We have been instructed to increase his calorie intake by 11 percent. Why 11%, I don't know? I thought it was kind of funny actually. Why not 10% or 15%? I have found that doctors and nutritionists are very exact and precise with special kiddos like Gavin! For some reason I find this to be funny. I guess because I'm not a person that reads the directions. I just add a little bit of this and try to figure it out on my own. Having Gavin has made me become very exact in many ways. Maybe this is a good thing, but I don't like it.
Gavin is still getting the same amount of fluid that he was getting, but he is getting more of the food part of his intake and less of the water part. He struggles with getting too much fluid into his stomach and has gagging issues, so increased volume wasn't possible. Since he receives all of his food/water through his G-tube, it works out that he is still getting the same amount of liquid each day. It's just in a different form.
Am I boring you? This is what I mean by having to be more exact, since Gavin has come along. Some of you probably understand and are interested, the rest of you are probably yawning. :)
Anyway, hopefully this works for Gavin. He doesn't look skinny, especially in pictures, but that is because his face looks full and he is short for his age. (Most people with Down syndrome are on the shorter side.) If you saw him in his birthday suit, you would see just how skinny he is! His tummy has NO extra fat. You can see and feel his ribs. And, his legs are SKINNY! So, Bring on those calories! I wish that I had this problem!!!
"Then the King will say to those on His right hand, 'Come, you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world; for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in.'" Matthew 25:34-35
10 comments:
Look at my sweet boy. did they take you up to 24 or 26 cals? Does he get pediasure? thats what Jax used to be on before the ketogenic diet.
We were having this problem with Marissa around this time last year, but it was because of her throwing up. We had a registered dietician AND a feeding specialist on board to try to get things right. We tried every formula under the sun, including the most expensive ones (and insurance wasn't paying!). We finally (don't really know how) came up with the right volume and the right formula ~ Pediasure! Who knew? She finally caught up on the growth chart.
I pray you can find the right combination for Gavin. Losing weight is definitely not good. I think the 11% is funny too. Gotta be really precise, I guess. :)
On a side note, I wanted to let you know how cool I think it is that you end every post with scripture. I love that!!
Alicia
We are shadowing your life right now. :) The dietician is working on a plan to increase Peanut's calories without increasing her volume. She is the same as Gavin, any extra fluid in the stomach makes her miserable.
I love that we have this blog world to meet on and feel connected on!
Alex has also been losing weight. Hope your plan works!
This numbers thing is hard work!
I sure wish I could up my calories by 11%
:)
We'll be praying for sweet Gavin!
Your post, and then the comments about others losing wt is making me nervous. Mal lost wt, and is doing OK, and I was feeing pretty unpressured about it. (Especially because now we don't have the "Eat, eat, to close the VSD" song going in our heads.) And because she is acting energetic, etc. But I do remember her pedi saying she just doesnt' want her to lose ground, so now I'm going to worry.
Thanks for that. :)
connie
Looks perfect to me!!I am sure with some tweeking with calories he will gain that back.Maybe he has just had a little growth spurt in his height.These dietician are funny birds.Especially in the hospital.We have them hounding us each of Zoey's rounds to change her formula.I say no,they say more calories.I say no again and they continue to hound.I say:my child is fighting cancer,has gained 4 pounds(thanks to the g-tube) and I won't be changing anything now.I think they got the hint.Take care and don't worry.He will put that right back on ... when he's ready.
That's my dream: a medical person telling me I need MORE calories. You are as adorable as ever, Gavin.
Ok, first he he sooo stinking cute. Second, I would happily volunteer for the fat donation for Gavin, Lillian and all other needy skinny babies.
I totally understand the weight issues. We deal with it constantly. UGH.
Thank you for your constant encouragement and prayer!
That is interesting. I think they say an accurate percentage because they can calculate how much and how long it will take to get Gavin back on his growth curve, or where they want him to be. The way they can crunch those numbers...makes my head spin!
And I get what you mean. About that he doesn't look skinny, but if you saw what was under his shirt...you would see. I've seen that with TJ too. He's doing ok now, but when I see his ribs it worries me. I'm the opposite of skinny- so I'm very sensitive to it. Can't we control anything????
So, bring on those calories! Good Luck!
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