A Twist

We are in Paris for a week, mainly for work, with the weekends tacked on to spend with Stellan’s French grandparents. During one of our visits last year, just around when we learned of Stellan’s diagnosis, we met with a pediatrician here so that if he ever got sick while visiting he could be taken care of. Knowing we were coming back this week, she arranged to see Stellan again today and also set up an appointment with a pediatric neurologist. A third opinion, if you will. And the results were quite interesting.

You see, Stellan’s first diagnosis came via his primary neurologist in New York. Six or seven weeks later, we spent a day at CHOP in Philadelphia, where we saw another neurologist who spent about an hour with us, reviewing Stellan’s MRI in detail and answering our questions, something that hadn’t happened prior. At that time, Stellan was just starting his intense regime of therapy sessions and hadn’t made much progress, so based on his level of interactivity at the appointment and the pictures on the screen, we left Philly with heavy hearts and a pretty depressing prognosis of the “he probably won’t walk or talk” type.

Fast forward to early December, and his regular neurologist was impressed with his progress already. And now, in March, he’s made some pretty great strides, even if he still isn’t literally making them, or even close. Based on how he interacts with those around him, how he responds, and the progress he has made with his head control, we have all been very pleased with him and his hard work. In the past few months I guess I’ve allowed myself to push negativity aside (as much as possible, anyway) and hope for and expect the best for Stellan. I just don’t allow myself to think about the worst outcomes, and anyway I usually don’t have time to.

So today we saw this pediatric neurologist in Paris. Let me just go ahead and get this part out of the way – HE SPENT TWO AND A HALF HOURS WITH US. Ok, done with that part (but happy to talk about it with anyone who is interested. TWO AND A HALF HOURS!!!!) He went through every frame of the MRI and explained everything in great detail, in French obviously, which was helpful for all of us. For Quentin’s parents, since it was the first time they were hearing this first-hand, and for Quentin and me, who have now had time to learn a lot more, digest it (mostly), and can ask more intelligent questions. Let’s be honest. Nothing seems intelligent the first time you’re delivered awful health news – you don’t really have the presence of mind to say or ask anything at all, let alone anything smart or particularly useful.

Perhaps most interesting, he delivered a different diagnosis altogether. Rather than Pachygyria, he feels that Stellan has Polymicrogyria. The general prognosis for Stellan may end up being pretty much the same, but there are some nuances which might prove to be better. Or maybe not… Only time will tell and I don’t want to get my hopes up.

Which brings me back to that part I wrote earlier about exactly that. My hopes. The progress he has made. It’s amazing. And yet I find that every visit with a new doctor serves up what feels like a swift kick in the gut. I get dropped emotionally several feet, or miles, backward from where I was just hours before after hearing someone tell us gravely that the prognosis for our adorable son to walk or talk is grim at best. Today’s prognosis was more acutely focused on difficulties Stellan will face with speech and eating, but the tension or spasticity that Stellan exhibits when he wants to move was also cause for concern in the neurologist’s eyes.

So it has been a rough day. But, since I feel compelled to end every post on a positive note – I guess that’s just how I am – I will just say this. Stellan has been sick for nearly a week and has barely cracked a smile. But he has started feeling much better today and the smiles were back with a vengeance. And while I was up writing this, way past my bedtime, he has been sleeping next to me. About 10 minutes ago, totally asleep nearly on his belly, he did something he has never done. He pushed up on his side and rolled right over completely onto his back, almost to his other side even. On purpose. Without waking himself up crying. So there.

Comments

Gemma
Reply

Nice rolling over :) I bet you woke Quentin up to tell him what Stellan just did! Glad to hear that he’s smiling again and the progress he’s making. Keep the good news coming!

Kathleen
Reply

Love you and Q and S so so much. I am perpetually amazed by the strength of all three of you. Miss you bunches. If you wanna reroute your flight home through Chicago, you’d be most welcome. Xoxo

Laura
Reply

Noelle, I’m friends with Nicole and she shared your blog with me. I just wanted to say you and your family, and most of all your son, are all so courageous and lovely, I am looking forward to following your travels with Stellan.

Noelle
Reply

Thanks Laura. We appreciate your kind words and support!

Maite
Reply

Every little step, new movement or change is important even is the future picture is not as cheerful as we may like, stellan is making is own effort and it will payback

un abrazo guapisima

Kassia
Reply

Fantastic news Noelle! Also, my I tip my hat to your doctor. I am hopeful for Stellan, you, Quentin, and your families.

Nicole
Reply

I absolutely adore that little smile. He’s going to surprise us all, you just wait. And I’m so excited to be there to watch ;)

Melina
Reply

I check your blog regularly to get updates on Stellan – I am glad to hear you get to be back in Paris for a while and that Stellan gets to visit with his grandparents. One of my worries being back in the U.S. is around the attention (or lack thereof) we get from doctors and medical services in general here. Sounds like you are definitely seeing the difference. Sending you guys lots of hugs, profite-bien de vos jours en France.

Noelle
Reply

Thanks Melina. We’ve actually had some really great experiences (aaaaand some not-so-great experiences) with doctors here. Stellan has seen docs in NYC, Westchester, Philly, and San Diego, and the care has always been excellent. So we consider ourselves lucky!

Eva
Reply

That smile is worth millions. So is the news about the push-up/roll over.
Safe journey home. We will be over to walk Ellie soon. Xo

Noelle
Reply

Thanks Eva! Hope to see you and Moe soon. :)

Maria
Reply

Hi Noelle! Haven’t seen you for ages! Probably you remember we’ve met in la Habana a few years ago. i just wanted to say that you three are amazing! I do admire your positive thinking, hardworking and loads of love! Myself and my 1,5 years old Victor hope and prey that everything will go the best way it is possible. Xx Maria

Noelle
Reply

Thanks so much Maria! Hope all is well with you and your family. And hope to see you sometime in NYC! xx

Natalie
Reply

Whoo HOO!!! Amazing how he does these little miracles just when you need it :-) ! Love all of you– so happy to hear he is making fabulous progress as I know he would and will. Its marvelous that you got a doctor to spend so much time with you going over everything and in French to boot– great for Quentin. N xxoxx

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