even tilts her head to the left and not the right. She has little strength in her right arm and hand, and appears to have pain when we turn her head in that direction. The encouraging news is that it just could be caused by poor muscle tone. In her early months, she may have tried to turn to that side or do things with her right hand, but because it was too difficult, she gave up, hence why she doesn't use it much and favors her left side. Since our visit with the Pediatrician, both Brett and I have been working with her to get her to support herself on her legs. She is improving, which is also encouraging in that we can work on a problem area, and she shows improvement.

Although she doesn't follow a rattle, or turn to the sound of noise, the intake person did feel that she can see and hear. She noticed Jenelle's eyes follow my voice, but she has difficulty straining her head to see me (I was sitting on her right side) Again, the encouraging part of this is that because of low muscle tone, she just could be giving up on trying to grab things or turn to sounds simply because it is too difficult for her. That can be improved with muscle tone.

Overall, she definitely felt that we can get Jenelle into physical therapy for an initial evaulation as soon as May 13, 2001. She was also very frank with us and said Jenelle's symptoms appear to be similar to Cerebral Palsy. That of course is just her opinion, and there are lots of tests to take before we make that diagnosis, only a neurologist can tell for sure. So we have a long way to go. She also stressed that we should try to push to get the neurological evaluation quicker!

We are waiting for our Neurological authorization, and an appointment with the Neurologist.