Mom, Stewart and I left my house at 10:30AM today in order to be at Carrie’s neurology appointment in West Chester, OH by 1:00PM. We arrived at 12:30PM. Carmen was already there with Carrie. A man behind the check-in desk greeted us and asked if he could help. I explained that we were there with Carrie. He told us her appointment was at 1:00. I said, “Thanks you.”

I sat in a chair with a table on the left side. Carmen was just on the other side. I said hello to her, but got no response. I exchanged baby talk with Carrie then asked Carmen if I could hold her. Again, no response. I leaned to my left and said, “Excuse me” quite loudly. Without looking at me, Carmen said, “What!?” I repeated my question. Also without looking at me she said, “No!” I then urged Stewart to ask if he could hold Carrie. Carmen said that Carrie was just fine where she was and maybe later.

We were called back a little before 1:00PM. Mom had been reluctant to go back to the exam room. I encouraged her to join us and she did. In the exam room Mom and Stewart sat in chairs across from the door. Carmen took the chair against the adjacent wall and moved it as close to the door as possible without being in the hallway. I leaned against the wall between Mom and Stewart.

After a moment in the room, Stewart reached for Carrie. She reached back. He stood up to take her from Carmen. No resistance. Shortly after that, Carmen began to warm up to us a little. She talked about how Carrie liked to tear paper (in response to Carrie grabbing a brochure). Mom asked what size Carrie wears now so she could buy a birthday outfit. It was all just small talk. A nurse/tech came to weigh Carrie and check her length. She is 20.5lbs and 28.75in.

Shortly after that, Dr. K came in. She greeted me by name, then called Stewart “Dad”, and introduced herself to Mom. She asked how Carrie had been doing since she last had seen her. I didn’t speak up, but wanted to say that none of us had seen her since August 10, 2004 (the last neurology appointment). Carmen filled in the blanks and talked about how Carrie is now “commando crawling”. She can sit up unassisted for a few minutes now. She hasn’t progressed to stage 2 or stage 3 foods. She must not like the texture. Dr. K asked about daycare. Carmen stated that she had to remove Carrie from daycare because she wasn’t eating while there. Dr. K asked about work. Carmen said she was on hiatus until she could secure appropriate childcare.

Dr. K then addressed the subject of the letter dated September 12, 2004. She said she wanted to make it clear that the letter was not intended to be used to deny anyone’s parental rights. Carmen interjected that she hadn’t done that at all. She claimed that we are falsely accusing her of that. Dr. K resumed her “speech”. She said that she wanted to be clear that she believes that a child benefits when both parents are as fully involved as possible. She analogized “remote areas of the country” as hiking on the Appalachian Trail where it would be difficult to get to a hospital. Carmen interjected again saying that she was worried about Stewart’s and Mom’s home locations. Dr. K said that her letter didn’t refer to Stewart’s hometown. She said that any hospital with an ER staff would be suitable in the unlikely event of an emergency. If necessary, the ER staff could transport Carrie to a children’s hospital. She said to avoid Urgent Treatment Centers.

Dr. K then began her exam of Carrie and reviewed recent lab tests. Carrie’s latest MRI (September 4, 2004) showed nothing negative. A spinal tap was done at the same time. It also showed nothing negative. The Prader-Willie test was negative. Rett Syndrome Test was negative. At this point, Carrie appears to be picking up new skills, with no clear reason for her developmental delay. She then asked if we had any questions. I had my list ready.

Q. What does “diagnosis by definition” of Cerebral Palsy really mean?
A. Not a progressive disease. Static. Mild.

Q. What symptoms does Carrie have that would lead to a diagnosis of Cerebral Palsy?
A. Abnormality of movements, muscle tone. She has extension tone.

Q. Is there any evidence that acid reflux would cause stiffening spells or any other alleged medical conditions?
A. Yes. Dr. Y the gastroenterologist would have more information about this.

