About Eli

Eli was born in February 2017. Since then he has been diagnosed with sagittal craniosynostosis, hypoparathyroidism/hypocalcemia, and disproportionate short stature. He does not yet have a syndrome diagnosis. This is our story.

Comments

Post a Comment

Popular posts from this blog

The Word “Midget,” and Why We Don’t Say It

Image
 For some reason I’ve recently seen several different articles (not even shared by dwarfism community friends) about different sporting leagues, usually children’s leagues, being lobbied to r emove the word “midget” as a classification. Inevitably, the comments of these news articles turn into a total (excuse my language) shitshow, and I see many MANY people complaining about the world today being too politically correct, calling people who are offended “snowflakes,” saying it isn’t meant in a mean way so people shouldn’t care, etc. I know I have expressed multiple times that midget is NOT an acceptable word, but I wanted to go more into why that is, so people understand where those in the dwarfism community are coming from. To most of the dwarfism community, the word “midget” is comparable to using the r-word to describe someone who is intellectually disabled. It’s beyond not cool. It’s hurtful and offensive and it makes me cringe every time I hear it. As a preface, I do not hold ...
Read more

My Unsolicited Thoughts on Healthcare

Image
Right now, the political climate in our country is…tricky, to say the least. But I like to think most people agree political differences shouldn’t come between close friend and family relationships. I tend to believe that. I make it a point to never remove someone from my social media due to differing political opinions, because I never want to live in an echo chamber where everyone agrees with me. With one exception. Healthcare. Be warned, if you don’t want to read a rant right now, turn back.  For most lucky people, healthcare is a political talking point. Doctor visits are routine and (comparatively) affordable, and essentially an afterthought to daily life. That isn’t the case for us. Healthcare and insurance are all consuming facts of life. The fact that Eli was born after mandatory preexisting condition coverage came into play is no small miracle to me. Worrying about healthcare is an everyday experience for me. (I plan on talking more about the costs we face each month, bu...
Read more

Developmental Growth v. Physical Growth

I haven’t written anything in forever, not because I’ve forgotten about this, but because there really isn’t much to report. Our lives are the epitome of mundane, and for the most part that describes Eli’s current healthcare routine as well. With Eli’s particular diagnosis the first two years are probably the most dangerous, and we’ve finally passed that milestone. The things we worry about the most now are his calcium levels and getting sick in general. It doesn’t occur to most people, but even though Eli isn’t immunosuppressed, his immune system is not on par with his peers. He’s so much smaller...closer to the size of a one year old, and that means his lungs, nasal passages, etc. are smaller too, so he is more susceptible to illness than other kids his age. His calcium relates to his hypoparathyroidism. I don’t know the exact statistics, but hypoparathyroidism is quite rare on it’s own. It’s especially rare to be born with it, rather than to develop it as a transient illness later ...
Read more