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Pestering Will Get You...

If that is, you are talking about getting medical stuff done. If however, you are my five year old, then pestering will get you an early bedtime without supper. Isn't it unfair how grownups can do things kids aren't allowed? What is the rhyme and reason there anyway?

 Well my pestering DHMC has payed off today, after I was transferred to someone who is basically an "expediter," and "all around ruffled feathers soother," who quickly managed to slip through the sticky medical web and managed to pull up some information, finally. (But can you believe that until I started with the phone calls and messages, they didn't actually even have anything on his file about the surgery?) The DHMC patient data system is unfathomable and mysterious. Not for mere mortals!

So as of today, the date for Leo's second big cut is February 1st.

And the belated results of the EEG are normal, at least normal for little man, so no need to up his Keppra dose. This is good, since I don't want to flood his little body with chemicals, but I would of course, if it meant no seizures, but it seems that his test didn't show any abnormal electricity that could lead to seizures, so all is well. Fingers crossed and all that however.

On another note, Leo is really coming into himself lately. Although he always seemed very reactive and animated to us, even when he was flat on his back last year, now that his body is catching up, he just seems to shine! He is crawling strong, pulling up to stand on great grandmaw's legs, shrieking and giggling with his sister while bouncing on the bed, throwing himself on to all fours, walking with his hands held, and exploring the whole house on his own. He eats anything and everything, although he is still on the low end of the scale. His PCP has signed him up to visit with an oral and feeding therapist, just to make sure he puts on a bit of chub for the surgery. She is pretty sure that the reason his weight has dropped off is because his mobility and activeness has shot through the roof these past months. He is just burning through all his calories without packing anything on. Lucky little bum! Wish we all had that problem. Anyway, even though I'm not too concerned, he still gets a big dollop of coconut oil or butter with all his food.

Leo is such a little love. He is definitely mama's boy, and everybody else's boy too. Every time I pick him up, he gives me these huge open mouth kisses, chuckling madly the whole time. Its awesome, although kinda in a wet and sticky way. You don't have to steal your kisses from this one.

Thanks for reading, and if you have been here since the beginning, and even if you haven't and just stumbled across us yesterday, bless you for taking a moment to catch up with our little lion man.
 And please keep him, and us, in your prayers as we go into his second major head redo!

His Trademark Flirty Look


  1. I check in every day, watching for updates and progress......we will put him on the prayer list for the 2/1 surgery...and our group of cyberspace crazy ladies will hold him in our hearts.

  2. Awww, the new pic at the top of your blog is so sweet. Love it. I will definitely be praying leading up to, and the day of the surgery. Let him know that some complete stranger in Colorado is praying like crazy for him. The flirty look is irresistible. I'D squeeze him. :) My third little one is such a mama's girl, way more than the other two, and I just eat it up!

    1. We will be praying hard, Anna! Love hearing about how much the little lion is up to these days - he sounds like such a love. I hope we can see him soon. Lucia prays for him every night. Love to you all.


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