Q. Has Carrie responded to the medication prescribed to treat acid reflux?
A. Yes.

Q. Do you have documentation from anyone other than Carrie's mother who has seen a stiffening spell from beginning to end?
A. No

Q. Have the stiffening spells been sever enough to warrant hospitalization?
A. No. Not ruled out.

Q. Are the stiffening spells reason to restrict travel to Kentucky for visitation with Father?
A. No. Carmen spoke up and said feeding is the main issue. Dr. K. says it’s not a big issue Carrie will most likely sleep during the ride.

Q. What other possible reasons would cause stiffening spells and/or any other alleged conditions Carrie may have?
A. Most others ruled out. Big questions is why is she delayed. MRI, EEG & Metabolic tests have ruled out other causes. Perhaps we should look at a genetics test.

Q. Have any of her alleged medical conditions inhibited her growth in any way?
A. Not that we know of.

Q. Is Carrie gaining weight appropriately for her age?
A. She is in the 50th percentile.

Q. Is Carrie in danger of needing a feeding tube?
A. No Risk. No problems with swallowing.

General notes of other conversation:
Carrie’s MRI results show no negative evidence other than in March her head was smaller than normal.

Carrie’s mother stated at one point in April 2004 that Carrie would have a shortened life expectancy. Dr. K. said there is no reason to believe that.

When I asked the question about the feeding tube and life expectancy, Carrie’s mom interjected and claimed that she had never said those things to me. I ignored her and asked the question again to Dr. K.

After Dr. K. did an exam of Carrie. She said Carrie seems to be progressing nicely, even though she still shows obvious signs of developmental delay. She expressed concern about the fact that there is no apparent reason for the delay. Given that all tests so far prove to be negative, she offered to do a genetics test. Carrie’s mom indicated that she didn’t want to put Carrie through any more tests. Here’s my theory: Carmen is suppressing Carrie’s development. All tests so far have proven nothing. The genetics test is the last one to do. If it also proves to be negative, then perhaps the professionals will begin to more strongly suspect that Carmen is doing something. She doesn’t want to have the test because she will have no more cards to play. Stewart indicated that he wants to do the genetics test. He will bring it up at her next appointment.

Dr. K. said that unless we had anymore questions she was finished and that the nurse would bring in discharge paperwork. I told her that I was honored to have her as Carrie’s doctor, especially since she had treated Carmen’s twin sister. She looked puzzled. Dr. K said that she didn’t know anything about Carmen’s sister. Carmen blurted out that she never said Dr. K treated her sister. I reminded her of our conversation at the Chinese restaurant. She continued to deny it. The moment passed.

Dr. K offered to walk Carmen to the waiting room. She then turned to Stewart, Mom and me and offered to let us wait in the exam room. She said that Nurse Shirley would come in and talk to us. Mom seemed disappointed that Carrie had left the room. I encouraged her to go to the waiting room and see if she could hold Carrie one more time before we all left. She went.

Nurse Shirley came in and asked what we know about Carrie’s removal from daycare. We told her that we knew nothing, not even where daycare is. Shirley then told us that she believed that circumstances surrounding Carrie’s removal from daycare were suspicious. She gave us the name of the organization and the phone number. She then strongly suggested that we call them.

At this point, I told Shirley that I was suspicious of the breath-holding/stiffening spell that occurred at my house in July. I told her that it honestly looked like Carrie had been intentionally smothered.

Mom told Stewart and me in the car that Carmen yelled at her in the waiting room and told her to leave Carrie alone. She was understandably upset.

We stopped at a gas station before leaving West Chester. I called Abilities First and asked to speak with the director. The woman who answered the phone told me she wasn’t available. I asked what her name was so I could call her later and ask for her by name. The woman wanted to know why I wanted to know her name. I briefly explained the situation. She offered to transfer me to her voicemail. I left a message asking her to call Stewart.

The director of Abilities First (Jan Sutcliffe-Brown) called Stewart back before we got to Cincinnati. He told her why he was calling and asked about Carrie’s participation in daycare. She told Stewart that she wouldn’t talk to him until he presented documentation of his right to know. He asked for her fax number. We stopped in Covington at an office supply store and faxed his divorce decree.

On our way home, Jan called to say she received the papers and made an appointment to talk with Stewart on the phone tomorrow.