Riley had been eating the past two days. He wasn't eating much, but a little bit was a big improvement over not eating at all. But today, all bets were off. Breakfast: a couple of bites of tofu left over from dinner the night before. Lunch: nothing. Dinner: five bites of cottage cheese.
His chylothorax has him on a restricted diet which allows him 6.6 grams of fat per day. This is very frustrating because he sometimes asks for food--food that he isn't allowed to eat. He has asked for pizza a couple of times. He's also asked for cheddar cheese. Part of his lunch today was cooked carrots. When I told him there were carrots (he probably thought they were raw), he asked for bleu cheese to dunk them in.
Can't say I blame him for not being interested in much of what the kitchen brings to him. Scoop of white rice. Pile of overcooked carrots. No salt or butter on either. Side of applesauce. The frustrating part is that he isn't even interested in eating stuff he normally likes at home, like fresh fruit. No interest in plums, strawberries, bananas or other good stuff.
He's never going to get stronger if he doesn't start eating more regularly. He is now able to lift up his head a bit. But he is still unable to sit up unassisted or stand. Ken has propped him up to a standing position, but him legs can only handle a second or two. Plus, the longer he is immobile, the more muscle tone he will lose.
Friday, April 07, 2006
One-and-a-half steps forward, one step back
Posted by Mother in Chief at 4/07/2006 09:19:00 PM
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6 comments:
I hope his appetite comes back soon. I don't blame him for not liking the hospital food. :(
What a bummer. You are really on a rollercoaster. You must all be having such a hard time, we're continuing to hope hard for progress - hang in there. Do you think that stuff brought in might be more attractive to him? I can grab some fat-free recipes and rustle up some stuff to bring in next week if you think it might be attractive to him. Can you give him cheese-free pizza?
Let me know if I can do anything.
Thinking of you all
Jude et al
This is something I can kind of relate to. Michael (2 yrs old) has allergies to milk, eggs, soy, and peanuts, so his diet basically consists of chicken and broccoli (well, a few other foods, but not much!). We really have no other choice but to say "no" all the time, so he's pretty much used to it, and we are too. Once in a while he complains, but if we just say no calmly and firmly and without emotion he usually gets over it pretty quickly.
Some tips from our dairy-free experience: dessert is tricky for us since Michael can't have ice cream or chocolate, so we always have suckers and frozen fruit bars on hand for him. When we go out for ice cream, there's usually a dairy free (read: fat-free too!) fruit whip that he can eat. He really enjoys that. Maybe you can entice Riley to eat treats like this for now, just to get his caloric intake up.
6.6 grams is really low. That's a tough limit. But at least he can still have sugar... hopefully he'll regain his appetite for fruits soon.
Other things we do that might work with Riley: toast/bagels with jelly instead of butter; applesauce (we buy the prepackaged flavored ones so they're like a treat); canned fruits; cereal with mashed bananas and skim milk (Michael uses rice milk); pasta with red sauce (which is usually low fat or fat free); fat free cereal bars. I'll talk to Amy tomorrow... she may have some more ideas.
I'm sure this is frustrating..but the trend is in the right direction. See if someone from Nutrition (a nutritionist) can come up and consult with options for him with his dietary restrictions. He/she can let you know what special options Riley may prefere that they may have from the kitchen to get him the calories he needs and the protein as well. Or foods you can bring in. Also, I assume Physical therapy is continuing with Riley? If not ask for them to continue sessions to improve movement and physical activities. (Often they'll do the sessions in the play room so he gets motiviated). One other thing is ask about an Occupational therapist. Sounds odd, but manytimes they can work with PT to help Riley regain muscle strength and coordination.
You guys are doing such a great job with him, i can't even begin to tell you!!!
-Dave and Marisa
It is a bummer. Hopefully today will be better again. The OT and PT should really help also. Our OT at school uses a small excercise ball for one of our little guys to sit on during lunch etc. to build up his leg and back muscles and it is fun besides. I hope he eats better today. Tell him Grammy loves him.
Grammy and Wayne
The Dietician referral is an excellent suggestion. Also, I am glad to hear that he is getting therapy- OT and PT. The therapists at UCSF are wonderful. Amanda had extensive therapy after her Fontan because she suffered a brain injury. She could not hold up her head or sit up or even talk and by the time she was ready to go home ( 2 weeks of therapy) she was walking with help and talking. I know it is a long road, so hang in there. You continue to be in my prayers.
Linda
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