Wordless Wednesday: A star-studded photo shoot

Their bibs say their name and "Star of Mommy's Blog."

"Ok, mom, please put away the camera."

An anticlimax to #thepatientexperience ...thank goodness!

So, it turned out that today's appointment went fairly smoothly. There were no big surprises, the doctors and therapists saw us in a timely fashion and we were out the door by 11 a.m., a full three hours earlier than the scheduler told me to anticipate. (Part of that was that the Occupational Therapist was sick and didn't do her evaluation, but still, pretty good.)

Malachi tries to fend off Jaden's attempts to steal his cheerios.

My Twitter project didn't work out as I expected because there weren't large blocks of time in between specialists as before (which is a good thing!) and my cell had very spotty service in the clinic. You can read my full stream here or check out the ones I remembered to tag at #thepatientexperience.

The exchanges with the specialists were amiable and I answered their questions to the best of my ability. It still took me asking them to explain the findings of their evaluation for them to do so, but I was expecting that, so I wasn't angry about it like the last few times.

The speech-language pathologist said Malachi was on-track in his babbling, but that his play and comprehension seemed a little more like a 6 or 9 month old's. We both felt that a big part of this delay is his inability to show us what he can do. (Remember how I said, It's all connected?) For example, I know that Jaden can understand his name and simple commands because when he wanders over to something he's not supposed to touch I say: "Jaden?" He looks at me. "Don't touch." He looks dejected and inches away. Malachi isn't really capable of touching anything he's not supposed to, so I never need to give him a command or get his attention with his name. Of course, I do say pleasant things like "Hi, Malachi!" And he looks at me. And: "Want this?" and he grabs for it. But it's not as clear-cut as my interactions with Jaden. It's possible that he is simply looking at me when I call his name because he looks at me when I say just about anything. It's possible that he's grabbing for the toy because my body language and facial expressions indicate that's what he should do.

The thing I want more than anything is for Malachi to be able to speak normally. I've heard that adults with CP are most frustrated with their inability to speak clearly and/or perform fine motor functions, such as buttoning buttons. But ever since he was diagnosed with a swallowing disorder I've realized that it's extremely likely that he will have trouble speaking. So I was happy to hear the SLP's diagnosis and when I asked her if she thought the feeding problems will interfere with speech she essentially said: "Not yet." Which is better than yes. But not much.

We had a brief break, just enough time to tweet a bit and hand Malachi a Baby Mum-Mum to snack on, when the developmental pediatrician came in. He did some now-familiar tests, such as feeling the tightness of his muscles, checking his reflexes, standing him up, etc. Just like last time, he finished his evaluation with little to no explanation and asked if I had any questions. While last time I felt enraged, this time I was simply bemused.

I asked if he could explain his tests in more detail and what specifically he found. He said he was even more certain than last time that Malachi has non-spastic or extrapyramidal cerebral palsy and that this is "reassuring." He said that his ankles and hips look fine; that his legs have some tightness but that they can be stretched, which is good; that his head control is better, his hands are more open and functional and he stands better on his feet than before. He said things are "moving in a good direction."

These are all things we already knew.

Whenever I asked a question about treatment — such as courses of therapy or the need for special shoes — he said little, mostly preferring to defer to our physical therapist.

I told him a little about the Anat Baniel Method we're doing, which he recognized as Feldenkrais. He was politely interested but certainly didn't seem like he would check it out and maybe tell his other patients about it. I mentioned that we are doing conventional physical therapy only about three to four time per month now. He didn't seem concerned about that or mention research in the last few years that says that intensive therapy is vastly more effective in brain injury victims.

Overall the take-away advice from both the SLP and the developmental pediatrician was: "Keep doing what you're doing."

For some reason, they don't seem to notice or mind that almost nothing we're doing has come from them, the "experts."

"Keep doing what you're doing."

Yep. We will.

Malachi's nap attack after the appointment. 

The Patient Experience: Liveblogging a neurodevelopmental evaluation

This Thursday is a day I'm very much dreading.

This Thursday is the third time we will be going back to the (very well-known and well-regarded) hospital for a neurodevelopmental evaluation for Malachi. It is where they will poke and prod him and detail what's wrong with him — but for all that somehow not be able to tell us much of anything about his condition and what it will mean into the future.

