When we meet with the ENT Specialist the end of January, I'm going to ask if they can retest her for the corn allergy. I just want to make sure we didn't get a false positive reading. Removing corn and all products of corn from her diet is challenging so we would hate to make her go corn free if she really doesn't have to be. I'm not sure if Dr. Edmonson will retest her for us or not but I figure it's working asking.
Our Dietician was back in the office today so I was able to chat with her for a bit about Allie's new formula. As some of you might remember, the first ingredient in her Neocate Junior formula is "corn syrup solids". Our Dietician told me again today that since the ingredients are so refined, there should be no corn protein left, just corn carbohydrates. However, she cannot guarantee that. Tammi our Dietician contacted Dr. Edmonson herself this afternoon since Dr. Edmonson is the one who requested Allie not be on the formula. I guess after they chatted, Dr. Edmonson agreed the formula is okay for now but they may have to change the formula in the near future - it will depend on how Allie does on it. In my opinion, she is doing good on the new formula. She is handing all of her feeds much better than before, however she is now back on the night time pump so that is a huge difference also. We are no longer trying to get 1000 calories into her in 12 hours - it's now happening over 24 hours, so her volume at each feeding is much lower. Overall the feedings are going well, however we are not moving in the right direction to possibility wean her off the tube one day. Our first goal in the wean process is getting her off the night time pump and now our Dietician wants to increase the night time rate so she gets fed more volume during the night. At this point, I need to just focus on Allie being able to tolerate her feedings and not think about how far away we are from weaning her.
I was driving in my van the other day and all of sudden I felt this huge cloud over me. I realized Allie has been tube fed for a full year now. I'm thankful for her feeding tube because it's saving her life daily, however it's a heavy feeling realizing it's been a whole year. This past year has been very challenging, especially for poor little Allie but overall, she is advancing well and meeting all of her milestones except for her speech and of course weight and height! (I'm still concerned that she is so short). Hopefully one of these doctors will listen to me and address my concern!
We went out to eat tonight at a restaurant called "Grazies". It's in Stevens Point and they make all of their own food. We called them ahead of time and they confirmed they have stuff we could order that was gluten and corn free. We ordered Allie rice pasta with marinara sauce. We figured this would work great but it turned into another huge failure when going out to eat. Chloe ordered mac & cheese and of course Allie wanted some of it. Allie didn't even touch her rice pasta. The minute she saw it, she started to cry and kept pointing to the mac & cheese. The whole eating out thing is proving to be nothing more than a disaster. Looks like we will be eating in for a while. We are pretty bummed about this because we enjoy eating out and this mom doesn't like to cook a lot. I don't mind making meals every couple nights but every night???? Hmmmm....looks like I am going to have to take up a new hobby called "cooking"!
My friends little boy named Eli is currently in the hospital for and infection, dehydration and now his motility is extremely slow. He needs prayers as the doctors are trying to figure out how to treat him. He is in a lot of pain and they are trying to stabilize him enough for possible surgery. Please say an extra prayer for Eli and his parents tonight. You can check out his blog at: http://ejbamommy.blogspot.com/
Here are a couple pictures from tonight....
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| Allie back after removing the cream corn band-aid tonight. You really cannot see anything in this picture. |
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| Close up of her back. You can see the redness starting where the bandage adhesive was, however no reaction from the cream corn :( |
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| Pink hand from coloring in the bathtub. |
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| Look mom, I have blue hands |
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| Just chillaxin |
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| Allie eating her 2nd bowl of pudding tonight after her bath. Granted there wasn't much in either bowl but at least she's eating!!! She likes pudding and I finally found one that is gluten and corn free. Good night! |
I am glad that you have some piece of mind about the home test ;o) Hopefully the ENT will confirm the retest and you guys can know for sure if you are finally on the right track! My heart breaks for your one year anniversary, I know dates are stuck in my mind and it is almost a challenge to defy the odds. Praying for you guys!
ReplyDelete"the ingredients are so refined, there should be no corn protein left, just corn carbohydrates"
ReplyDeleteWe have 2 foods for animal allergies where the proteins are broken down to the point of being non-allergenic. There are a small number (I am thinking ~1%???) who still react to it even though they shouldn't. It also apparently doesn't taste very good cause even though the 2 are made by different companies, it is very difficult to get cats (and picky dogs)to eat them. (Once again, I am in no way comparing your kids to pets, just letting you know what we have found about hydrolyzed diets.)
Niki - I know you are not compairing my kids to pets - don't worry about that. I appreciate your knowledge and input - I know you know your stuff so your feedback is greatly appreciated. Like the pet hydrolyzed diets, Allie's Neocate formula is awful and she will not drink it. We even tried the flavored kind, plus the flavored straws and she still won't drink it. Right now she is drinking whole milk orally and she is slowly adjusting to that. Overall she's doing pretty good - still sassy so that's a good sign!
ReplyDeleteHi Jodi,
ReplyDeleteThanks for your post - Neocate is just nasty, isn't it? I gag when I'm mixing it....blah!
A year is a long time...we are the same time line as you and honestly I almost cry everyday. Not because I don't love Noah, not because it is the worst lifestyle but it is without a timeline, without a sense of why our little people won't eat or maybe can't eat. It is okay that it is hard.
I feel the same way about tube feeding: grateful to keep my son growing and alive and in other ways, just so hard.
Praying for you....
Darlene
Great reeading
ReplyDeleteNice post thanks foor sharing
ReplyDelete