One thing we have learned over the past year +, is that sometimes a baby superstore and lots of hand-me-downs can't even get you close. So many things in our life have become so normal to us, that we often forget how truly uncommon they are until we see someone giving it a strange look, like "what in the world is that torture looking device". We sometimes have to step back and think about how the majority of our friends and family really have no visual of what it means to be on continuous feeds or have developmental issues and need pieces of equipment to help. So we decided to help share a better understanding of those unusual things in our life that have become normal through some pictures and descriptions. I'm going to add a little at a time until I catch up on all of the things that have been a part of his life so far, and then update with each new piece in our journey. I'm part of several groups on Facebook for support and resources related to Lalo's different health issues - Feeding Tube Awareness, Raising Healthy Diaphragmatic Hernia Children, Mommies of Miracles, and Hemi-Kids and Pediatric Stroke Survivors, etc. One of the main goals of these groups is to help raise awareness and acceptance of kids that have various challenges. My purpose here is to share awareness and acceptance to those of you that don't get to see Lalo in daily life. We hope that you find this informational and please ask us questions if you have them. Here's a little more detailed peak at some of the gear Lalito has brought into our home...
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What: A helmet
Purpose: To correct
plagiocephaly (and the occasional football game), which stemmed from his weeks on ECMO where they couldn't change his position. He laid on his back, with his head turned to the left so the ECMO cannulas that went in the right side of his neck were facing up.
The good, the bad, and the ugly: Good - It helped transition his misshapen head from extremely flat on the back, left to nice and round. Bad - It had a tendency to stink like funk. Ugly - 6 months of 22.5 hours/day of wearing a helmet...don't miss that at all!
Lalo rocking it:
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| Front view - Easter 2011 |
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| Side View - Easter 2011 |
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