I've been a terrible blogger. I freely (but shamefully) admit that. It seems strange that life has slowed so much in the past few weeks and yet I've had LESS time to write than I did when we were in the thick of the 2010 Apocalypse. New baby, new diagnosis, new places to live, new jobs...
Things finally slowed down and we aren't running on pure adrenaline. A routine is emerging from the chaos, school is in session, the weeks are rolling in and out like the tides. I suddenly find myself looking around and saying "what now?" Coming down off of a months-long adrenaline binge made me restless. I also began to feel...maybe a wee bit depressed? When Jackson was diagnosed the public outpouring was simply astounding. Astonishing. Amazing. You name it, I was constantly overwhelmed with grace and gratitude and it bubbled over and spilled all around me. I found it relatively easy to be positive even when I was sad. When the adrenaline began to wane, I feared the loss of my new enthusiasm. Suddenly every moment wasn't larger than life and I didn't know quite what to do with it.
It was a case of early onset apathy. The sure cure? A trip to the CF clinic. A trip to a children's hospital, as I've said before, encapsulates the best and the worst of life's experiences. It takes very little time in the waiting room for a body to realize just how lucky they are, and today was no exception. It's also a brief trip down memory lane, to the time only five months ago, when we met my Mother in law in the waiting room, and I explained how there must have been a mistake with the screening. A glance at the tubby little man in the car seat at my feet send tears bubbling up and trips the 'grateful and gracious' trigger all over again. It's impossible to believe I could be so accustomed to this extraordinary life.
My first indication of the caliber of this clinic visit came as soon as we weighed in. J was met with a chorus from the nurses, "we don't even recognize that baby, remember when he first came in how skinny he was?" "he sure doesn't look like a CF baby!". And sure enough, the scale doesn't lie. The anticipation for the little red lights to give up a number was unbearable, although J handled it by eating his feet. When they finally flickered their verdict, I was ready with my kilograms to ounces converter. Eighteen pounds, five and one half ounces. Then length...twenty eight inches!! His weight has maintained at the 65-70th percentile, and his height had rocketed up to the 95th. I want to turn his growth charts into a diamond studded platinum charm and wear it around my neck for the whole world to see.
The rest of the visit was about on par with the first part. 98% o2 SATS, crystal clear breath sounds, NO NEW MEDS, but a spankin' new nebulizer that works in half the time of Em's old clunker hand me down... We are increasiing his salt intake since he is such a sweaty little dude. He's been leaving salt rings on his crib sheets, and a blood draw confirmed that his sodium levels were just a tad on the low side, so we're doubling up for a while, at least until the weather cools down and sweating is less of an issue. We discussed whether it would behoove us to switch to an ultrasonic nebulizer, but since Albuterol and Pulmozyme are currently our only inhaled meds, we opted for an updated pneumatic for the time being. Thanks to Fatboy for a load of useful information on the topic! There's really nothing more I could ask from a clinic visit. It certainly put the shine back on things.
Photos in this post are from a family reunion last month. Shame on me for not sharing them sooner!
Next post: 6 Months of Very Merry Milestones
Things finally slowed down and we aren't running on pure adrenaline. A routine is emerging from the chaos, school is in session, the weeks are rolling in and out like the tides. I suddenly find myself looking around and saying "what now?" Coming down off of a months-long adrenaline binge made me restless. I also began to feel...maybe a wee bit depressed? When Jackson was diagnosed the public outpouring was simply astounding. Astonishing. Amazing. You name it, I was constantly overwhelmed with grace and gratitude and it bubbled over and spilled all around me. I found it relatively easy to be positive even when I was sad. When the adrenaline began to wane, I feared the loss of my new enthusiasm. Suddenly every moment wasn't larger than life and I didn't know quite what to do with it.
It was a case of early onset apathy. The sure cure? A trip to the CF clinic. A trip to a children's hospital, as I've said before, encapsulates the best and the worst of life's experiences. It takes very little time in the waiting room for a body to realize just how lucky they are, and today was no exception. It's also a brief trip down memory lane, to the time only five months ago, when we met my Mother in law in the waiting room, and I explained how there must have been a mistake with the screening. A glance at the tubby little man in the car seat at my feet send tears bubbling up and trips the 'grateful and gracious' trigger all over again. It's impossible to believe I could be so accustomed to this extraordinary life.
My first indication of the caliber of this clinic visit came as soon as we weighed in. J was met with a chorus from the nurses, "we don't even recognize that baby, remember when he first came in how skinny he was?" "he sure doesn't look like a CF baby!". And sure enough, the scale doesn't lie. The anticipation for the little red lights to give up a number was unbearable, although J handled it by eating his feet. When they finally flickered their verdict, I was ready with my kilograms to ounces converter. Eighteen pounds, five and one half ounces. Then length...twenty eight inches!! His weight has maintained at the 65-70th percentile, and his height had rocketed up to the 95th. I want to turn his growth charts into a diamond studded platinum charm and wear it around my neck for the whole world to see.
The rest of the visit was about on par with the first part. 98% o2 SATS, crystal clear breath sounds, NO NEW MEDS, but a spankin' new nebulizer that works in half the time of Em's old clunker hand me down... We are increasiing his salt intake since he is such a sweaty little dude. He's been leaving salt rings on his crib sheets, and a blood draw confirmed that his sodium levels were just a tad on the low side, so we're doubling up for a while, at least until the weather cools down and sweating is less of an issue. We discussed whether it would behoove us to switch to an ultrasonic nebulizer, but since Albuterol and Pulmozyme are currently our only inhaled meds, we opted for an updated pneumatic for the time being. Thanks to Fatboy for a load of useful information on the topic! There's really nothing more I could ask from a clinic visit. It certainly put the shine back on things.
Photos in this post are from a family reunion last month. Shame on me for not sharing them sooner!
Next post: 6 Months of Very Merry Milestones
Thanks for the props. Yeah, I hadn't thought of that being true for those nebs, too, but I do remember them getting gummed up from 7%, too. Great report with your own little fatboy.
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