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Friday, May 30, 2008

Dream Child

I definitely have a creationist view of the world, meaning that it is as you create it. And yes this also sits in contradiction with my also deeply held belief that we sign up for some things just to get the experience as soul. As within myself, such is the world, filled with startling contradictions coexisting comfortably side by side throughout eternity.

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:

Proactive,
Thorough,
Open minded,
Detail oriented,
Big picture sensitive,
Good listener,
Straight talker,
Positive attitude,
Interested,
Engaged,
Relationship builder,
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.

10 comments:

Lisa said...

Wonderful!

It is so great to experience a doctor that not only has the smarts, but treats Ellie (and your entire family) as complex people with comprehensive needs. I was with him the moment he got to Ellie's level and greated her and then carried your backpack.

Be proud of your outlier, she is an amazing kid on her own, but couldn't have shown all that she has to offer without you and Dave.

Bird said...

I am so glad that you guys have found a doctor that you trust. I am very fond of Charlie's nuerologist, but she is not the norm--she calls me back, not the nurse, and she talks to me like I'm smart and not like an idiot.

I think Ellie is an outlier because you had the faith in her that she needed. I am fully intending on Charlie being an outlier as well--no matter how crazy that may seem ot the rest of the world. Like you, I loved this baby before he got here and I will do everything i can to stimulate and engage him in the world. I feel very confident that he understands me and what is going on (as much as a one-year-old can).

You should come by sometime, Kathryn, Chaeli's getting very close to an independent sit and I put up some pictures recently.

Go ElliE!

Eithne said...

I don't think I've commented before but I do read regularly. It's great when you find a doctor that fits well and gets it. You are a great mom. I want to say something much more eloquent that than, but I can't right now. My son is around Ellie's age and has autism. I struggle with all of it all the time and I wish I could have as much peace and conviction as you.

Eithne

Kathryn said...

Lisa - definitely one of those moments where he had us at hello! Anyone who get's down on one knee to say hello to Ellie in a way that she can appreciate it, is great in my book! I am so proud of her and thanks. ;-)

Kathryn said...

Hi Bird, I do visit you every so often, of late I have been a bad bloggy friend and not surfing as much as before all this work poured in! But your comment got me thinking. Maybe outlier parents beget outlier children! Do more of the same and get said same, do something different and voila - different results! Charlie is lucky to have you! I am sure with such attention and positive regard he is going to do great!

Kathryn said...

Eithne - Peace and conviction are hard won sometimes. And my peace of mind definitely waivers from time to time. Also, honestly, along the way I have developed even deeper conviction about Ellie, her future, our life, our ability to handle it all. Dave actually really helped me with that because in that he never waivered - or at least outloud. I am usually the one, who late at night will whisper my worries and fears to him. They may be his fears too, but somehow getting them on the table allows me to examine them so that they no longer weigh on me. They come and go. Ellie herself is so loving and so determined I take a leaf out of her book. And in that sense she makes it easy.

I don't want to appear as an example of someone who deals with all of this perfectly even half the time. I think we are all just muddling through to some degree. I have my moments of clarity as I am sure you do too.

Lastly, I visited your blog and LOVE it! I think we have similar careers as well. If you ever want to meet, I live in Boston too!

Anonymous said...

Glad you found a doctor that you love,
You and Dave are both outliers, so no data would be much help as you guys each and together beat the odds and always do what's best and sometimes almost unimaginable to make this world a better place for your beautiful daughter.
Lots of Love,
Rick

medrecgal said...

An outlier...LOL! I could be described as such, too, given where I started. (Sometimes it's cool, sometimes it rots!) And your story about the doc will result in a new post on my own blog, since I have some interesting experience in a related realm. It's always helpful to find a good doc, because sometimes they're awfully hard to come by!

Kathryn said...

To Kassie, I may not have a messiah complex, but when it comes to my blog I am god and your comment has been deleted ;)

Eliza said...

