But her nutritionist said that she grew in height two centimeters. So, that's good. But, I'm not happy about her losing weight. A pound doesn't sound like much. But, for her - it is a lot. And with all the feeding that we're giving her - with some calorie boosting (adding whole milk, heavy cream, cheese, butter, syrup, mayo, etc. to her food) the fact that she lost weight isn't comforting.
One of my questions for the nutritionist when we went into the appointment was if she was ready to ditch the Pediasure and make the switch to whole milk. Instead, she needs to go to an even stronger Pediasure! Total Bummer. She's just burning way more calories than I can give her. She's very active - so that's good. But, I also know that her breathing and her heart beating burns more calories than the average kid. Ahhh, another one of those friendly reminders that my kid has medical challenges.
She weighs 30 pounds. She is 37.4 inches tall. Our daily volume goal (the total amount of food plus Pediasure per day) was 35 ounces, which she achieved most of the time (I'm guessing 8 out of 10 days). Now, her goal is 40 ounces - with the boosted Pediasure and I am going to have to be more diligent with calorie boosting ALL her food. I've been boosting - but haven't been measuring it exactly. I just eye-ball it when I make her food by adding a little bit of this, a little bit of that, etc.
I know she needs the extra calories, because there is no way I could increase her volume to match what she would need in a day. But, some of the calorie boosters just make me sick when I think about putting it in her body - like Parkay liquid margarine. Ugh. I'm really sorry if you're a fan - but something about that totally grosses me out. Just like it totally grosses me out to puree eggs and tuna fish. Not necessarily together. I've done eggs - ICK! But tuna fish??? Um, no. Can't do it.
So, I have a list of other calorie boosters (heavy cream, sweetened condensed milk, powdered milk, salad dressings, sour cream, coconut cream, oils, etc.) that I need to go and get and keep in the house to add to all of her food. And then I just have to hope I don't clog all of her arteries and make her heart work even harder than it already is. Her nutritionist said she will be fine with calorie boosting for a few years without doing damage. Let's hope so. But that's just the thing in the medical field... everything is a constant balancing act. What's good for one body part is bad for another.
I was feeling pretty bummed about her losing weight when we left the appointment. But in the car on the way to school Brandy reminded me of all the changes since her last nutrition appointment:
- She's eating ALL her food BY MOUTH! HELLO!!! That's amazing!!!!
- She's walking more than ever - like from the bus to the classroom.
- She plays on the playground at school most days.
- She's taking gymnastics once a week.
- She's in physical therapy once a week.
That makes me feel better. She's increased her activity like crazy, which is GREAT! Now I just need to get ahead of her in the calorie department.
So, I'll leave you with some recent pics of my skinny girl.
You can see how crooked she is in this photo:
As always, thanks for reading!
~Christy
4 comments:
Chin up, Mom, she and you are doing awesome! I agree with Brandy--look at all she's accomplishing on a daily basis. She's making great strides and burning those calories as she goes... Parkay, here she comes! And I don't blame you on the tuna fish!!
Christy, she doesn't look overly thin to me. I think with all that increased activity and upward growth that being down a pound isn't too bad. Transitioning to 100% oral feedings is HUGE. Something to be very proud of. Personally I'd opt for melted butter, half and half or oil over liquid Parkay. It's a bit of a bummer about the formula. Since it's like a meal in itself it seems like it'd be hard to get her to increase the quantity of purees she will eat. But you'll get there in time. For now just celebrate that she is eating!
Christy -
Kate went through the same thing. I was terrified to ditch the one last tube feeding because I wasn't confident she'd be able to maintain, nevermind gain weight on her own! It took time. She stopped tube feeding in Aug and at her well check in Oct, she'd lost weight. I panicked, but we maintained -- still drinking Pediatsure, still adding heavy cream or butter to almost EVERTHING she ate. By the following year (so 14mos completely tube free) she'd gained 5lbs!! She is still skinny (37.5inches and 32 lbs ) but her ped thinks she's fine and we haven't added anything to her food in over a year. He even told me to lay off and just let her eat what's appropriate for her age - not try to supplement. It's a tough road but oh so worth it!! Best of luck!!
Im there with you right now!! I can't believe the stuff I put into Elizabeth's food to calorie boost it. Have they mentioned doing carnation instant breakfast in the milk she drinks to get her off the pediasure. This is what they wanted me to do with Elizabeth, but her tummy didn't like the carnation instant breakfast. Also we use the stupid parkay liquid butter and half and half in everything, but fruit. In that we add the coconut milk or vegtable oil. It makes me cringe everytime!!! Also I add shredded cheese to anything I think it will taste good with. The sugar alone in things makes me wonder if this causes Elizabeth's hyperactivity. Have faith though, we have been doing it for over a yr and until the last month or so Elizabeth wasn't gaining any weight, but I'm happy to say that as of last week, we no longer supplement with the tube at night! It's hard, but you're doing a great job!!
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