I figure that if I see it enough times in writing, I'll come to terms with it. What does it mean? In short there is almost nothing that I can feed my kid. I don't want Asher to grow up being the kid in the bubble, but how will I be able to experiment with foods as he grows up if I'm risking another severe allergic episode.
Chelle and I have talked a lot about learning how to make our own baby food....I'm thinking this is really the only way to go with Asher. If you look at nutrition labels, almost everything is fortified with protein, even vegetables. The only way I can really bypass this is to buy fresh fruits and veggies and make my own foods for him. Neocate (The formula that hes on) is a straight Amino Acids formula, so even fresh fruits and veggies could be hard for him to digest. There is an amino acid food base paste that I can add veggie to, but I really hate to think of him eating like that until hes 5 or 6 which is when most children start to outgrow this type of allergy.
I've been reassured that most children do eventually outgrow it, but there is a small population that has to eat this medical food crap for the rest of their lives. I don't know, I like to eat more than most I guess. I like the way food tastes and I like to try different things. Its one of the awesome parts of life. Its sad to think that there are people that don't get those experiences and even sadder to me that my child may be one of them.
To make up for the inequity, they make flavor packets for the formula and food paste....but in my view its still a raw deal. Case in point, Asher's first birthday. Almost all parents stand poised with a camera over that first taste of cake, which inevitably ends up all over the baby's face, in the hair....everywhere. I'd like one of those pictures....I'd like one very much. But how will I make a cake for him. Weight Watchers has a nice cake recipe, but it requires the use of boxed cake mix....which has been fortified with protein. Even gluten free cakes have protein in them. If I try to make my own cake and exchange milk and eggs with Neocate...there is a huge possibility that the cake won't rise. And then what the hell would I do for frosting?
You see the problem? Its very frustrating. I'm taking him to see his GI specialist at the end of the month and I imagine this will be a top contender on the list of things to talk about. After all, Asher will be three months old in a few days. I only have a couple months before food would be introduced, I really need to learn how to make it now.
I tried joining a couple web based support sites for other mom's in this situation, but almost all of them have children with Nut, Soy, or Milk Protein Allergies. I haven't yet met another mom with a baby who has been diagnosed Acute Multiple Protein Allergy. So I haven't even been able to web surf for answers. I guess I would feel slightly better if his condition wasn't so rare. I mean the pharmacy doesn't even stock his formula. When I called they told me there isn't anyone else who has a prescription for it in town, so it would take them several days to a week to get their hands on it for us. Awesome. So in the meantime if you run out of food what do you do? The answer? Pedialyte. As much as Asher loves the taste....its just not a replacement for food. He needs something like three times as much Pedilyte as formula anyway, so feeding him is exhausting, which is why you see the pictures of him feeding himself. Those are Pedialyte bottles.
There is the hope that lingers though. Some kids do outgrow this by 1 or 2 years of age. I think about that when we're having a rough feeding day.
Chelle and I have talked a lot about learning how to make our own baby food....I'm thinking this is really the only way to go with Asher. If you look at nutrition labels, almost everything is fortified with protein, even vegetables. The only way I can really bypass this is to buy fresh fruits and veggies and make my own foods for him. Neocate (The formula that hes on) is a straight Amino Acids formula, so even fresh fruits and veggies could be hard for him to digest. There is an amino acid food base paste that I can add veggie to, but I really hate to think of him eating like that until hes 5 or 6 which is when most children start to outgrow this type of allergy.
I've been reassured that most children do eventually outgrow it, but there is a small population that has to eat this medical food crap for the rest of their lives. I don't know, I like to eat more than most I guess. I like the way food tastes and I like to try different things. Its one of the awesome parts of life. Its sad to think that there are people that don't get those experiences and even sadder to me that my child may be one of them.
To make up for the inequity, they make flavor packets for the formula and food paste....but in my view its still a raw deal. Case in point, Asher's first birthday. Almost all parents stand poised with a camera over that first taste of cake, which inevitably ends up all over the baby's face, in the hair....everywhere. I'd like one of those pictures....I'd like one very much. But how will I make a cake for him. Weight Watchers has a nice cake recipe, but it requires the use of boxed cake mix....which has been fortified with protein. Even gluten free cakes have protein in them. If I try to make my own cake and exchange milk and eggs with Neocate...there is a huge possibility that the cake won't rise. And then what the hell would I do for frosting?
You see the problem? Its very frustrating. I'm taking him to see his GI specialist at the end of the month and I imagine this will be a top contender on the list of things to talk about. After all, Asher will be three months old in a few days. I only have a couple months before food would be introduced, I really need to learn how to make it now.
I tried joining a couple web based support sites for other mom's in this situation, but almost all of them have children with Nut, Soy, or Milk Protein Allergies. I haven't yet met another mom with a baby who has been diagnosed Acute Multiple Protein Allergy. So I haven't even been able to web surf for answers. I guess I would feel slightly better if his condition wasn't so rare. I mean the pharmacy doesn't even stock his formula. When I called they told me there isn't anyone else who has a prescription for it in town, so it would take them several days to a week to get their hands on it for us. Awesome. So in the meantime if you run out of food what do you do? The answer? Pedialyte. As much as Asher loves the taste....its just not a replacement for food. He needs something like three times as much Pedilyte as formula anyway, so feeding him is exhausting, which is why you see the pictures of him feeding himself. Those are Pedialyte bottles.
There is the hope that lingers though. Some kids do outgrow this by 1 or 2 years of age. I think about that when we're having a rough feeding day.
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