Skip to main content

Tough Love

A quick update: Leo had his MRI this morning, and it all went well. We got to hold his hands and be there when they put him under with the anesthesia. Although it did take them four tries with the IV because of all his lovely baby chub. He enjoyed the long hour and half nap in the MRI machine (finally a nap without interruptions from screaming 4yr olds, slamming doors and dropped pans etc) and came out of it slightly groggy but still with his usual sweet smile. What a tough dude! He has had several seizures tonight, but they did mention that sometimes the drugs can lower the seizure threshold in kiddos for a little while. Hopefully tomorrow he will be back to 100% and no seizures. Although the helmet wearing gets more serious, (took a break from it today) with the hours getting longer. In five days we need to work up to the full 23 hrs.
I know everyone is very interested in the results of the scans, and I am assuming that we will get a phone call from his docs in the next couple of days. As usual, the techs are not allowed to say anything! So we need to wait until the docs get to it. (We will post more when we get the info.) We are so glad that we where able to finally get this done, for better or for worse, and hopefully this will be the last procedure for a while! Leo is always full of surprises, but I certainly prefer the non-medical ones. While we were sitting in the hospital cafe, our lunch sharing the tabletop with the ward's buzzer, I realized that it will never get easier. Signing those forms, walking away from your baby when he is totally dead to the world, and then just waiting, and waiting, trying to stay occupied even though you can't help glancing at the buzzer every couple of seconds. Even though the MRI is not a big deal, not like his previous surgeries, it was still hard. It's terrible how inadequate you can feel in those situations. As a parent, you know exactly what to do for your child, how to make them happy, and how to keep them safe. But in these situations, you have to be step aside, you have disengage and let the professionals take over because in this instance, they are the ones with the knowledge. All we can do, is just keep vigil, pray, and trust. But gosh is it tough, every single time.


  1. Thank you so much for the update! Your entire family are such troopers. We love you all so much.


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…