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About Our Boy

I realize that I haven't posted anything about Leo recently. Justin and I tend to ramble on about the thoughts floating around in our heads and neglect to talk about the real subject of this blog. Our little Leo Clement. Of course he's not so little these days! Weighing in at almost 14 lb, he's growing out of most of his clothes! These past couple weeks we've been busy with appointments and therapies. The recent news on the medical side is that the geneticists have requested a 10 month brain scan done, the results of which will be sent to this internationally known brain malformation specialist on the west coast. The idea is that he will be able to, just by looking at Leo's scans, tell whether his condition was caused by genetics or by a fluke vascular event. Maybe he would be able to tell more precisely what happened and when it happened. Sure a lot of this is purely academic at this point, but it would be nice to know! Even though everyone has told me it wasn't my fault, in my dark days, it's hard to keep that card from resurfacing. On another note, part of me hopes that the scan will show way more brain matter then the previous pre-shunt scan. Our guy is just such a little miracle, and with all your prayers, I would not be surprised if this really happened.
Leo also saw a developmental specialist this week who basically said, that from his diagnosis, and from what she saw of him way back when he was a couple days old, she would not have believed that he could do all the things that he does now. Even though I knew all that, it was nice to hear confirmation of our own observations. Vegetable he isn't! Not in ANY shape or form! Take notice medical community! Perhaps it's time to update the dusty old medical texts on Hydranencephaly?
He was also fitted for a support collar to help him with head control. Even though he is getting stronger everyday and he can move his head all over the place, he can't hold it up yet when vertical. We aren't giving up hope in that regard. Thank God for shunts! Speaking of his head, we are getting him a referral to the guru of all things cranial at Dartmouth. The hope is that he can do something to fix the heavy overlapping of his sutures. I think he is super cute, but I'm tired of people gawking at his head, and finding hats that fit is a trial. And outfits with hoods? Forget it.
Anyway, that is the latest on our little lion, with I'm sure more to come. It just never gets boring in our house! Although we are all grateful that the hustle and bustle of the holiday are over, and we can just settle in for the long winter haul. Hopefully minus the eternal cycle of sickness. We were all sick in varying degrees the past couple weeks, and Leo had some chest congestion along with a fever. Unlike his older sister when not feeling well, he was perfectly amiable and even slept all night. It seems that contrary to what the doctors told us in the hospital, his immune system works fine, and perhaps even better then ours! Here is a little video of some Leo lovin'. Unfortunately by the time I got the camera out, he was getting bored with the game, but right before he was pulling out the belly laughs! Anyway I still got a couple on camera. Enjoy, and as always, thank you for reading and for all the kind words and prayers that just keep coming! We love it.

Comments

  1. Looks like lots of fun up there in NH. Leo is doing amazing! Thanks for the update.
    Marcy

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  2. That is all such great news and I love the photo of him in the header!

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  3. I love this post, and the video. I have been checking your blog a lot lately, hoping for a new post. Yay! Michael really loved the video. He was really excited to see "baby yo-yo play kee-kee-boo."

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  4. All along, Leo's photos and videos show what words can never say. It reminds me that God chooses the weak of the world to confound the wise. We will continue to pray for more miracles for you all in this new year.
    Love,
    K&D

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  5. Anna - I would love to knit some hats for Leo - I just need a few measurements - circumference and distance from the bottom of the hat to the top - I would love to do something for your sweet little boy!
    Janscabrio1@aol.com. Janice from St. Basil's in Wilmington

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  6. I love hearing recent Leo news! What a great laugh he has - and Nika is definitely showing him how to have fun. Love you guys - we will keep the prayers coming.

    -Lydia, Taylor & Lucia

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  7. peek-a-boo has never been so entrancing and wonderful!!! my face was inches from the screen watching this, thankyou for this video. so freggin' precious.

    Mel Sakran

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