Skip to main content

Tree Pose

So in yoga there is a pose called the Tree. It's a balancing pose, so you stand on one leg, the other bent up with your foot resting above your knee. There are all kinds of variations of this pose, but the essential part, the foundation of the tree, never changes. Just like a real life tree, it is rooted into the earth, and although there are gales and windstorms, the tree stays firm in the midst of the tempest. I realize that the only way to survive the hardships of these sudden and completely uncontrollable forces of life is this ability to root down in your foundation, while the rest of you remains fluid and able to shift in the wind. Your foundation has to be solid though, no building it on sand! Our foundation we have come to know, is built on the most powerful of all forces. It is built on the solidity of faith, love and most of all, prayer. Even though, today we are reeling from the recent news, our foundation is steadfast and pure. And it has proven to us, once again, that life is never a given, that there is no place for assumptions, that standing in the midst of a rolling tempest, there is hope and salvation. I won't keep you in suspense any longer, here is the short (hopefully concise) version of what we are still trying to wrap our minds around.
I got a phone call today from neurology asking us to come in so that they can re-program Leo's shunt, because apparently, they forgot to do it after the MRI. I didn't even know that they were supposed to do that, much less remember about it! Because Leo's shunt is adjustable, in other words magnetic, the forces involved in the MRI, also magnetic, would have (Of course!) interfered with his settings. So back we went to see the neuro folks. And as we got that taken care of, we got the low down on new information from the MRI.
Let me put it simply: MIRACLES CAN HAPPEN! Our baby is a mysterious miraculous wonder. Where there was nothing before, now there is! In the doc's words "Leo has way more brain tissue then we thought!" He has lots!!! Because of the massive, massive amounts of fluid in his head, his brain was compressed to such a tiny thin layer, that they missed it all together. After 7 months of decompression, his new slides look nothing at all like his old ones. Although the brain matter there is abnormal to some extent and what is seen there right now fits a new diagnosis called schizencephaly. See more about that here. While this diagnosis still implies some manner of brain damage, it is MUCH more hopeful then Hydranencephaly. Developmental wise, the sky is the limit for him. However, there is also bad news, and that is that there is still some fluid trapped in the top of head, away from where the shunt is draining. What this means is that the back part of his brain on top is still being compressed by fluid, and this can cause all kinds of problems. It is also fairly heavy and I imagine pretty uncomfortable for him. It definitely explains why he doesn't like being too upright, because then the fluid weighs pushes down harder on his brain. So this is something we want to take care of sooner then later. There aren't a lot of options in that regard, either we drain the fluid there by putting in another shunt on top, which still requires some major surgery, or we take care of the whole problem in the first place by doing the cranial surgery in which that whole top part is eliminated and reshaped. The good news is that the fluid itself is actually outside of the sac that houses his brain. So the surgery would be pretty straightforward in that regard. There are plenty of risks however, and plenty of hurdles that still need to be addressed, and still plenty of information that we need to gather including another detailed MRI to determine the location of the main artery which runs up and over his skull. Anyway lots of things on the docket for the next couple of weeks or so.
As you can imagine, both Justin and I are still reeling from the news and what it all means for our immediate future. And I just keep thinking of the Tree pose. With all this new medical data buffeting us, I know that my little Leo man hasn't changed. In his foundation, his essence, though it is buffeted, labeled, submitted to surgery, is nevertheless, strong, rooted and sheltered through faith and love. And because he is, so are we.
Thank you thank you thank you dear family, friends, readers for your prayers and for caring about us. You too, have played a part in the miracle that is Leo. Please don't stop, because he will need your prayers for strength to go through these next tests and the intensive surgery in the near future.


Comments

  1. Yeahhhh!!!!!!!!
    The prayers will keep flowing from Salem as will our love.

    ReplyDelete
  2. Exactly what we believed and prayed for--that his brain matter was just pushed against his skull by all the fluid and that ongoing neuronal connections would continually form as the fluid was drained away. Our God is an awesome God...and Leo is an awesome child! We love you and of course we'll keep praying.--K&D

    ReplyDelete
  3. Your little Leo will pull through all: I can see it in his eyes.
    I love your tree pose analogy~so true for all of us.

    ReplyDelete
  4. LEO!!! You've got brains to go with your good looks. We are so thankful to God for the good news. We will keep praying for ya'll as you discern the best course of action from here. We love the DuMoulin's.

    -Brantley, Sunny, John Basil, & NIcholas

    ReplyDelete
  5. I just keep thinking about how all along you guys have listened to the docs, but mostly kept your focus on loving Leo no matter what was going to happen. So many people would have heard the initial diagnosis/prognosis and been too afraid to give their hearts to a "terminal" infant, and that would just be so doubly tragic. Thank God for your willingness to draw on His strength to give so much love to Leo - we can now see how much that has helped him to heal and flourish.

    ReplyDelete
  6. Oh, I think I'm going to cry. I am so, so, so happy for all of you. This is just the most amazing news. You all continue to be in our thoughts and prayers!!

    ReplyDelete
  7. The prayers from Wilmington just keep coming! Great news! Leo and all of you are just amazing. Bless his heart!

    ReplyDelete
  8. Glory to God! And what a fantastic feastday for such a glorious announcement!

    My heart is full.

    Joyous Feastday!

    ReplyDelete
  9. Fr. Alexander KuchtaMarch 25, 2011 at 1:06 PM

    Such good news to hear on this Feast of the Annunciation! I continue to remember Leo and your family at every Divine Liturgy and am so glad to hear about these latest developments. God bless and keep you all. We will keep the prayers coming.

    ReplyDelete
  10. I don't even know you, but this makes me so happy that I'm fighting the tears. Go Leo go! Show 'em what you got!

    ReplyDelete
  11. Glory to God in the highest and peace to His people on earth. Prayers continue. All four of you have a permanent place in my heart.
    ~~Claire

    ReplyDelete
  12. I echo what "k" said. Seventh months and going strong! Go Leo go! Praise be to God!

    And looking at all his pictures always makes me smile. He's SO DARNED CUTE!!!

    (Also, sorry we missed you this past week in Clamtown! Next time!)

    ReplyDelete
  13. Your spiritual family at St. Gregory's rejoices with you.

    ReplyDelete
  14. "Sometimes if you have faith, Miracles do happen!" -jedwink (another miracle boy)

    I thank God for His love for Leo and you and all of us who are growing in faith by loving Leo. Thank you, Lord, that miracles do happen.

    ReplyDelete
  15. I've been reading through your story this morning and I'm just sitting here in tears; partially from all the similarities our boys share, partially from your family's beautiful, beautiful faith. Lots of good vibes & prayers & celebration your way.

    Looking forward to reading more of Leo's story,

    Cassie

    ReplyDelete
  16. Wonderful, wonderful news ! God be praised !
    Prayers for you all will continue from us in Wales, UK.......

    ReplyDelete

Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…