(No! We hadn't noticed. Perhaps we should take him to a doctor!)
He then told us that he would like to have him tested for a variety of ailments; and he had a sneaking suspicion that our son perhaps had something called Menkes Syndrome. He followed this up with, (and I am NOT kidding), "Now don't go home and look that up!" (Oh what a silly concern! That parents would want to know something about a fatal illness that a neurologist 'suspects' their child may have!)
And then he ordered some blood tests, scheduled an MRI of Elijah's brain (no small appointment - another full day at the hospital, sedation, stress, then more waiting), and sent us on our way. Hopefully to go home and do what we usually did - not look things up.
A few days later, we went back for the MRI. It was everything we had expected. It was not the first. We were told that the neurologist and radiologist would go over the results and we would get a call within the week. Meanwhile, we went to see another doctor over in Genetics. We had also waited months for this appointment. On the day of that appointment, I remember that we were so stressed, we could barely answer the med student's questions about Elijah. I finally just explained to her that we were incredibly stressed after this week of testing and was there any way possible that she could maybe find out if our son had Menkes (since we had not yet received a return call from neurology about the initial bloodwork) so we would know if we should even bother answering her questions or not? She was uncharacteristically nice and immediately got up and went to go check on the computer, which was apparently accessible to any doctor within the hospital. She came back with good news: Elijah did not have Menkes Syndrome. And she was very sorry that nobody had called us with the results that had come in days ago.
After dh and I hugged each other and Elijah, we were able to continue with Genetics, though they had no answers for us or our mystery baby. They commented that he was 'quite small'.
After the MRI, we anxiously awaited that phone call with the results. We knew that we would have a follow-up appointment with the neurologist in January, but we were hoping for some sort of results after the MRI was read. We were also getting ready to take our family on a much needed vacation in Kauai, and were hoping to have some 'closure' on the stress (I don't know what we were thinking!) before we left. I had been particularly overwhelmed with the overscheduling of doctors appointments, which was turning out to be a lot of output for no information in return, and in our personal lives I was sick and tired of hearing peoples' shocked reactions when I answered the question of how old was my baby. Even the doctors seemed to be overwhelmingly insensitive when greeting our family - can you imagine what it does to a baby and his two year old sister to constantly hear, "WOW! He is so small! What's wrong with him?"
Finally, the call from the nurse in the pediatric neurology office came. I answered the phone as I was packing diapers and bathing suits. She said, "We have the results from the MRI of Elijah's brain. The results are abnormal, and the doctor will explain this to you when he sees you in January."
My brain did a quick review:
It was November.
My child's brain was abnormal.
How? I did not know.
But I would find out in January.
Then I responded.
"You just told me that my son's brain is abnormal, and that you can't tell me how or why until I come back in January?"
"Yes, the brain is abnormal (note: 'the' brain. not 'his' brain). But the results are inconclusive. There is no diagnosis. So the doctor will explain it all to you at your follow-up appointment."
"Yes, well you know, that just isn't going to work for me. You need to have Dr. Asshat call me today. You don't tell a mother something like that and then tell them to wait until their next appointment!"
"Look, this is pediatric neurology. Any diagnosis is bad. Your child does not have a diagnosis. He does not have a brain tumor. I will ask Dr. Asshat to call you, but you are going to have to wait until your next appointment."
"YOU look, lady. If YOU are the person who DOES call those parents of the kids that have brain tumors, then your office has bigger problems than making parents wait. And I AM A MOTHER. I love my son and I just put him through a LOT of tests, and I am NOT going to wait two months to hear the results. Do you have any idea how long two months is to an eight month old baby? I suggest you have Dr. Asshat call me today by 6pm, or I am going to call you every single day until he does."
Did I mention before that nurses don't really like me?
The doctor (note the use of the word 'the' doctor instead of 'Dr. Asshat'- the way I de-personalized him there!) did call me back by 6pm that day. The results were inconclusive. Yet another doctor without a clue what was going on with our baby. His brain was not developing normally. He was found to have a small corpus callossum. And microcephaly. (the microcephaly Dx was later overruled by another doctor who felt that, since his head and brain were proportionally correct for the rest of his size (not age), he could not have microcephaly.)
"What could this mean for him?" I asked.
"There is no way of knowing," was the answer.
"Did this mean that he could die young?"
"There is no way of knowing. But no reason to believe so." he quickly added.
Isn't there anything that he could tell us with this knowledge of his brain development?
The simple answer given to me that day was, "No."
Months later, through my own research, I discovered that nearly all children with growth disorders have a small or abnormal corpus callossum, as this is where the pituitary is located. It was this discovery that finally got us a referral to Endocrinology.
In January, we went to our follow-up appointment with Dr. Asshat. We waited in his narrow office for a long time. Finally, he appeared, with a harried looking intern scurrying behind him. He took one look at Elijah, exclaimed, "Wow! Ten months, really? He's so small! I wonder if we should do an MRI on him?"
I nearly choked.
Then I glared at him. I said, "That is why we are here. You already did. Over two months ago. We are here for the results. I am sure it mentions that in the chart you are holding."
He glared at his assistant.
He looked embarrassed, mumbled something at us, and pushed his assistant out the door in front of him as they hurriedly exited.
We stared at each other in disbelief as we waited again in the narrow office.
After a few minutes, the intern came in to show us the MRI results. She showed us a MRI of a normal brain and then showed us the MRI of our son's brain, implying that, once we saw the difference, it would all be crystal clear to us. She pointed out the differences. She said that there was no diagnosis they could make from this MRI, other than the likely label of MR, as a result of the 'microcephaly'. What is MR? If you are a parent and you have never heard this, then aren't you lucky? It stands for mental retardation.
After she was done 'explaining' the MRI, The Doctor came back in and asked if we had any questions. I asked him all the same questions I had asked him on the phone two months before. His responses were the same. I asked him if we should come back again in a few months.
His hand was already on the doorknob when he turned around to face us, gave a royal wave with his hand, and replied with mock flourish, "My work here is done!"
That was fine with me, as I wanted to return there almost as much as I wanted to pluck my fingernails out. Also, we had already decided to stop allowing the doctors and people surrounding us to only focus on what Elijah could not do. We were well aware of what he could not do. But how about one goddamned person in his life focusing on what he could do? Well, we took on that role.
After the terrible phone call, before we took our beautiful children to Kauai, we decided that we had had enough. We were going to enjoy every aspect of our children, every special thing that made each of them different. And no more listening to doctors who had nothing to say.
The night before we got on the plane, I said to dh, "We are going on vacation. It's his vacation too, and I think we all need a break from hearing 'Ohmygod he's so SMALL!'. He is the size of a three month old, so we will lie. We tell people that he is three months old."
It was agreed.
When we boarded the plane, the flight attendant took one look at the blue-eyed cherub in my arms, and proffered the typical greeting, "Oh...how old is he?"
"Three months!" I answered quickly.
"Ooooohhhhhhh....he is adorable! What a precious baby! Look at those cheeks! Oh Lynn- come and look at this baby!"
That was the first time in his eight months of life that a stranger had greeted him that way. My eyes met with dh's, and we both got a bit watery.
What had we done? We had already allowed the world to shit on him because we weren't jaded enough to be dishonest.
We never were honest about his age again. And for the rest of his life, in those situations, he got what he had missed for the first eight months of his life: all that extra lovin.
added note: It should be mentioned that I sent a scathing letter about this doctor which may or may not have intiated the survey that was then conducted among his patients. He is no longer working there.