The first two such appointments we had there were, in my opinion, absolute disasters. The first was on Sept. 22, a date that is etched into my memory. We were told of Malachi's brain injury in early July and given the Sept. 22 appointment for the neurodevelopmental clinic. For the nearly three intervening months I grieved — hard — and did little to no research on cerebral palsy or treatment options. I gave myself until that appointment to process it. Then, I would finally hear from our team of world-class doctors and therapists some sort of action plan for what we would do about this major and well-known condition.

Nope. Not even a little bit.

The kind but bizarrely unintelligible developmental pediatrician told us next to nothing about what we should expect — except that we couldn't expect anything. He did a series of tests on Malachi but told us nothing about what they were and what they meant. Much, much worse, in my opinion, is that he had a "wait and see" attitude and assigned us physical therapy ONCE A MONTH starting in late October. Are you kidding me??? You get more physical therapy than that for a sprained ankle! Not to mention brain scientists, teachers, and, well, EVERYBODY, knows that if you want to learn something —walking, reading, anything — you need to practice as much as possible!

It was then I realized that I had wasted priceless, irreplaceable time on a medical system that was calibrated to be extremely inefficient at helping a baby recover from a brain injury. Babies — especially babies, whose brains have the unique ability to rewire around damage — need help as soon as possible. Not four months after the brain damage is detected.

I struck out on my own and explored and tried as many alternative therapies as we could, but I felt ill-equipped and betrayed by a medical system that did little more than shove me through an obstacle course.

We changed developmental pediatricians, but our next appointment in March was probably worse. Not to mention, when I tried to make a follow-up appointment for four months later as the doctor recommended, the earliest option was late-August. Two extra months is a LIFETIME in a baby's development.

So, that brings us to this Thursday. I really, really don't want to go for several reasons, but I'm going to, because it's what I do.

Because these specialists are much too busy to see patients in a logical fashion, the appointment is SIX hours long, most of which will be spent waiting. Malachi — like all babies his age — sleeps for a couple hours in the middle of the day. I will not be at all surprised if his noon nap time is when they decide to perform their most strenuous tests and remark that he is easily irritable and stiff. (Woah.)

Also, I will be alone. No one, not even my husband, is available to come with me, although thankfully Jaden can stay with his grandpa so I won't have to wrestle him, too.

That's when I thought of this blog and you guys, my awesome readers, who have made my life so much better since I started blogging. I realized, "I don't have to do this alone."

I've decided to live-tweet the appointment with the hashtag #thepatientexperience. I want everyone to know how frustrating, demoralizing, disempowering and just plain backwards the conventional American medical system has become when it comes to caring for unique needs of its patients. The appointments patients go to are far more often suited to the comfort of the medical staff than to the health and wellbeing of the patient.... the latter being, if I'm not mistaken, THE ENTIRE POINT OF THE MEDICAL SYSTEM.

My hope is that this will turn what is sure to be a stressful and depressing day into a learning experience for everyone, most of all medical professionals who no doubt got into their career to help people, not stress them out and hinder their healing process. Perhaps if they can see it from the patient's perspective they can work to change their clinics and workflows to be more patient-friendly.

Follow me on Twitter to catch the action. Also, feel free to use #thepatientexperience to document your own appointments and the ironic, counter-intuitive things our "healers" make us do.

I really believe that change can come through our words.

P.S. If you don't have Twitter, that's OK. I'll post a recap here that evening or as soon as I can.

Would I have terminated my son?

My initial visceral reaction to the recent NYTimes piece about the growing number of women who elect to reduce their twin pregnancies to a singleton was of disgust. How could you possibly choose which one? Which of my sons would I have gone without? How could I do that to his brother? How could I rob them of their twinhood? What sort of selfish person would play God like that?

Even knowing what I know now — that my life would be completely turned upside down and all my hopes and dreams for my career and what my family would look like would be shattered — I would never go back in time to terminate an "extra" baby.

In fact, I'll go so far as to say I think the people who would are completely unprepared for life as a parent — in which you have significantly less control over your life and certainly can't expect to decide who the person you nurture grows up to be.

But would I have done it back at the beginning of my pregnancy? If I somehow could have known then that one baby would have brain damage?

Yes. Absolutely. In fact, it wouldn't even have to have been that early.

When we were told at 20 weeks that we were having twins and that preterm birth was very likely, we asked the high-risk obstetrician (who was forced upon us) what sort of chances we would have of normal babies if we gave birth early. He told us that at 28-week fetuses join the "90/90 club." That is, 90 percent of babies survive and 90 percent of those who survive are normal.

