Skip to main content

Water, Aqua, Voda, h2o...

However you say it, it's on our minds...And very literally in Leo's case. Another run to the 'Hitch today determined that our little dude is not assimilating the fluid fast enough. The neurosurgeon was able to tell this by checking the shunt. She inserted a needle into the valve on his head and drew the CSF through a clear tube into a syringe. Since she got a full syringe of fluid, that proved that the valve works; then she held up the tube to see if the fluid would drain. It's a one way valve so if the fluid went down in the tube, that proves that the shunt in indeed still working and not clogged. And it did drain so the shunt is fine. However, the problem is that the fluid is still building up in his head.
Today his head measured a 50cm, when just two weeks ago it was at 48. The doc said the culprit is in his tummy. He is just not able to absorb and process the fluid in the amount needed as yet. There is just too much of a disparity between his body weight and size and the amount of fluid up there! The best fix for this includes him growing in size and coming into a working equilibrium with the fluid and the rate of absorption. However, and isn't there always a "however," when you are dealing with Leo...is that if in the next couple days the pressure builds back up to a unbearable amount for him (and us!) the other options all include surgery. Either she can go in and change the position of the shunt, i.e: bringing up from the peritoneum, and having it end in his heart/chest cavity for better absorption, or doing a surgery to try to actually remove the CSF producing tissues in his brain. The drawbacks to the first is that since there isn't a lot of room in the heart for extra tubing, he would have to have surgery every couple months as he grows to add more tubing. The drawback for the second option is that first, he needs all the brain tissue he's got, and second, that because of his abnormal brain structure, they might not be able to recognize all the CSF producing tissue anyway. Though in his case, even if they get some of it, it would probably make a difference in his fluid levels.
Well you can see what we are praying for! Grow baby grow!! As I write this, Leo is snoring on the couch, happy as can be and I am thankful that he will never know about all the heartache, (and headache) that his existence has caused us. I do hope though, that he will be able to feel and know how much love we have for him, and that no matter what, he is our son. Justin and I used to talk about our dreams and expectations for our son (at the time we didn't even know the gender yet, but had guesses). Things that we would teach him about life and love, the role models we would be etc, and now, at least for me, some (most?) of the heartache is the shattering of all these sweet dreams. And although Leo will never be that bright little boy of my imagination, never sit-up, run, talk, or perhaps even see us, he is present to us in a way that cannot be defined, expected, or even imagined. He is a tidal force that swirls around our family and demands change. Right now, I feel like I'm standing on the precipice of something huge, a liminal conversion of some sort in which perhaps Justin and I, and all connected to us, get tempered in a new kind of armor. An armor that enables us to withstand all the "slings and arrows" of this fallen world, and perhaps be able to shelter and help others through similar trials. He is our catalyst. And I have to believe this, because otherwise there is no meaning in our sufferings. Thanks to all of you who have shouldered this cross with us.

Comments

  1. Leo is in my prayers every night and I hope he grows and grows. You write beautifully...this post made me tear up. Once again, we don't know each other that well, but if you need anything we're here.

    ReplyDelete
  2. One thing you can be sure of - you are not alone! Here is another beautiful and heartfelt note from a friend, expressing something we all feel:

    "It is wonderful to know that so many people are praying for Leo and the whole family.

    Isn't it something how one tiny child can bring so many people together! People who will never meet in this life are already connected in a profound way simply because a precious child of God has been born.

    He hasn't spoken a word, but his life speaks eloquently of God's unconditional love for each of us. It's rather humbling. I wish I could say that my life has been as strong a witness, it hasn't. I have a lot to learn from Leo." ~ RL

    ReplyDelete
  3. Dear Ones,

    I tried to post a comment way back when all this began but for some reason it never reached you. I just wanted--and want--you to know that we are closely following all your heartbreak and joy. The girls look for new pictures and ooh and ahhh about beautiful baby Leo and Nika. And you are in our prayers every day, and more. Leo is also in the commemorative prayers at St. Tikhon's. You are brave and wonderful people.

    With all our love,
    Xenia

    ReplyDelete
  4. Yes, Anna and Justin, you are believing correctly. There is always meaning in suffering because nothing is ever wasted or random in God's economy. The challenge is to keep your hearts and spirits wide open even in the midst of pain and uncertainty. We continue to pray that you will be strengthened and encouraged as you catch glimpses of what God is certainly accomplishing in and through you as you care for the dear, sweet baby boy whom God has loaned to you for a time.

    ReplyDelete
  5. Oh Anna & Justin, Lord please help this little angel grow and grow so he may be comfortable with his sweet baby coos :-)

    ReplyDelete
  6. A little child comes to us in this world, grows, suffers and dies. He has the most profound impact on the world that a "person" could have. Leo and you his family are in the best of company. Glory to Jesus Christ! Love and pray for all of you daily.

    ReplyDelete
  7. Bo and I send our love. I'm recovering from the heart surgery and so am closer to empathizing with all of your medical concerns. I just read your most recent blog, Anna. You and Justin are growing in a way that will radiate from your family into corners of need you might not be able to imagine. With much love and many vivid memories. Leesha

    ReplyDelete
  8. Thank you for sharing your lives with so many. Our continued prayers and growing love...
    The Barberg family

    ReplyDelete
  9. You know you are all in my prayers daily. Leo truly is a precious gift. I can honestly say meeting him and his family changed my life. Lots of prayers for Leo's growth and comfort.

    ReplyDelete
  10. We love you all. We remember you to God often.

    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…