Inhabiting the Place Between

This post is mostly about medical stuff, but let me start by writing about a toy fast that is currently taking place in our home.  I read another blogger and her own toy fast, and, whoooee, it really appealed to me.  She described exactly what happens in our house.  The Taters come downstairs, then immediately do something that she describes as the “dump and scatter”.  Between Mouse and Chipmunk, it takes about ten minutes flat to spread every toy known to man around our small house.  Puzzle pieces become chocolate chips, coasters get stuffed into a bag, never to be seen again, blocks get dumped out but never used, it is a hot mess.

Jisun, what does this have to do with medical updates? You’ve been cryptically referring to these mysterious medical issues all week, and we want to know what the heck is happening.

Ok, sorry.  I’m beginning to think that the medical field perhaps has too many toys. And by toys, I mean data. We are at an unprecedented time in which we humans are able to collect some truly vast amounts of data. We can measure all sorts of things in LP’s blood, know exactly how much time he spends in REM sleep, look at the electric charge in his body, the list goes on. The question is… What does all that mean???  After having gone to specialist after specialist, I’m beginning to feel like the medical field perhaps has too many toys data available, but not enough ability to see the bigger picture.  I watch Mouse and Chipmunk, frenzied and tossing this and that all over the place, and they lose sight of the bigger picture.

I’ve come to understand that modern medicine hasn’t come to any definitive understanding of much at all.  Yes, they understand some basic body functions, and even some very complicated ones.  Medicine has managed to keep more people alive than in any time of human existence.  But it is all a big effing guessing game.  They are very well trained, educated guessers.  There are too many toys data strewn about, and even then it doesn’t feel like enough.  It is like taking 100 puzzle pieces from a 1,000 piece puzzle and trying to guess what it really looks like.

LP has sleep apnea, as defined currently by medical science. Due to his floppy airways, there are periods during his sleep when his breathing temporarily stops altogether (apnea), as well as periods during which his breathing slows almost to the point of stopping (hypopnea). Everyone does these things to varying degrees. When these apnea/hypopnea episodes are numerous and long lasting, one has to wonder if the person is getting enough oxygen to their brain. There is good evidence that not getting enough oxygen to the brain can lead to all kinds of attention disorders, slow growth, and cognitive delays. Fortunately, LP seems to be waking himself each time this happens. That means he gets enough oxygen to his brain, but also means he spends way less time in REM sleep than the average baby.

Here lies my issue. If the average baby spends 50% of his time in REM sleep, than what does that even mean? Is it just based on a survey of lots of babies? Does it account for how a baby might sleep differently if bottle fed or breast fed?  Crib or co-sleeping? Does it account for developmental stage? Does this vary according to how big/small a baby is? Just because it is average doesn’t mean it is ideal. The average American struggles with overweight. Does that mean it is ideal? Obviously not.

The other thing that we have discovered is that LP had some very unusual thyroid numbers.  Let me give some history.  When we first started thinking LP had Ds, I started wondering if his thyroid was working correctly.  He’s got all the signs: dry skin, tired, brittle hair, cold hands, hoarse cry (this one is going away).  His newborn screen didn’t come back unusual, but I asked our pedi to do the bloodwork again when we were getting the chromosome test done.  Came back as “normal”.  I still couldn’t shake that things were ok.  It felt very akin to when I thought he had Ds.  I was the only one who thought it, and despite that, I just couldn’t let the idea go.

We finally ran more extensive tests and it all came back very odd.  Our pediatrician was totally freaked out, and our antroposopical family doctor has never seen this particular constellation of thyroid test numbers.  We got an emergency referral to a pediatric endocrinologist, and she wanted to retest.  Yah.

What does this all mean?  It means jack poop.  No one knows.  It looks like LP has issues with his sleep, but whether or not it is just his chromosomally-enhanced way of dealing with his floppy airways, or if it is an actual problem is anyone’s guess.  Same with the thyroid.  While it could be a sign that he has something seriously wrong with his thyroid (his reverse T3 numbers were astronomically high), it could also mean that nature has prevailed and figured out a way to get his body to work despite the workings of his extra genetic material.

In the meantime, we did have our first assessment for Early Intervention services.  LP is doing well.  It is possible that he won’t qualify for physical therapy (PT) or occupational therapy (OT) because while he is delayed in some areas, he is not delayed enough.  (roll eyes and insert disrespectful remarks here)  The PT who came to do the assessment was super informative and gave us an idea of what to help LP with to get him to the next place developmentally so at least that part was good.

We are waiting to see another ENT to talk about laser surgery to widen LP’s airways.  Then back to the pulmonary clinic to discuss the apnea.  In the meantime, I’m hoping that the hospital doesn’t screw up LP’s thyroid bloodwork (they have messed something up the last three times we have gone), and when that comes back, we are going to talk to a pediatric endochrinologist.

Honestly, I’m not holding my breath.  I do think that there is something going on with him.  I just won’t accept that his current state is ideal, and that it just “comes with the Down syndrome”.  He is struggling in some ways, and not in others.  Maybe we can do something about it, maybe we can’t.  And don’t get me wrong.  I see what medicine has done for kids with Down syndrome, and I’m grateful.  The average lifespan of a child with Down syndrome in the last hundred years has gone from 12 to 60 years.  Am I thankful that I probably won’t have to say goodbye to my child while he is in his teens?  Hell, yes.  Do I think that medicine really understands all of why my kid’s body acts the way it does?  Not really. So we will be in the place in between. Between science, intuition, and knowledge. I’m trying to be more ok with that.

Here are some Tater pictures.  I like getting all fired up and then looking at Tater pictures.  xoxo

6 Comments on “Inhabiting the Place Between”

  1. Diane says:

    Oh man…I’m digging the toy fast! ;) It’s been a disaster here lately. We finally have our EI eval Friday and I’m not expecting much. Not getting PT or OT at this early of an age seems standard from what I keep hearing. I’m not holding my breath.

  2. Lisa says:

    I so hear you! I think that’s kind of how I felt about EI in the end – yeah, it’s going to take longer for him to x, y and z – so what? What does it mean in the grand scheme of things?

    LOVE seeing all those great pics!

  3. You aren’t kidding about the medical profession. We have family members that are doctors and surgeons, so I won’t bash them too hard, but I feel like doctor trips are more about protecting my wallet from over-treating with “toys” than they are about assessing the problem – and the degree to which the problem needs to be treated.

    Little Bird stops breathing from time to time…its scary as hell. On our pediatrician’s advice, we sleep him sitting up in a bouncy chair, and it dramatically reduced his apnea and breath-stopping. Of course the flip side to that is that when we travel with him, we have to bring the bouncy seat everywhere – he can’t sleep laying flat now. : (

    Great post – you are a very good writer!


  4. Jenny says:

    While I am thankful for all the strides the medical community has made in helping our children with things they have issues with, I have to say I just feel our kids are over analyzed for the most part. It becomes exhausting and they begin to feel like giant projects instead of our babies.

    I always enjoy your posts. Love the pictures too :)

  5. Val says:

    I have always said that medicine is more art than science, or perhaps equal parts art and science. The biggest help is to find the best diagnostician that you can. Unfortunately younger docs are taught to use machines more than touching and listening, which I believe are the best means by which to turn the art into usable science.


  6. Karen Wagener says:

    I agree with the other Nana. Great photos. Those are cute kids.

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