That became our target date. Two months of hormone-sodden stress all focused on getting passed 28 weeks. Because, you see, after a lot of thought and discussion, my husband and I agreed that if they came before 28 weeks we would have signed their DNRs — essentially an out-of-body abortion.

We didn't want a special needs child. Let alone two. Just because medical science has advanced to keep micro-preemies alive doesn't mean we should have to shoulder the burden of them for the rest of our lives.

So it shouldn't have come as a surprise when the day before I hit 28 weeks the stress built to a fever pitch and I was forced to admit myself into the hospital with contractions and a dilated cervix. Thankfully, an infusion of epsom salts (magnesium sulfate) kept the contractions at bay and I stayed there for two weeks feeling bored and confident in my victory lap. (Ha.)

So if Malachi "had" to have a disability, I'm eternally grateful that we made it passed 28 weeks so I wouldn't have had to make a decision that would have scarred me for life and robbed me of the simply AMAZING person he is — cerebral palsy or no cerebral palsy. Of course, it would have been a major mistake to have terminated him and/or his brother. They are AWESOME.

But then my husband asked me a question that left me speechless.

If we got pregnant again — NOW — with twins, or even just one, what would we do?

Considering I'm terrified of having any more babies, I would really have to think about that one.

Pregnancy is such a weird time because everything feels hugely life-altering and yet so undefined. The baby doesn't seem real at all. It's hard to reconcile the idea that the thing inside of you will one day be a person. And not just any person, a person you will love more than you love yourself. A person who will amaze and inspire you. (And yes, a person who will harass and torment you.)

At what point is that fetus real? I don't know. I know it's a lot earlier than I used to think. But I still don't think I'm sure it starts at conception. Maybe other moms out there have had life-changing interactions with their unborn children and would disagree with me. I wouldn't really know. Because of the uncertainty and fear of preterm labor — and what we might have to do because of it — I rarely interacted with my babies in utero. I didn't stop calling them Baby A and Baby B until after 28 weeks.

But they were still real to me. I know that I still would have missed them if they were gone. I would have missed them for the rest of my life.

The 2-hour redesign: Whaddya think?

Oh, how I long for all those oodles of time I used to have fiddling with fonts and fretting over layout choices.

This website redesign was not that. This was a whole lot of: "That doesn't look horrible, let's do that."

Although I guess I should admit that I spent a while on the banner but that's only because Photoshop Elements is — and I say this as someone with a lot of Adobe experience — completely counter-intuitive and offensively frustrating. If I thought there were a better image editing program for Macs I would buy it in an instant.

But apparently it's good that I spent time on the banner because it's now GIGANTIC. I don't know how I feel about that. I think I've decided it's sort of neat. Like the cover of a book and then you "look inside" by scrolling down. At least, that's what I'm going to tell myself because I really don't know how I would redesign it.

Also a very cool new addition is a button and grab box for FOR(m)UM, the forum I'm hosting for moms (dads are more than welcome, just not represented yet!) of multiples with cerebral palsy. I'm totally stoked about this forum and I'm so happy that people are finding connections there. If you would like to tell your friends/readers about it, please do and grab the button on the upper right while you're at it. (I know, it would be nice if the button were bigger, but I can't figure out how to do that yet. It would also be nice if I had a button for my actual blog... but it looks like that will have to wait for the next time I can string more than 15 baby-free minutes together.)

Oh, and if you're wondering why the green accents — it's the awareness ribbon color for cerebral palsy.

So, whaddya think?

The therapeutic effects of quitting therapy (for a little while, at least)

Last weekend my husband and I went on our first vacation without the boys since I got pregnant.

While we left the boys in the very capable hands (though, I think she would agree for that weekend, two too few!) of my mother-in-law, I worried about the four therapy-less days Malachi would have.

You see, in all my movements and interactions with him, I try to maximize his comfort and brain connections. I tuck his legs under his body as I pick him up; I'm careful not to touch the spot on the back of his head and neck that drives him crazy; I constantly search for ways to convince him to use his tummy muscles. These have become such an integral part of how I interact with both my boys I have a hard time even vocalizing what it is I'm doing and why.

So, if I'm not around, he'll get good care, but will it be optimal care? And isn't it super-important to optimize every minute in order to achieve the best outcome?

