So a nutritionist came in today and is worried about Steven's weight. This is a long story but you can imagine that we are having a hard time keeping his weight up. The nausea with the cisplatin lasts a long time and he has basically gone on strike agaainst hospital food. Then when he has mouth sores, he eats very little. I have been feeling good about his weight this week and was sure he would have at least maintained it from a few weeks ago. Last week he ate things like a full lasagna dinner with French bread and then two servings of brownie with ice cream and homemade fudge sauce or sausage and a waffle and whole milk for breakfast. I make him a smoothie everyday with ice cream, fruit, full fat yogurt, whole milk and carnation instant breakfast. Granted, he won't usually finish the smoothie, but I do try. A very big problem is that chemo is killing his taste for some of his favorite foods like peanut butter and hamburgers. I am certainly trying, but maybe I've relaxed a little too much.
Maybe that is why I felt a little offended when the nutritionist asked me what was going on and if I knew about calorie packing. Steven tried to take a stand. When she brought up his weight loss he said, "Well, I did just lose a big part of my knee, that must have been some of my weight.". She countered with the weight of the cast, and he couldn't argue that one. We talked about some ideas and she asked me if he liked bagels. He did, but who knows now. Let me tell you a story about last night to prove that I will go to great lengths to feed my child.
At 4.30 yesterday, he was still getting hydrated before chemo started and he was hungry. All he wanted was a blueberry bagel and he refused to eat one from the hospital. I looked up Einstiens and drove to it. I got there at 5:05. It was closed. A customer on the patio thought the one by the university might be open longer, so I headed there. It was closed too. I was now in 5:00 traffic looking for a bagel. I went to a bakery and they were all out. I spent $10 on other things to try to tempt him. I headed back to the hospital and decided to buy a bagel from the hospital cafeteria just in case. Guess which one he ate? The hospital bagel. That was at 6:00 and by 8:00 he was barfing the bagel. Now we have strengthened his hospital food association and possibly ruined bagels for him. And I feel like crying just thinking about the whole thing.
And I have got to go hunt down a Wendy's 10 peice chicken nugget for him now. You may argue that I am spoiling him and maybe I am. But at least I can look the nutritionist in the eye and honestly say I am doing my very best.
Does the nutritionist know about "shut up" packing?
ReplyDeleteSonja, Don't let the dietician get to you...you are doing the best you can and then some! and as his mother you will be inspired. We will specifically pray that Steven will be able to gain weight and that you will realize just what a super mom you are!!!! If we hear of any good "fat packer" meals we will send them your way. we love you and your family!
ReplyDeleteYou definitely can't feel bad about what you're doing. I can't imagine how stressed you must feel. I stress out about Tyler's weight and, well, let's just say there's really nothing to back up my anxiety.
ReplyDeleteOhhh, I could get on a soap box about this one but I will try to contain myself. You do not need one more thing to feel bad about, stress about or worry about. The poor kid is sick half the week, what does she expect and you truly are doing all you can! Don't get down over this one.
ReplyDeleteI have had similar experiences with my kids and had to calorie pack. I have used a product called Scandishake from Scandipharm Pharmacy, an online pharmacy. They have high calorie shakes but they also have a product like parmesan cheese that sprinkles on food and adds a whopping amount of calories. I will send you some links and other ideas. I will also check with my e mail support group on other ideas. Another thing I do with my kids because they fail to thrive is, when I make a peanut butter sandwich I spread a generous layer of butter, then nutella, then peanut butter. It's yummy and full of calories. Peanuts, candied peanuts are also full of calories and but don't make them feel full and bloated so fast but might be hard with the mouth sores. Sorry Sonja, this is so hard. I will send you all the resources I can. You are doing the BEST job ever! Remember God chose YOU to be Steven's mom because you are the best mom for Steven!! Don't forget that! Hang in there.
Kathy
Amen! Tim refuses to eat the hospital food, and when I make a run down to 400 south for whatever he is craving, it just ends up in the barf bucket. Ug, it is frustrating, I know your pain! And don't sweat the nutritionist too much. She gave us the scare with a feeding tube and steroids awhile back. I just said that we would feed him at home and see how things went. She hasn't bothered us since:) Hang in there. We need to get Tim and Steven together. People are thinking Tim is Steven, so they really should meet and get to know each other:) Hang in there!!
ReplyDeleteThis sounds like a job for uncle Rob!
