So Connie asked me when I went back to using a blenderized diet for Peanut, and I realized that I never posted about it. :) When she had a bad virus this summer and ended up in the hospital, we switched her back to full Neocate Infant with Polycose. Unfortunately, with that diet came intractable diarrea! It was a mess. So even though the nutrionalist wanted her on the formula only diet for a while, the GI over-rode that decision and said to start back her blenderized diet. Quite a convert - he was completely opposed to it in the beginning. :)
So she is back on blenderized food. She does still get some Neocate with Polycose overnight for 12 hours, but during the day she gets three boluses of food. Her diet has to be strictly measured and weighed though. She has hypoglycemia issues and a metabolic disorder, so we have to be serious about it. She gets 5 ounces of fruit, 2.5 ounces of veggie, 1.5 ounces of meat, 100 cc's of Pedialyte, 1/8 tsp of salt, 1 tsp polycose, and 3 tbsp of rice cereal. It can only be Beechnut rice cereal, because she is soy and dairy intolerant and that is the only brand that is soy/dairy free. Some days this mixture is made from jarred baby food, some days it is made from fresh food. It depends on my busyness. :)
So there you have it! I switch up her veggies and fruit every day. Normally we use green beans, peas, carrots, squash, bananas, apples, pears, and peaches. I use jarred baby meat most of the time, because it's easiest. She does GREAT on a blenderized diet. Her nails and hair have never grown so fast, and so healthy. She is much happier, her BM's are more controllable, and life is good. YAY!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
7 comments:
Hooray! Wow, sounds like a lot of work. Good for you. :)
That does sound like a lot of work, but it seems that you control it very well :)
Wow her diet is as crazy as Jax! The girls are 5 months, but because they were so premature, their adjusted age is 5 weeks. The one we are adopting weighs under 8 lbs still.
Sounds like Peanut is eating very well! How does all that go through her G-tube? Does it get clogged or does the Pedialite help to make it mostly liquid? Sounds like a lot of work, but Peanut is definitely worth it!
I just got this info from my epilepsy support group: there is a new product out there for kids with seizures. It's a "placemat" that protects the edge of a table/desk in front of the child so if he/she has a seizure, the face/forehead/chin will be less likely to be injured. Apparently, the head guards that are prescribed by doctors don't protect the face. I thought I'd pass the info on to you. I know I've injured my own face when I've fallen during a seizure, so this may be practical, depending on your situation. Link is here: http://www.seizuresupport.com/
Just wondering if she's ever been tested for mitochondrial disorder? (forgive me if that's a stupid question) It's just that our doctor was VERY hesitant to do a muscle biopsy on our daughter because she didn't quite fit the typical profile...I fought him on it and it came back positive. Who knows how many kiddos out there have this disorder but their doctors don't test them because it's "unlikely". When you get to this point you know that whatever it is, it's unlikely! You know?
Thanks for the detailed answer! So did the dietician create the diet plan for you? I always wonder now what I should be giving for balance, but am afraid to ask the dieticians from the "big" hospital, because I know that no WAY can she take in the volumes I expect them to suggest. But I don't have the time or energy to research it obsessively, either, so we are right now feeding the way you feed babies who just start out with solids - nonobsessively. :)
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