Today was a long day. It began by hauling three kids to the City because one had an appointment with a neurologist. Thankfully Cece was able to go play at a friends house while we spent quite a few hours at the hospital.
Elijah had an MRI a couple weeks ago, after being on the wait list for the better portion of two years. There was no rush because it really isn't being used to diagnose anything but simply to give us and a neurologist a better glimpse into the brain injury that caused his Cerebral Palsy. We went hoping for some answers, or at least some possibilities. We were also looking forward to having a visual representation of what we are dealing with everyday. I've heard that seeing a brain scan of someone with a brain injury or cerebral palsy helps a parent with compassion and understanding. I think with any of our kids understanding why they do what they do, or knowing there is a very real reason they struggle with some things helps equip us to continue to care for them with patience and empathy. I was hoping for a reminder as to why he struggles so much, as well as a glimpse into his former life. There is so much mystery involved when you adopt an older child that was abandoned in a foreign country. So many pieces of the puzzle gone. I was hoping maybe we'd be given another piece.
As it turns out he's a bit of an anomaly.
The neurologist seemed stumped and explained that he is very rare and not at all what she expected.
His MRI was the opposite of what we expected.
I expected to see something like this:
or even this.
(not Elijah's brain)
When the developing brain is injured it leaves gaps...basically holes where there should be brain.
Notice the black parts on the scan.
What I didn't expect to hear is that his brain looks totally normal. There is no visible injury caused by something like a prenatal stroke, lack of oxygen, birth trauma, illness etc.
His brain is also a normal size. That was hard to wrap our own brains around because his head measures so small. We assumed that this went together with some sort of brain malformation or injury.
(Happy Boy on a beach in Belize last month)
I don't have a picture of his actual brain. It looked like a normal healthy, complete, non damaged brain.
Which leaves us wondering what the heck is causing his spasticity, lack of muscle control, cognitive impairment, speech issues etc?
The neurologist is wondering the same thing. We cracked a few jokes about it all being an act and him duping all of us into believing he has CP, or the techs mixing up the MRI results.
So after meeting with the Doc. we went to the lab. They took 9 viles of blood and a container of urine. Poor guy was just about bled dry I think. Those viles are on their way to various cities and even the united states to be tested for rare genetic and metobolic disorders.
In some more rare cases CP can be caused by a genetic disorder, meaning something in the DNA went haywire. I'm not sure how that wouldn't still show up in an MRI though. It's a bit baffling.
The bigger concern with this is many rare genetic disorders are progressive and degenerative.
That is something we had never considered. With run of the mill CP there is an initial injury to the developing brian and then it remains virtually unchanged. Function can improve with surgeries, stretching and therapy but the brain damage doesn't get worse or better. People with CP can age harder though. Because the joints are twisted out of shape things like arthritis hit hard and early. We expected that someday his mobility would likely decrease because of something like arthritis but it never crossed our minds that he could have something totally different.
Never did we think that this could be a progressive, degenerative genetic disorder. It seems unlikely, but at the same time it's possible I guess.
The neurologist asked plenty of questions along that line, which kind of left us stumped.
It's hard not to start seeing things, or imagining things, when the suggestion is given to you that he could be gradually loosing physical and cognitive function....after we worked so hard to unlock so much non-utilized potential in both those areas.
Is he stuttering more? Is his walking worse? Why can't he correctly answer the question "how old are you?" or "what's your name?" when he could do it yesterday.
I'm going to resist watching like a hawk or being paranoid. And I may need to remind myself of that very regularly. There's nothing I can do to change it anyway. It is what it is...even if I don't know with that "it" is. Maybe I should go back and re-listen to my pastors sermon this Sunday about worrying and anxiety.
I have no idea when we'll get the results of the lab work back but the neurologist also ordered a spinal MRI, a spinal tap, and at some point maybe a CT scan (some things can show up on this that don't on an MRI). It sounds like quite a few more long days at the hospital.
I'm not sure how long those tests will take. I suspect since we are now looking at these tests in more of a diagnostic sense the wait should be fairly short.
If it's not one thing, it's another, around here. That's how we roll. Never a dull moment.
Our mystery boy became even more mysterious today.
He was such a trooper though. Nine viles of blood! And not a single solitary tear. The peeing in a cup thing threw him off though. It took four trips into the bathroom, lots of drinking water, and about an hour of waiting before we had success.
On a slightly different topic, but one that has to do with the same child and his brain, Elijah had a bad fall last week. He lost his balance at the top of the stairs and fell over backwards. He tumbled head over heals down the entire flight and landed on a hard basement floor. It was terrifying for him and the mom who saw it happen. Chills. It is the first time since he's been with us that he has fallen down stairs. He is so careful around stairs and goes down independently on his bum.
He didn't have any bruises or broken bones but he did have a concussion. It really threw him off for a couple days. It was kind of scary, but rest was all that we could do for him. Sure enough by Saturday he perked up, started eating again, regained his balance and has been mostly "normal" functioning level ever since. He tires a little more easily and complains "my head tired" every once in a while and will go and lay down on the couch for a bit. Poor guy. His noggin didn't need any more problems. I was glad we already had an appointment scheduled with a neurologist.
Thankyou to everyone who has loved our boy. Even from a distance.