All of this ruminating has been sparked by a recent visit to our new neurologist. I hadn't intended on finding a new neurologist for Ellie, because we have one, had one, kind of. I was not so happy with him. But as life would have it - way, way back here when we lost our first Boston neurologist, Dr. Janet Soul, whom we loved, I had made an appointment with Dr. Michael Rivkin. Because it took a year to get the appointment, I double downed and also met with the other neurologist Dr. Soul had recommended but whom turned out to be so nonplussed by us and so flip... ugh don't get me started, you can read about the dog and pony show dada had to put on to get him to even listen here, though that meeting resulted in no conclusions or actions. After all this time, however, I completely forgot about the other appointment.
Last week we got a reminder call to meet with Dr. Rivkin. Our long ago made appointment was for this Tuesday at 11am. I almost didn't go because this week has been a rough and tumble stressor of a week. Here's why - I'll just list the crap we all had to contend with:
- Ellie's IEP was Wednesday
- Ellie's 3 Year Re-eval was also Wednesday
- Ellie had to get Botox in her lower legs Thursday morning and of course that takes all day (more on that in another post)
- Ellie and I had to meet with our case worker from Mass Health for reevaluation for the nursing hours we get (nursing hours which save us from complete insanity as well as being quite handy when Ellie is sick or having surgery's or procedures).
- Our water heater sprang a leak...
Now on the other side of it, nursing hours intact, the best IEP ever, and Ellie knocking the ball off the charts in her evaluation testing (yes am pretty proud of her) I have time to take a breath and ponder it all (except the water heater - I can't ponder that at all - I will implode if I do - I have handed that off to Dave, hubby of the year).
You can see why I almost cancelled the meeting. But I took Ellie anyway, pulled her out of classes and got us down to Boston Children's. When I met Dr. Rivkin it was definitely one of those watershed moments when I breathed a great sigh of relief that I hadn't blown off the appointment. Like one walking on the edge of a cliff and catching themselves from falling over the edge at the last moment. I can only describe the events so you know why this was a very different meeting for us than our last two visits to the other neurologist.
Ellie and I are in the waiting room having only been 4 minutes late which is saying something and I hear her name called. (This was after they weighed her and checked her height. By the way she has grown 4 inches over the last year and gained 10 pounds! Go Ellie!).
I call back, "Yep, we're here, just a sec!" because I have to extract Ellie from my lap, which is no easy thing to get her and all her toys back into her stroller. As I am putting her in I hear someone nearby say, "Hi, I'm Dr. Rivkin!" I get Ellie in and take his outstretched hand. He's smiling a big smile like we have made his day by coming to our appointment. I shake his hand and he has a good strong, but not too strong as to bruise your hand, shake. The kind of handshake that always means sincerity to me. He is wearing a funky bow tie which is also a good sign of a nonconformist free thinker type. Better still he bends right down to get at Ellie's eye level, and says, "Hello there! Nice to meet you!" And the big smile again. Then he offers to carry Ellie's nap sac which I let him do.
We go in his office and he very thoroughly, taking notes, gets our history, asks a ton of questions that range from birth to my history to Ellie's current abilities and medical status. He listens to me when I tell him she can read , understand sign language, and understand all of what we say if she can hear us. He listens and believes me. There is no eye rolling just direct gaze and appropriate questions. He has opinions too because he has read her records (before we turned up).
He was really clear that he did not think we should take Ellie off her seizure meds. He had read her past EEG reports and told us that her EEG is really abnormal, not just abnormal for someone with type of brain injury she has, but really abnormal. So we stay on the meds a bit longer as much as I hate that. Her last seizure lasted an hour and seemed like it would never stop and is something we can't let happen again as you can see here.
He asked me why I was there, since he didn't think Ellie needed two neurologists. I told him that she needed one good one and we were still keeping our options open since leaving Dr. Soul. He said, "Fair enough."
The great thing was that I didn't need to bring someone with me who has a, you know, the appendage that makes a man a man. He listened to me without any pretense or bias. When I told him that within two weeks of starting the seizure meds Ellie quit eating full stop, he said, "Well, that is very concerning." YES! IT IS! Finally someone with a MD in their title who is taking me seriously!!!
He was also proactive. He noted that Ellie hadn't had an EEG in 2 years and that he wanted her to have one straight away so we can revisit the med question and see if we can't get her eating again. He inquired if she had a trunk orthosis and hippo therapy. He gave me an inside line to call once the EEG results are in so we can discuss meds. He wants to see her again in 6 months (not a year like the other guy). He even introduced us to his team so we would know who to call for what. 3/4 way through the appointment I had told him we definitely wanted to switch to him. I didn't tell him all the reasons why but they are below. I wanted him as Ellie's neurologist because he is:
Big picture sensitive,
Down to earth, (versus the, I think I am a god realm and know everything, attitude many doctors seem to carefully cultivate)
Knows his stuff medically speaking
These are the things that differentiate between a good doctor and a great one.
He was gracious and said the other guy was really smart. And I said, "You are all really smart but we need someone who is more than smart." I think he was kind of chuffed by that but trying not to show it. But he agreed to be Ellie's neurologist.
Toward the end of our visit, I asked him, "Considering all that Ellie can do, the reading, her language acquisition, etc. have you seen other kids with similar issues like her?" I was really hoping he would say, yes, many of the kids with traumatic brain injury and PVL go on to do quite well, or something like that. But instead he said, "No, she is definitely and outlier."
An outlier is a statistical term for a data point that is at either end of a bell curve or when looking at a scatter plot a distant dot far from the other data points. Ellie is such an outlier.
I am glad that she is doing so well considering that. I also felt sad because that means she is rare, which means there is not allot of data on what to expect. There are not a great many books to take pointers from on what to do to help her (though the Doman stuff and Linda Scotson have been true role models). There is no beaten path to go down to help her heal.
Then again, with my creationist view of the world, I wonder if Dave and I didn't dream her up. And I mean that in this sense, from the second she was conceived we loved her and were thrilled by her presence in our life. This great excitement and love was not dampened at all by what happened, no just the opposite. It was strengthened and grew fierce. It informed all we do and did from day one. It fueled and solidified our hope, our partnership to bring the world to Ellie, to see her beyond her ravaged brain, to find her in the catacombs of all that was destroyed and pull her to us. I really feel sometimes that we did pull her out of it all. We have been constant in our attempts to work with her and keep her brain active. We are still pulling her out into the world though we have allot more help in that she goes to a school that meets our standards for miracle making.
In all of this I think Ellie is our dream child. I think there is an argument to ere on the side of hope and intelligence and love. We never held back from her or this challenge, instead we dove in head first without looking back or fearing the depths. I have but to think that in that sort of environment Ellie could do no other than build her neurological pathways that were not there yet (because she was born before the 28 week gestational marker)and others that were destroyed by the anoxic event and forge new ways of neurological function so that she could come out and play with us. She is OUR outlier, our dream child and we will just go on bushwhacking through the wilderness that is our life.