I finished the dishes, started the dishwasher, and loaded the washing machine and set it for a 10 hour delay so I could put a load in the dryer first thing in the morning. Then I took Tomas to the bedroom, changed his diaper and his clothes, put his oxygen cannula on. his pulse ox probe on, checked his blood sugars and vented the air out of his belly (ok - I'm pretty sure Erma didn't do that stuff but you get the idea). After I put him in the crib I went back out to the kitchen and started to make his formula for the next day.
His formula is something else. Long ago I decided I wanted him off the canned stuff. I breastfed my girls and pretty much went straight to mashed table food. Very little jarred food was ever used. With Tomas, I pumped for 9 months and then stopped because I just couldn't find the time anymore. So we switched to over the counter formula. I have always hated it. It smells and tastes horrible. But it also kept my son alive so it most definitely has it's place. Anyway, when he turned one and it was time to move to a toddler formula I decided to give a blenderized diet a try. After tweaking and tuning and adding (all under the guidance of a nutritionist) we had a "recipe" that made me happy and was "real" food. Enter hypoglycemia. In order to try to stabilize his sugars we added fiber and more protein. That didn't seem to help, but the doctors at the hospital were quite glad he was on a blended diet instead of a canned formula as it allowed for the most modification. One doctor's instructions were to substitute all the short chain sugars for long chain sugars.
So there I was in the kitchen with all the ingredients out on the counter: organic 1% milk, organic low fat yogurt (he has to have the low fat milk products because of the missing gall bladder), vegetable puree I made, fruit puree I made, black bean puree I made (for fiber), baby food meat (the one thing I haven't figured out how to duplicate at home and get it smooth enough to fit through the pump), organic multigrain baby cereal, MCT oil, flax oil, and fish oil (added to replace the milk fats - these are easier to digest).
All of these sat out on my counter. Every night I mix up his batch for the next day, but that night I needed to study the sugars on a molecular level. Has the world gone completely mad???? In the end I decided to throw it at the feet of his nutritional team and run with the regular recipe through the weekend.
So back to me getting to bed early, I made the formula, started some rice for my husband to have with some leftover etoufee for when he got home, and re-cleaned the kitchen. By then the girls were done bathing so I tucked them into the guest bed (where the tv is) and blessed them good night. I then staggered my way into my bed. 9:20, 2 hours and 20 minutes after I started!
He is as handsome as ever!
ReplyDeleteNot sure how you're doing it all. Praying for your strength
ReplyDeleteHow blessed your kids are to have you as a mommy! Tomas is a baby no more. He looks like a little man :-)
ReplyDeleteThanks for saying hi on Bella's blog. Your sweet little guy is so handsome. I read back a few posts, and my goodness. It's so frustrating when they can't figure out what's wrong. Wishing you some rest and some answers.
ReplyDeleteYou always end with that face and that face brings me such joy.That smile endures,even while the child is feeling like garbage.Amazing he is.
ReplyDeleteAnd as to that wall,surprised you haven't hit it sooner my friend.But much like your son,you push through it and find your way ... even if it is 2 hours later!
I had no idea Tomas was on a blenderized diet.I have just started dabbling with that myself for Zoey.So hoping we find an answer for those slow moving intestines of hers.Mirilax,colace,probiotics ... not working.something has got to give,Hope this is the ticket.
Hope your weekend is .. uneventful.
Oh,and remember that quote you found that reminded you of me... I can't find what post you put it on.Will you send it to me again please?
Oh...will you ever forgive me for being such a bad commenter. Through all of your trial with Tomas and being in the hospital, I have been reading every post but not commenting. Seems I was always rushing through my blog reading. But yours is always one I make sure I check in on. Please just know that you are in my thoughts even though I don't always let you know it. I am just really hoping that everything is getting figured out. And by the way, I am AMAZED at what you do to feed Tomas everyday. I don't know that I would ever get that figured out!! You inspire me daily with how well you handle all that is put on your plate. And then you choose to homeschool on top of it all....wow!!!
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