first of all, i'm so very grateful for so many incredible moms offering advice and sweet words of encouragement and wisdom after my post on monday. i've soaked in each one and i feel renewed vigor to love deeper and retain the hope of knowing we aren't alone. thank you for sharing hope with me. :)
today starts the first of three very un-fun medical procedures for little miss sassy.
barium fluoroscopy xray is today
endoscopy and colonoscopy in mid september.
no fun. no fun at all.
emery is still struggling to gain weight. despite my grand efforts to pump her full of fat and calories, protein shakes, high calorie formula and fat/carb powder supplements (duocal)....she somehow managed to loose a pound this month (bringing her weight to 19 lbs. 12 oz). a pound really isn't that much, but on her tiny frame, it's a big deal. the specialists went into hyperdrive and informed us we are dangerously close to landing in a feeding clinic.
so we are moving forward with procedures ending in "scopy", involving all sorts of yuckiness.
they are hoping to discover the reason for her inability to retain nutrients and calories...other than the fact that she is a 2 year old and will only eat when she is good and ready to eat :) she's got spunk for days, this girl.
our recent visits to GI (gastroenterology) have added to the long list of specialists. including ENT (ear nose and throat), nutritionist, weekly weight checks, 2xweek speech therapy, auditory tests, ear tubes every 6 months, monthly visits from an in home nurse to monitor her growth and medical needs, ortho docs making sure her bones aren't growing incorrectly, allergist to rule out as a cause of poor weight gain, cleft team and pediatric dentist.
ok seriously? are we talking about the same little girl?
the one that just giggled and scooted under my chair while playing hide and seek with her big brother?
the one that rides a skate board and mimics karate moves?
the one who organizes tea parties and shoots her dad with a squirt gun?
that long list is such a true example of how scary the list is...but how awesomely delightful the child is.
it reminds me a lot of the adoption referral process. i remember reading through dozens of google searches, researching special needs we were willing to accept. on paper, every single one seemed scary and easy to dwell on. i can remember researching "failure to thrive" and thinking how horrible that would be. i thought the same about a cleft lip and palate.
it wasn't something i would willingly choose for my child...because, after all, i wanted a "healthy child."
i realize how far my fear was from the truth.
if i could have glimpsed our future?
i wouldn't have feared the "special needs" list.
i would have been more open and spent a lot less time googling.
i would have willingly checked "cleft lip/cleft palate" instead of worrying so much about my child having a scar.
but then again, i'm glad i didn't know. for what a delight to find the treasure of my heart in a place that i once thought was scary.
these things that some people call "defects" are not defective. they are created.
made on purpose.
when i look at her, i never see the long list.
it doesn't exist in real life...only on paper.
if you think of us today, pray that they can find something...or nothing. at this point, i'm not sure which is better :)