11

So…today is Hope’s 11-month birthday.  One more to the big o-n-e.

Yesterday we went to our Prader-Willi Clinic with Dr. Cassidy.  Everybody is pleased and amazed with Hope’s progress.  Her head control is great, her trunk control is getting better and better everyday, she’s alert and awake all the time, she looks great.  The only real concern was that she only gained half or her projected weight gain from the last time we met.  The doctor didn’t seem quite as concerned as the nutritionist, and I am concerned but not concerned.  For one thing, Hope’s weight to height ratio is normal–low–but normal.  She’s growing along her curve, she is 3rd percentile in weight and 45th in height — as a point of reference, Grace was 5th in weight and 75th in height.  Typically, anything from 3rd percentile on down sends up red flags for failure to thrive issues.

We’ve definitely been going through a period of adjustment with Hope and her diet recently.  She’s not very cooperative with the bottle at the moment, she’ll take a couple here and there but she’s made it clear that she’s no longer satisfied with a liquid diet.  So we have been giving her solids almost exclusively for the past three weeks, and hoping to convince Hope to take at least a bottle or two a day, and then practice on the sippy between meals.  The problem we’ve run into is that because Hope is not quite ready for finger foods and such, plus she is a really slow eater, and she’s still pretty much limited to pureed foods — it’s hard to get her to eat the quantities she needs to meet her caloric goals (700-800 calories/day).  Now, if we’d just run Cheetos through the food mill, we could probably get the calories in her with no problem — but we’re aiming a little higher nutritionally.  Hope needs protein and, lucky for her, she needs fat–but we also want her to have variety, and to make sure that she’s getting a lot of fluid from her foods also since she isn’t cooperating with the liquids right now.

…and she won’t really take more than 1/4 to 1/3 cup at a time…

…and it takes her thirty minutes (at least) to eat, and neither of us want to spend all day in the kitchen…

…and we have Grace to consider, and OT, PT, EI and BC…

So…Hope’s menu is shaping up to look something like this:

Breakfast, Lunch, & Dinner: 1/4 c. ricotta cheese, 1/8 c. pureed fruit/vegetable (sweet potato is the most nutritionally dense), 1 TBLSP butter (up from 1/2 TBLSP).  That should be in the 200 calorie range, maybe a little higher.

Between meals we’ve got to work on pushing the fluids–whole milk, diluted juice (we got permission to add the juice, mainly for the calories).  I refuse to give juice through a bottle though, only the sippy…so we’ve got a ways to go on that one.

And then I’v got a few tricks up my sleeve…for instance, Hope loves tapioca…there is always room for tapioca, even if she doesn’t finish her meal I can always squeeze a few calorie-laden spoonfuls of tapioca in her mouth.  The nutritionist suggested Jello as an easy alternative to milk and juice, since it’s just jelled liquid it counts as a fluid…and even has protein.  I’ve got to make another trip to TJ’s soon to stock up on good, nutrient-rich juice.  If you haven’t figured it out by now, I don’t do the commercial baby foods. 

Well, that’s it for tonight…it’s 11 past 11 and I am totally beat.  One more bottle, one shot, and I’m crashing.

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3 Responses to 11

  1. Mary says:

    Hi Jen,
    I’m so glad you are out there writing about what it’s like to have a kid with PWS. It sounds like Hope is doing really well! We took Oscar (8) to see Dr. Cassidy when he was younger and it was uplifting. I need to take him again. Unlike Hope, Oscar started gaining weight quickly when he was about 4-6 months. That was scary to me. GH helped and he’s pretty skinny now. A friend of mine though had a kid with PWS on the low end of the weight spectrum and we talked a lot about food options to help her gain weight. I did not like the suggestions of our local nutritionist. Have you thought about avocado and salmon as nutrient rich, highly caloric soft foods? I also used to make yogurt smoothies (banana, plain yogurt, apple juice, frozen berries) with nuts. The nuts are also caloric, have some protein, and good fats. They get chopped up quite nicely so the kids never knew they were in there. Maybe Hope would go for that? If she doesn’t like super cold things you could leave out the frozen berries. I hope you don’t mind the suggestions…it really does seem like yesterday that we were there, trying to make sure every bite counted.
    GOod luck! mary

  2. Jen says:

    Hi Mary!
    I’ve got a bag of avocados right now, I just ran them on the FDA’s calorie counter — I had NO idea how many calories they had! I knew they had good fats, but getting sufficient calories is really my biggest task right now — thank you! As for the salmon, I’m wondering how you prepared it? I gave Hope some tilapia a couple of weeks ago and she wasn’t a fan — I think it was the texture, once it was run through the food mill it was kind of mealy. I am eagerly anticipating the smoothie stage, I did that for my oldest and to this day she only wants liquid breakfast most of the time. It will be a big relief when Hope can master the smoothie straw. Thanks so much for the suggestions and feel free to send more any time!

  3. Mary says:

    Hi Jen — I try to forget how many calories avocados have, lol!
    I think we grilled or sauteed the salmon, usually with soy vay marinade. I didn’t have a food mill, so I just gave Oscar very small flakes. For the smoothies, it took him forever to be able to use a straw, so I think I spoon fed him. (When he finally could use one it was great oral-motor work) You could even sneak some fish oil into her portion to up the calories and nutritional content.
    take care!

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