Skip to main content

Back Down The Rabbit Hole



So this winterish spring time has, so far, been hard for us all at Chez DuMoulin. It seems to have permanently frozen in that time between the two steps forward and one step back. Many of you know that we've been faced with a housing change, and though that doesn't necessarily mean that it's bad, but what it does mean is change (and I'm not a big fan..) Change that we aren't quite ready for. Since then we've jumped both feet into the housing/real estate wonder (not) land and gotten pretty disenchanted. We still have time to find a new lion den for our lion cub, so its not grim as all that. But the tenacious and frigid winter has not given up yet around here, so the doldrums continue. To really ice the cake, Leo has been pretty ill this past week; starting out with a few mini seizure episodes and turning into full blown infections in his ear, chest, and unfortunately, urinary tract. Oh yeah, fun times! Yesterday was spent in the ER with him, running the standard gamma of Leo tests. Shunt x-ray studies, MRI, urine analysis, because you know, unlike normal kids who when sick get tucked into bed with chicken soup and a movie, Leo gets the full monty. Every. Single. Time. Heck why am I complaining? I was the one who brought him there. Anyway after 6 hours trying to keep a sick, but still active (and pissed off) three year old contained in a tiny ER cell, the results were at best, ambiguous and frustrating. It seems like other then the usual respiratory infection stuff, Leo has fluid collecting in the pleural space of his lung, again. You know that moment when the doctors pronounce something that you weren't prepared to hear, ever again... Yeah it wasn't great.
The goodish news is that there isn't a lot of fluid, not enough to be dangerous to his lung function again, and that his shunt is working properly, since he doesn't seem to have malfunction symptoms. But the doctors are still worried, which in turn makes me even more so. They let us go last night but want to monitor him closely for the next week when we will come back for another x-ray. We are all hoping that the fluid will be gone or at least diminished. If there is more fluid, then more issues will need to be addressed. And I imagine it will mean more surgery.  So please friends, pray for Leo, and for us, that this rabbit hole will be a little one, that this mystery fluid will go away, and that spring will finally come to dispel this eternal winter with it's unmerited hardships.




Cheeky Lion rallying his grin upon leaving the ER.





Comments

  1. I am so sorry to hear; how very stressful. lighting a candle for you all at church tonight and praying...

    ReplyDelete
  2. Praying for you all! Leo is adorable (as always!)

    ReplyDelete
  3. Oh my, I'm sorry to hear this. Leo is prayed for at our church for every service and he is in my daily prayers and has been since birth! We won't stop now! :)

    And what a cutie pie!!

    ReplyDelete
  4. My gosh he's gotten so big! Will continue to keep him close to our hearts.

    ReplyDelete
  5. daily, daily, daily prayers and always will

    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…