We're plugging along. We went to Cincy yesterday and finally got his drain out. It had been in for 6? (can't even remember) weeks! His skin seems to be closing up nicely. We went for bloodwork and a check up, basically.
Other than that, we enjoyed Mother's Day at my moms house with the family. We're also planning on going to the zoo this Saturday, yay! Someday I'll get pics up, they just can't seem to get off my camera!
Update on the update :)
So, we have almost all the bloodwork back (thank goodness for Cincinnati's new online feature!)
Overall, the verdict is mixed. His IGG (immune related) is back up where it should be after the IV he had two weeks ago. This is to be expected, as the IV is supposed to work for at least 3-4 weeks. BUT (and there's always a but, it seems) his cholesterol is just getting further and further out of the realm of normal. We didn't have a baseline before the meds unfortunately, but even after 1 week of meds it was high (203) and now, after a month it is 232. I just hope it stops rising because we've hit the right amount of the drug in his system. His LDL cholesterol and trigylcerides are increasing steadily as well. I hate this, because I've been told there's nothing on my end that I can do. Even so, I'm trying more of his blended diet, hoping his body can deal with that better than the pediasure.
Showing posts with label blended diet. Show all posts
Showing posts with label blended diet. Show all posts
Tuesday, May 17, 2011
Friday, November 12, 2010
Micah's happenings...
Micah has taken his first steps! :) Go Micah! He's taken a few more, but he's just not a fan of the ideeym (that's Micah saying hi). idea... that he isn't hanging on to anyone. I think he'll catch on eventually. He's always going, so I think when he realizes he can go faster this way, he'll do it.
We're also starting him on a new diet. A lot of kids who vomit a lot on canned formulas (like pediasure) do better on this, but it took a few weeks to get the okay from the powers that be. So, this is what we mix together. It's a basic recipe, since all the foods are baby foods. Eventually you can switch to regular food with a very expensive blender.
Micah's Blenderized Diet
2.5 oz orange veggie
2.5 oz fruit
2.5 oz baby food meat
1/4 cup baby rice cereal
4 oz whole milk
1 tsp (eventually 1 tbsp) olive oil.
Needless to say it doesn't smell the best (baby beef=major hurling potential). But as you can imagine, the body should be able to digest real food better than pediasure, which uses a LOT of sugar to get the calorie density needed. So, you blend this all together and push it through his feeding tube. We'll do this for his day time feeding (12 oz), but the pediasure at night (15 oz). Let's hope this works out. A LOT of people really believe in this, and find their kids can take more of this at a time than of a commercial formula. As you can tell, he doesn't get a lot during the day. He's up to getting 4 oz of formula every 4 hours. Ridiculous, I know. It's taken probably 2 months to go from 3 .5 oz to 4. I'd like to get my hopes up on this, but I know better. Wish us luck!
We're also starting him on a new diet. A lot of kids who vomit a lot on canned formulas (like pediasure) do better on this, but it took a few weeks to get the okay from the powers that be. So, this is what we mix together. It's a basic recipe, since all the foods are baby foods. Eventually you can switch to regular food with a very expensive blender.
Micah's Blenderized Diet
2.5 oz orange veggie
2.5 oz fruit
2.5 oz baby food meat
1/4 cup baby rice cereal
4 oz whole milk
1 tsp (eventually 1 tbsp) olive oil.
Needless to say it doesn't smell the best (baby beef=major hurling potential). But as you can imagine, the body should be able to digest real food better than pediasure, which uses a LOT of sugar to get the calorie density needed. So, you blend this all together and push it through his feeding tube. We'll do this for his day time feeding (12 oz), but the pediasure at night (15 oz). Let's hope this works out. A LOT of people really believe in this, and find their kids can take more of this at a time than of a commercial formula. As you can tell, he doesn't get a lot during the day. He's up to getting 4 oz of formula every 4 hours. Ridiculous, I know. It's taken probably 2 months to go from 3 .5 oz to 4. I'd like to get my hopes up on this, but I know better. Wish us luck!
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