We moms often hear the refrain: "What's good for mommy is good for baby." And it makes sense. Moms aren't machines; we can't do our best when we have been giving 110 percent for months without a break.

And yet... a piece of us still feels like if we could be just a little more machine-like we can squeeze out that much more benefit for our child. I mean, what is another day when you've been working 10 in a row? Particularly for special needs moms, we feel like know we're the only person who knows all of our child's idiosyncrasies. And the weight of not doing everything right (equally impossible to never taking a break) is so huge. If I take time off, what will that do to his brain connections now and into the future?

So while I knew that taking time off was good for me and thus ultimately good for Malachi, on some level I still felt that this was a zero-sum game: while I recharged, Malachi would deplete his reserves.

What I didn't expect was how good it would be for him to not be around my crazy-ass anymore. Not because of that "what's good for you is good for him" mental acrobatic mumbo-jumbo, but because sometimes I just NEED TO GET OUT OF HIS WAY.

During our weekend of separation, Malachi reportedly rolled from his back to his tummy TWICE, which I've been trying to get him to do for months, and his persistent tongue thrust reflex that made eating such a challenge has mostly disappeared.

(Jaden also made leaps and bounds. I feel again like I have a Superbaby but this time because each time I turn my back he suddenly appears in a different location. They also both seemed so much bigger! I wrote recently about how they have suddenly become big kids and not babies, but I swear they grew two inches while we were gone and their faces look so much more mature. I know everybody says how fast babies grow, but it took being away to really see them and how different they are from a couple months ago.)

In case I had any lingering doubts about whether giving Malachi a break is inherently beneficial, two new Twitter followers I met when I got back to my pile of unread e-mail confirmed it for me. A really cool site called Moving Smart had a great recent post talking about how important it is to engage your children in play on their terms instead of dictating the rules of how you're "supposed" to move. But as a fellow mom, I really resonated with this post, in which Marie talks about her son with Apert syndrome.

Nearly since birth, we started Jack in therapy believing that he needed to be pushed early and hard to help him to develop to his best potential. His Dad and I were making the decisions we honestly believed were best for Jack. It was only last year when Jack was almost four years old that we realized that we were robbing Jack of his childhood. Everyday and every thing was work work work and Jack was withdrawing from people. He had learned that being with people meant being forced through things he did not want to do and constantly being asked for more more more with little time for what might interest him. 
Last summer was the first time since he was about two or three months old that he did not have therapy. We relaxed and tried to learn to play like Jack with the things that interest him and his development truly took off! He really began to talk. He began to actually enjoy spending time with close family. 

I have known to keep an eye on myself for overdoing Malachi's therapy ever since I read Uncommon Voyage — in which Laura Kramer said her son didn't learn to walk until age 4 when she and her husband left for their first vacation alone. So I don't sweat it too much when we have to miss a therapy appointment. I casually dismiss therapy recommendations when I feel like they would make me crazy or interfere with Malachi's non-physical development. I consciously chose not to read anything by Glenn Doman, including the very enticingly titled "What to do About Your Brain-Injured Child", because I knew it would encourage me to go overboard. We also don't have set "therapy time," in which we sit down and do exercises. I just try to incorporate them into whatever we're doing and whatever play is happening.

For all that, though, I think I was blind to how hard I push him and how much he — we — I, all need space away from each other in order to grow.

Not just want. Need.

Universal truths I've learned from babies

»  Messes have value.

»  No matter how complicated life seems, if you're cranky it's almost always because you're actually tired or hungry. 

»  Emotional pain is worse than physical pain. 

»  Break a problem down into infinitesimally small pieces to make it easier to solve. 

»  We may hate boundaries but appropriate ones make us feel safer and thus ultimately give us more freedom. 

»  The texture and timing of bowel movements are way more important to our health and wellbeing than we give them credit for. 

»  You can always find a way to make something fun. And if you can't, it's probably not worth doing.

»  Things are 'no' (i.e. forbidden) because they are dangerous, fragile or not yours. 

»  Wear your cutest clothes now because you won't fit into them later. 

»  It is natural to feel like a material object (a toy, a house) is part of you and to feel upset when it is lost. 

»  Staying somewhere where you can't learn/experience anything new is BORING and makes you want to cry.

»  Never give up.

»  Farting noises are always hilarious.