It's 140 am, and I'm sitting at my keyboard typing, because Brianna is having one of her fortunately now rare difficult nights. She has been difficult to settle tonight, not able to stop moving, and waking as soon as laid down once she is awake. After three attempts to lay her in her crib, she is sitting on the couch, watching a little baby Einstein, "talking" to herself and hopefully "resetting" her sleep switch.
We had a very encouraging doctor's appointment with her today. I've been struggling over the last few months, trying to figure out how to get more resources for her. I get very frustrated when I see children with milder forms of Autism get daily therapies, and Brianna only gets 2-3 physical therapy and 2 occupational therapies A MONTH. I don't understand how a child with as severe a disability as she has has such limited services, while children her age who are running and jumping get therapy every day. I understand that they are very different disorders, and that they have unique needs, but nonetheless, it frustrates me.
On top of that, I just felt like none of her doctors cared anymore to try to figure out how to help her. I felt like she had kind of been written off, and everyone had taken a casual "let's wait and see" kind of mentality. When we went and saw the head developmental pediatritian, and I expressed my concern that I felt like her resources were limited because no one had a diagnosis for her, and asked about cerebral palsy, he brushed it off, saying that CP was an overused diagnosis, and that she didn't show spastic (stiff) muscles and her MRI was clear, so that he didn't think she had CP. He said that she would end up having a diagnosis, and when she turned three she'd likely be labeled mentally retarded or as having a developmental disability, which would get her the resources she needed through the system. At the time I was a little floored, but the longer I thought about it, I just got ANGRY. So we were just supposed to sit back and wait for the next year and a half, and just accept that she was probably just mentally retarded and that's that?! Because you look at this chart and she's x percentage behind on her abilities, and there's no attempt to look into her unique characteristics, just where she stands on some evaluation chart? Pardon my language, and I'm someone who never swears, but that is just BULLSHIT. And for a developmental pediatrician not to understand that cerebral palsy has different presentations, and not every person with cerebral palsy - by the CLINICAL definition, has spastic muscle tone, that's just ridiculous.
So I walked into the appointment this morning, my mother at my side, ready to do battle. I was worried, because I really didn't know what I would do if yet another doctor shrugged off my concerns. But I had my list of frustrations and concerns at the ready.
From the beginning, my heart was soothed. The doctor came to us in the waiting room, and as we walked to his office, he observed Brianna sitting in her stroller, soaking in the way that she sat and moved. As we sat in his office, he immediately began talking to us about our concerns. We talked about her feeding tube and her growth. He acknowledged my frustrations with my inability to get people to call me back, having to repeat my attempts to talk to people, rather then anyone returning my phone calls, and he apologized for my experience.
Then we began to talk about Brianna's personal characteristics. Specifically, her movements. First, he acknowleged my intelligence and that I seemed to understand a great deal about what we were talking about. And rather than patronize me with stupid analogies (one thing I've found is that doctors love to use analogies to explain scientific concepts, even after I tell them that I understand the terminology and they don't need to "simplify" it for me, they don't seem to think that a simple stay-at-home mother could possibly understand what they're talking about, without comparing it to some everyday object or concept), he just accepted when I told him that I understood the term, and he talked to me like an intelligent person.
We talked about Brianna's increasing uncontrolled movements. He asked me if I'd describe them as "purposeless" and I agreed. The more excited she gets - the less she has control over her body. Her head moves from side to side, her eyes squint, her arms flail, or she brings them in, "hugging" herself. She is rather still. Yet she has relaxed moments where she is very much in control of what she is doing, and is very careful and precise in her movements. It's something I've been trying to explain to doctors for months, and they haven't seemed to see what I was talking about. We also talked about the possiblity of seizures, because he said that he thought that she was periodically "checking out" even while he was observing her. She would go from very intent on observing, to not seeming to engage with her surroundings.
When I told him that her therapists believe that she might have cerebral palsy, he agreed that it seemed a likely possibility. And then HE brought up athetoid cerebral palsy, and knew exactly what I was talking about - and agreed that it appeared she had that form. He said that he was going to give her a preliminary label of CP, because he knew it would help other doctors understand what unique treatments she needed (such as her GI doctor) and not just look at her specific symptom without taking in the bigger picture. He understood that people were more willing to open up resources with giving her a diagnosis - without my having to talk about it.
We continued to discuss several things, and he immediately scheduled our next appointment. He said that he was going to put in several referrals, and make sure that she was scheduled for an EEG, and a barium swallow study (which was supposed to have been ordered TWO MONTHS ago). And he said he wanted her feeds to increase, because of her weight gain, and he would call in a couple days to see how she was handling it. And that if we weren't called about the referrals within a week, that we were to call him.
FINALLY, I felt like someone was taking us, taking HER seriously. He understood the sense of urgency, and that no one was taking care of coordinating her care, and he took responsibility for it. I walked out of the appointment with a huge sense of relief.
And that isn't it. About four hours later he called. He said that he had been pouring over her records, and that he was surprised at the number of doctors she had seen. He talked about things that were in her chart from the weeks after she was born - like when I called the on-call doctor over the fact that she hadn't pooped for almost 2 weeks after she left the hospital - and they told me not to be concerned (they should've been concerned). He was concerned about some different elevated labs in her chart - repeated labs that were elevated (lactase, pyruvate, and calcium), that no one knew what to do with. He emailed an endocronologist that he knew (he described him as a "super-nerd" and that when he was stumped, he went on to talk to the super-nerds). Rather than just shrugging it off as something that he didn't know why it was wrong, so it must not be important, he tried to find some answers.
He told me that he saw that we were getting to the point of "oh well". Not US, but that the doctors were just shrugging their shoulders. "oh well, she's not growing" "oh well, these are abnormal, but I don't know why" "oh well, she's already seen me, but I didn't see anything I could do"
Oh well.
Oh well.
Oh well.
She's just a child, who cares if we can't figure out what's wrong. We know how to deal with child x who has autism, let's just take care of the things we understand. She should just wait and see what happens, let's not refer her off to someone or someplace that might help.
But finally, a doctor who cares. Someone who wants to help her. Someone who wants to help us to get her to reach her fullest potential. Someone who accepts that he doesn't know everything, and that there are people out there who might know something that he doesn't, so not to just let it rest.
Patricia pointing out the turtle to the kids
Liam chilling
The crew
Looking at the turtle
Garin and Joseph
You can see the turtle just under the water, behind the wave.
Me and my Lima-bean
Brianna hanging out on the beach
My beach boy
Happy kiddos
Friends enjoying the sun and sand
Beautiful Gina sporting some goggles
Action Garin
Fish in the reef
Garin and Colin playing in the sand
Laurianne, Colin, Garin, Brianna, Liam and I after a long morning at the beach!
Ready for the ride home (minus being buckled in, of course!)
Brianna is sacked out before we even started the car!
Brianna telling a story
Liam enjoying the sun
Cheeky grin from Brianna
Our friends' son, Jacob is tuckered out from a long morning in the sun
Jacob's sister, Jenni, boogie-boarding
Friend Helena and her beautiful children: Gina and Joseph
Garin and his buddy, Colin playing in the waves:
Helena testing the water with Gina and Joseph
Brianna's saying hello from the shade of the tent
Our spread
Jason playing with the kids in the sand
Garin and Colin playing in the water
Brianna and Liam hanging out in the shade
Jason and Lauren checking out the waves
Jason (a different one!) in the water with Sierra, Kyle, and Jenni
Tomo and Koko
Hello, Brianna!
Helping Brianna enjoy the beach
