Have you ever felt so happy you thought you could cry? Have you ever experienced so much joy that you have absolutely no idea what to do with yourself? Joy that makes all emotional expressions (singing, shouting, dancing, crying, laughing, etc) seem too small? Like you can't pick just one but even the combo of them all just isn't expressive enough?
Today is a day like that for me.
This morning I took Emma to see Elaine, the pediatric nurse practitioner at the feeding clinic, for her quarterly checkup. The feeding clinic is part of the rehab program at CHKD (the local children's hospital) and is comprised of the rehab docs who supervise all of the therapists employed by the hospital - occupational, speech, and physical. Basically, kids with deficits in one or a combo of any of these areas requiring therapy are all funneled through the rehab clinic. The speech therapists in the feeding program are just one of many areas they oversee. Each time she visits the feeding clinic, Elaine watches Emma eat, asks me lots of questions, assesses her development, and performs a complete physical exam.
Emma's speech therapists pulled some strings and got her in to see Elaine last September, when her eating (or lack thereof) was at its worst and her reflux was at its peak. Since then, she has seen Elaine consistently every 3 months. Each time an appointment with Elaine looms on the horizon, I find myself increasingly nervous as the day approaches. In Emma's early days, fears not only that her development would be found "abnormal" but also that some other huge (and unforseen by me) problem would be discovered plagued me night and day. And if anyone would catch it, Elaine would. Completely professional, thorough, and extremely attentive to detail, Elaine's examinations are more complete than anyone else's. She has impressed (and frightened) me more than any other doctor Emma has seen simply because her assessment, in my mind, is the one that really matters. To me, Elaine's definition of "normal" - both in the amount of calories Emma should be eating as well as the amount of weight she should be gaining - has seemed like a near-impossible goal to achieve.
Turns out I was wrong.
She did it! She did it! Emma did it! Even though we've used the tube very sparingly over past 2 months, Emma has gained an appropriate amount of weight (approximately 7 grams a day - woo-hoo!). And her eating, which has gotten exponentially better since our last visit in April, really impressed Elaine. Not only does Emma eat a wide variety of table foods, she has mastered all the skills necessary to be a sucessful eater (tongue lateralization, anticipatory opening of the mouth, suck/swallow/breathe coordination and a littany of other technical skills I won't bore you with). Elaine was most impressed by our big girl and didn't even say a word about my not forcing Emma to drink Pediasure, a battle for which I was armed and ready to fight! And on top of all that, Emma passed her developmental exam with FLYING colors. She stacks blocks, puts things into containers, tries feeding herself with a spoon and walks around like it's her job. In every area but speech, Emma is now "normal" or "age-appropriate." Her speech, as I mentioned in an earlier post, was labeled "advanced." Emma speaks better than many 2-year-olds! Elaine actually called her the rehab program's "poster child" - MY child who a year ago screamed at the mere sight of a bottle filled with milk!
So what comes next? All that remains for Emma to lose her G tube is for her to demonstrate a good weight gain over the next 2-3 months without our having to resort to the tube for calories or hydration (our last "issue"). Therefore, Chris and I would really appreciate your prayers that Emma's willingness to drink more fluids would increase each day. While she is more than capable of downing a sippy cup full of milk, she's just not that into it. If Emma drinks 12 oz of anything in a day, she's having a VERY good day. Elaine told me that in the meantime, I should offer Emma as many "liquid" foods (pudding, yogurt, applesauce) as possible in an attempt to keep her hydrated without resorting to the tube. Emma's "proving time" begins today.
In the meantime, I think I'll go shout. Or jump up and down. Or cry like a baby, pretend that I'm a ballerina, bang on the piano, or sing Carrie Underwood's "So Small" at the top of my lungs. Oh - and DEFINITELY need to work on perfecting my happy dance. I'm pulling it out more and more these days!!!
