Our Changing Routine
This will probably be a bit long, as last week was a week full of doctors appointments. Seriously, we had one every day Monday - Thursday between Sienna and I. Just a bit exhausting.
Sienna checked out great at the pediatrician. It was the first appointment in maybe a year where she didn't cry when we walked in the door. She was happy and talkative with the nurse and doctor up until the fateful vaccination shot, but even then she recouped quickly. Her doctor was thrilled with her growth and development. She's a smarty that knows her colors, animals, takes care of her baby doll and has a healthy weight and height. She's perfect!
At the pediatrician, we were told her 25 pound weight was roughly in the 35th percentile, and her almost 34 inches was the 45th percentile. The pediatrician was happy and so were we...
Then we had clinic. It's funny how the same numbers for growth can be translated differently...using the same scale and growth curve.
Only three days later, she weighed in at 25.2 pounds. Clinic didn't take her height, and instead used the 34 inches measurement from the pediatrician. For some reason, clinic calculates her weight in the 26th percentile and height in 28th percentile. Their goal for Sienna (like most CF patients) is 50th percentile, minimum.
So on Monday we were feeling great about growth... and by Thursday we were feeling a bit deflated.
My how things change quickly (even without things changing!). Apparently Sienna was down to the 15th and 9th growth percentiles at her last clinic visit (which was never mentioned to us), so they do see the weight gain and growth over the past three months to be a good thing - they just want to bump it up even more. Like 20% more. I've read many posts and stories from other CF moms needing to supplement nutrition to enhance weight gain, but didn't see us crossing that bridge just yet. I mean, Sienna still has her chunky baby thighs! But alas, we left Thursday's appointment with a box of Ensure and Scandishake and told to work on weight gain. I'm sure I could easily gain that kind of weight, but our picky toddler that grazes food and turns down dinner? Doubtful. But we'll try! I guess it could be worse - at least she's gaining weight and not losing it. So for now, we'll offer her Ensure drinks as "juice" and mix in the Scandishake powder to her whole milk. We'll find ways to sneak extra fat and calories into her food through oils and dips. We'll encourage dessert but keep giving fruit. We will have to find the parenting balance of setting the right food behaviors versus giving in to her demands just so she'll eat...
Despite weight/height not being exactly where they want it, Sienna still looks great. We have an order for her annual x-ray and blood work, which we'll get completed sometime in July. CF is a tricky disease that can make things appear fine and healthy on the outside, but secretly be infiltrating beneath the surface. We can only hope to see no disease progression on the x-ray.
We are also stepping up our preventive therapy game. Right now, we do one vest session (airway clearance) a day as part of our "normal" routine. When sick, we add in a second vest session and use a nebulizer with albuterol/saline one to two times as needed. Sienna's doctor would like us to move to two vest sessions a day when healthy, as well as twice daily nebs with 5% saline (normal saline is less than 1%). We plan to slowly transition to this new routine as to not overwhelm her, and us (ya know, on top of a new baby sister). Since we are moving to an increased neb routine, we asked for a more powerful compressor to ensure treatments are being done as effectively/efficiently as possible. Out goes our cute pink bear ("nebby bear") compressor, and in comes the Pari Vios, which is at least more compact. We also ordered Si some cute fish masks meant for pediatric patients with hopes of her fighting treatment less.
So, let's see, on Thursday we left the appointment for our healthy CF child with:
Sienna checked out great at the pediatrician. It was the first appointment in maybe a year where she didn't cry when we walked in the door. She was happy and talkative with the nurse and doctor up until the fateful vaccination shot, but even then she recouped quickly. Her doctor was thrilled with her growth and development. She's a smarty that knows her colors, animals, takes care of her baby doll and has a healthy weight and height. She's perfect!
At the pediatrician, we were told her 25 pound weight was roughly in the 35th percentile, and her almost 34 inches was the 45th percentile. The pediatrician was happy and so were we...
Then we had clinic. It's funny how the same numbers for growth can be translated differently...using the same scale and growth curve.
Only three days later, she weighed in at 25.2 pounds. Clinic didn't take her height, and instead used the 34 inches measurement from the pediatrician. For some reason, clinic calculates her weight in the 26th percentile and height in 28th percentile. Their goal for Sienna (like most CF patients) is 50th percentile, minimum.
So on Monday we were feeling great about growth... and by Thursday we were feeling a bit deflated.
My how things change quickly (even without things changing!). Apparently Sienna was down to the 15th and 9th growth percentiles at her last clinic visit (which was never mentioned to us), so they do see the weight gain and growth over the past three months to be a good thing - they just want to bump it up even more. Like 20% more. I've read many posts and stories from other CF moms needing to supplement nutrition to enhance weight gain, but didn't see us crossing that bridge just yet. I mean, Sienna still has her chunky baby thighs! But alas, we left Thursday's appointment with a box of Ensure and Scandishake and told to work on weight gain. I'm sure I could easily gain that kind of weight, but our picky toddler that grazes food and turns down dinner? Doubtful. But we'll try! I guess it could be worse - at least she's gaining weight and not losing it. So for now, we'll offer her Ensure drinks as "juice" and mix in the Scandishake powder to her whole milk. We'll find ways to sneak extra fat and calories into her food through oils and dips. We'll encourage dessert but keep giving fruit. We will have to find the parenting balance of setting the right food behaviors versus giving in to her demands just so she'll eat...
Despite weight/height not being exactly where they want it, Sienna still looks great. We have an order for her annual x-ray and blood work, which we'll get completed sometime in July. CF is a tricky disease that can make things appear fine and healthy on the outside, but secretly be infiltrating beneath the surface. We can only hope to see no disease progression on the x-ray.
We are also stepping up our preventive therapy game. Right now, we do one vest session (airway clearance) a day as part of our "normal" routine. When sick, we add in a second vest session and use a nebulizer with albuterol/saline one to two times as needed. Sienna's doctor would like us to move to two vest sessions a day when healthy, as well as twice daily nebs with 5% saline (normal saline is less than 1%). We plan to slowly transition to this new routine as to not overwhelm her, and us (ya know, on top of a new baby sister). Since we are moving to an increased neb routine, we asked for a more powerful compressor to ensure treatments are being done as effectively/efficiently as possible. Out goes our cute pink bear ("nebby bear") compressor, and in comes the Pari Vios, which is at least more compact. We also ordered Si some cute fish masks meant for pediatric patients with hopes of her fighting treatment less.
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| New nebulizer with cup and mask |
So, let's see, on Thursday we left the appointment for our healthy CF child with:
- a box of nutrition supplements
- a new nebulizer compressor
- a prescription for a new medicine to be used twice daily (5% saline)
- instructions to change our preventative routine: now twice daily airway clearance and breathing treatments (when healthy)
- an order for an x-ray
- an order for blood work (mainly for vitamin levels)
- a bit of stress...
Sigh. I can't imagine an appointment for someone not doing as well. At least we know these changes to our routine will become our new "normal." Until it changes again...
And even after this past week, we know she's still perfect.
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