Oh Kathryn it made me so happy for you to read that you found a GOOD pediatric neurologist! We are still looking and have similarly dismaying prior experience with the one we've seen for two of our three children (who suffer moderate and severe developmental delays but were both born at 35 weeks' gestation and never needed help beyond transitional oxygen)--that man gave up on my kids as surely as that one particular neuro you saw with Ellie did, and my severely-delayed kid is scored as such by childbrain.com's PDD assessment tool and was at the time not VERY verbal but IS expressive and was showing clearly abnormal but unmistakeable fear while he conducted his physical exam, during which he never so much as LOOKED at the child, often talking to ME about milestones while directing me to hold the child a certain way for reflex-testing, and the child was shrieking for "bwankie, bwankie!!!" which he kept SETTING JUST OUTSIDE EITHER OF OUR REACH which made me want to smack him...he as much as said he wouldn't expect much and could do as little or as much as I wanted beyond have an EEG to make sure there was nothing "treatable" going on.

If I hadn't been alone with my distraught child to dress and my paperwork to collect and belongings to gather I think I would have punched the man. I'm also glad I was, because if anyone had been with me it would have been my husband, and HE would have probably lunged at the man's throat (he's from NYC, you'll have to excuse him) after ushering me and the child out of the exam room.

I chose to pursue the max rather than the minimum and with PT, OT, and educational therapy from the OI dept, my almost-four-year-old is starting to get things like colors, shapes, the fact that objects have MORE THAN ONE QUALITY (i.e. blue AND a square, nevermind a blue square of PLAY-DOH), that potties really are what one OUGHT to use even if one refuses most of the time, that you don't snatch and throw books, you sit while someone reads them to you and don't rip the pages, that stairs CAN be climbed or descended and that one doesn't necessarily need to be carried up and down them (in fact the child knows that Mommy doesn't carry such big kids on stairs, although still loses the ability when Daddy can be had), and is starting to spontaneously greet people and bid them goodbye, and do clumsily GOOD things as well as clumsily EVIL things in general...piss on that neurologist, if you'll pardon me for saying so. He also flat-out refused to even consider letting our school-aged (moderately-delayed) child try Ritalin for severe ADHD because it would (according to him) make the fine and gross motor tics MUCH worse, but I had similar symptoms as a child (our problem IS, it turns out, genetic) and still do and stimulants don't affect ME that way. I've just gotten our pediatrician to address the issue (he is willing to give it a shot and understands I mean "trial SMALL dose with close observation," not "I want a three-month script" and that if there IS any increase in symptoms I will see a DIFFERENT pediatric neurologist about what that might mean.
Which is a very long-winded way of telling you that I understand in some tiny part what you go through in trying to convince a pediatric neurologist that a child with even more dramatic and obscure presentation than a PDD is in fact "in there" and (gasp!) even LISTENING so ix-nay on the etard-ray word, m'kay doc? Expressive language capability does not equal intelligence, and WHERE IS A BIG CARTOON MALLET I CAN WHACK YOU OVER THE HEAD WITH?
My husband has saved the text message I sent him from the waiting room ("hurry up, you missed it and I'm going to punch someone!") because I am a self-proclaimed pacifist and am always criticizing his temper; I can't blame him since it's the only time in eight years I've ever said such a thing, but I do wish he hadn't locked that message :)
If either of mine had needed ongoing treatment from a pediatric neurologist I might have been more motivated to seek a second opinion, but "just in case" isn't a strong enough motivation to add that to my list...I do remember what it was like finding a competent pediatric GI doc after having one who didn't care that my kid had stopped eating completely (but was thriving on a g-tube) and had actually suggested that the mysterious vomiting was psychological in nature (in a one-year-old child!) and best treated by squirting vinegar into the child's mouth as punishment, and I wanted to kiss the guy for making eye contact with my two-year-old and asking the child to comply with the exam rather than just GRABBING the kid...I wish there was a way to make all pediatric doctors undergo a once-a-year continuing ed requirement where they live inside the body of a sick small child for a week.