ReplyDeleteIts so easy for a nutritionist to tell you how you are "supposed" to feed your child, but if they were actually in your shoes they would realize just how hard it is. Their bodies are put through so much everyday, its amazing that they keep anything down. You are a wonderful mother and I know you are doing your very best. Steven is so lucky to have you! I have a 5 year old (Skyler) with Leukemia and we are having the same problem right now. I try so hard to feed him but everything tastes yucky to him because of the chemo and when he does eat he throws it right back up. You guys are always in my thoughts and prayers!
ReplyDeleteCrystal and Skyler
crystalandskyler.blogspot.com
Amanda-- we have the same thing here. I have had a couple of people insist that they have met Steven and then I explain about Tim and after a bit they are convinced. They really do need to meet.
ReplyDeleteI'm going to pipe in that the Nutritionists only know what their text books tell them. They do not live your live or love your child. We're going rounds with Ian right now-and I just want to start crying in their office and say "okay, lets trade, you do my job for an hour and see if you can get him to eat. I'll do your job and tell people to eat. Then we'll talk "calorie packing." Good luck! If you find a magic wand I would love to split it with you.
ReplyDeleteSonja, you're doing an amazing job. You can spoil Steven all you want to and then some. Just do the best you can for now. Human bodies have an amazing way of surviving low calorie intake. There is thousands of years of history to support that. When this cancer thing is over Steven will eat like he did before, gain weight and live a long, healthy life.
ReplyDeleteSonja, Sorry to bug you again...Here are some links for you of the Scandishakes I commented about earlier. They pack 600 cal./8oz. I have used them myself, not just for my kids and they do not have the metallic taste that ensure or pedisure has. They are awesome if you mix them with a whole milk frozen custard and that would add even more calories.
ReplyDeletehttp://www.familyotc.com/Axcan-Scandishake-Chocolate-Mix-4-x-3oz-p/cd2522449.htm
The same company has another product called Scandical- 1 Tablespoon has 35 calories and you can sprinkle it on any food at all, it has no flavor. Both products are very helpful in gaining weight as I have personal experience of that. Here's the link for Scandical. http://store.axcanscandipharm.com/home.php?cat=3
If these links don't work, google 'Scandishakes' and 'Scandical'. and it will bring up a ton of places to buy it. It's fairly inexpensive. The company specializes in weight gain for Cystic Fibrosis, HIV/Aids, Cancer and SDS patients.
Carnation Instant Breakfast is also a good one. Any kind of nut is full of good fat and calories. Even candied peanuts- just keep a bowl out for snacking and such. I think I already mentioned that. If I remember anymore tricks I will pass them along. At one point, when my middle child was 2 years old, before his diagnosis, I was accused of not feeding him by a dietician. When I logged everything I fed him for two weeks, he averaged 2800 cal./day and still weighed only 15 lbs. My youngest is 13 and is barely over 60 lbs. He is sick alot too. Steven will be okay...he will put the weight on naturally as his body begins to feel better. I'm sorry this adds to your stress...not fair, not fun. You could have a lot of fun with this though...lots of buttered popcorn and movie nights...chocolate cake for breakfast...your kids may vote you MOTHER OF THE YEAR!!! That would be awesome! Hang in there....
So frustrating. Can't they just say 'keep trying' tactfully?
ReplyDeleteThat sounds rough. I agree with everyone else-you ARE doing your best so you shouldn't guilt yourself.
ReplyDeleteOne of my first jobs post internship was to teach the nutrition classes to pregnant women. I said all the "right" things and then I got pregnant. I wanted to go back, apologize, give each woman a hug and say "I didn't get it, but I do now" I once had a Dr. tell me -- trust the mom, she will know what to do. I think that if they knew you they would be in awe of what you and Steven are doing and accomplishing.
ReplyDeleteWell those specialists do know your child better than you, right? And they also know how to raise your child better????? Next time tell her that's she's in charge of his meals and when Steven does the same as always with weight you can punch her......ok so MAYBE that's a little too harsh but it's so frustrating when someone tells you that you aren't good enough when you and Steven know that you are above and beyond a great mother who is doing great things. Ok I'm off my soap box now :)
ReplyDeleteCast vs leg, flesh, and bone? The cast isn't THAT heavy! Steven had a great point. He probably lost just enough leg to show up in the nutritionist's computer stats as alarming. No big deal. I think the real doctors' aren't that concerned.
ReplyDeleteLorraine has been trying to get her children with CF to eat since their diagnosis and nothing is more frustrating. When I am with them I am really good at packing calories into their food ie heavy whipping cream and butter on everything, tons of salt added to about every bite, peanut butter and whipped cream on apples. Nothing really works and I end up eating all the left overs and packing the calories on my already opulent body. The more I try to get them to eat, the more I put in my own mouth. I hope you don't have the same problem.
ReplyDeleteAunt Kathy