Welcome to Bizarro World

So, Hope had her checkup with the endocrinologist today.  She has not gained any weight since her last visit.  She grew an an inch, but no weight gain.  On top of that, at her last endo visit, she had only gained a pound or two from the visit prior.  Long story short, she’s not gaining weight.  She is 15 months old and 17lbs.

To be sure, she is more active, but still.  This is so frustrating.

I didn’t go to the appointment, Tammy took her.  After the doctor left, he sent in the nutritionist, who gave Tammy a packet on “Economical High Calorie Foods.”

Some of the tips are things we’ve already been doing, like putting peanut-butter in stuff.  But poor Hope is just so bored with her diet, and I don’t blame her.  We’ve tried so hard to get her enough calories and to do it with fairly healthy foods.  Unfortunately, Hope is kind of a picky eater, still only has two bottom teeth — making chewing hard, and STILL isn’t drinking very well out of the sippy cup.  If we could just get her to drink, I could make smoothies — Grace lived off of those after she weaned, to this day she prefers a liquid breakfast.

Anyway, I’m frustrated.

So I went to the store and walked aisle-by-aisle looking for the highest calories things I could find and then throwing them in the cart by the bunch.  I tried for variety of flavor and texture, finger foods, soft foods (for sensitive gums and no teeth).

I got pudding, lots of it — because we can make it with whole milk.  I got sauces galore–alfredo, ranch, gravy, chocolate, to put on top of rice and pasta.  Lots of cheese, cheese singles, Velveeta.  The packet recommended using Whipping Cream and Half-and-Half so I got those, and threw in a couple of cans of sweetened-condensed-milk for good measure.  Chef-Boyardee, Stove-Top Stuffing, Cream of Chicken Soup, Oyster Crackers, Chick’n’Biscuits, Tater Tots, Twinkies, Tampico, Mini Marshmallows etc…..

Now obviously we’re not going to make her a dinner of tater-tots alfredo al forno (at least not at first), but we’ve stocked up on a lot of options to diversify her menu a bit and hopefully get her to eat a bigger variety of foods and textures.

Bottom line, all the mashed bananas, oatmeal, and organic whole-milk yogurt in the world are not working; and more than just being frustrated, I’m getting a little scared.  So I’ve thrown in the towel I guess, I spent $150 on a crap load of junk food today.  I had to rearrange the whole pantry just to fit it in (and to hide it as best as I could, since the last thing I need is to have Grace pestering me for Twinkies — or seeing the Twinkies myself for that matter).

Of course, the worst of it is that I simply cannot get over the unreality of actually being in this position — of actually needing to buy this kind of food to feed my baby…for now.

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8 Responses to Welcome to Bizarro World

  1. Christa says:

    Man, looks like a midnight munchie dream. Here’s to hoping cream, cheese, and carbs help. It is the Portuguese diet. Gillis and I could teach you a thing or two.

  2. Kari says:

    You should make her a cheesecake.

  3. Papa says:

    I second the cheesecake. Don’t forget to invite me.

  4. Jeannette says:

    Wow. I am RIGHT there with you. Alden has such a limited diet and wasn’t gaining and now continues to gain very little. (I cringe when people tell me what “a skinny little guy” I have because I am so worried about the day that switch will flip).

    He has his 2 year will visit in August so I’m curious to see what the news will be.

    Our ped. had suggested putting olive oil in all of his table food to help with weight gain. It did help but I found it so gross – who wants olive oil mixed into their bananas?

    Alden has now begun to reject all of our standbys: whole milk cottage cheese, avacados, meatballs, yogurt. You name it. I am at a loss for what to feed him and also facing the same issue of disbelief over the things we give him to help g.a.i.n. weight.

    Ugh and hugs.

  5. Angela says:

    After our appt with the Endo this month we have to be monitored more often on his weight to make sure its ok. Isaac grew 3 inches in 3 months, but we gained maybe 1 pound. So we are on a weight gain mission ourselves.

    Someone recommended we do coconut milk and pineapple smoothies. Apparently coconut milk is high in calories. And lord knows we are still most successful with the bottle because the sippy cup normally ends in a full on bath.

    I’m sorry I sent you such a stress laden email about feeding and all. Its a crazy unreal world we live in where we have to fatten our kids up for now, only to worry about it for the rest of our lives that they will fatten up!!

  6. Lisa says:

    Sweetheart, I relate to the predicament in so many ways – will she drink thru a straw? We went thru hell when our son had rotavirus at 9 months and completely refused both bottle and sippy cup – days on IV at hospital and desperate to get him to take something by mouth – Hubby got a thick milkshake and started feeding it to him at the end of the straw – holding his finger over the end and taking some into the straw and once the little guy got the flavor of it he was sucking up the shake thru the straw. My child has a an extra chromosome 15 – not exactly like PWS but the syndromes are related – so I know what it’s like to end up in Holland.

  7. Jen says:

    I am so looking forward to Hope being able to drink through a straw so that I can do the smoothie thing — this whole “finish your pie or you don’t get any peas-thing is a little too much.”

  8. Snarky Mom says:

    I’m just now catching up on my blog reading and wanted to comment on this post. We had this same problem with our PWS son. He was one and weighed 12 pounds. He was almost 5 pounds at birth. It was a looooooong year.

    One thing we did to help him gain weight was use Duo-cal powder on his hot food and in his milk. He was tube fed still at that point so we just mixed it in with his formula. We used the Duo-cal for well over a year and it did work. It’s prescription and NOT cheap but it might be worth looking into.

    We had him on growth hormone shots from the time he was 6 months old and now, 7 years later, I can tell you that it has made almost no noticible difference in his height/weight. It gave him a little more energy and helped slightly with the hypotonia but other than that- nada. We stopped the shots almost a year ago to see if there was any difference. Nothing. He’s gaining at the same rate, height is at the same rate. I’m disappointed but it could be worse. He is 7 now, weighs 41 pounds and is 42 inches tall. Far from what you would expect from a typical PWS kid, that’s for sure.

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