Asparagus, asparagus, how I love thee
You are so delicious, oh me, oh my, wow-we
But why, oh why do you hate CutiePie?
Are you just trying to make me cry?
All that smelly vomit all over my chair
It didn't smell any better when it got in her hair.
Or how about that horrible red diaper rash?
Is it just that you and her do not mash?
So until a new day, my sweet veggie of green.
When the breastfeeding is done you know what that means -
We can be reunited again you sweet little tree
And rekindle our love, asparagus and me.
Okay, so maybe I don't have a future career as a poet. :)
All-in-all Thanksgiving was a super happy great holiday. Our travel plans ended up being cancelled because CutiePie's daddy had to work, but we had a wonderful weekend with my side of the family instead. CutiePie was the center of attention and I think she ended up eating her weight in cheese (cheese and crackers are the snacks of choice with my family!). However, on Friday we sat down to a absolutly delicious steak dinner cooked by my grandmother complete with my favorite veggie - asparagus. I don't eat it very often (mostly because I have no clue how to cook it!) and I kinda pigged out on it. I even gave CutiePie a spear to play with. She didn't eat it (no surprise) but she did lick it a couple times. Honestly, I didn't even really think much about it. She has done fine with every other green veggie we tried, and I didn't think she'd eat it anyway but Friday night she was up ALL night screaming. By Saturday morning she had the worst acid poo diaper rash I've ever seen and about 90 minutes after having a bottle of my milk Saturday afternoon the vomiting started. The only thing we could think it may have been was the asparagus. There hasn't been anything new in either of our diets. At first I thought it might be the return of the stomach bug, but she vomited for 15ish minutes, emptying her stomach and then she was fine. Nothing else. Have I mentioned how much I hate the smell of vomit? And let me clue you in on a little secret. They say asparagus makes your pee smell funny, but I would argue that it makes vomit smell worse too.
Monday, November 26, 2012
Monday, November 12, 2012
Feeding Therapy and the Smell of Failure...
One step forward, two steps back.
The last time I updated I mentioned that CutiePie was being refered to the Feeding Therapy team at our local Children's Hospital. The hope is that they can evaluate why she isn't eating enough and help us increase her daily calorie intake and help her have a balanced diet outside of my milk. Sounds like a perfect match, right? Well I got a call from the intake nurse to schedule our appointment and the next available evaluation appointment isn't until FEBRUARY. That is a solid three MONTHS from now. AND after talking to the nurse it is common for insurance companies to deny coverage, and even if they do we have to a pay a co-pay for EACH specialty she will see that day - up to five different departments. Our specialist co-pays are $40 a pop, so $40 x 5 specialties = $200 FOR ONE VISIT! ::sigh:: And what the heck are we supposed to do for the next three months? The nutritionist we saw at Children's last week suggested I download an app for my phone called My Fitness Pal and keep track of everything CutiePie eats to make sure she is at least getting close to the 950 calories/day she needs. The ap is actually really cool - you can just scan the barcode of anything you eat and it automatically puts it into the diary. MUCH easier than the notebook I used to keep for CutiePie and WAY easier to track the number of calories. Well, after a week of tracking and using all the tricks the nutritionist gave us, and feeding her bowls of strawberry ice cream every evening she has yet to even reach 700 calories/day. I'm beginning to wonder if this little girl is any way genetically related to me. The other night for dinner she had on her plate a spoonful of sunbutter, Cheecha puffs with cream cheese, shredded cheddar, watermelon, and a strawberry milkshake. I cringed giving it to her because it goes against everything I've ever learned about what to feed a toddler, but all the ate was the Cheecha puffs anyway. ::sigh:: At least we have three months to get her to eat before having to spend a small fortune for some professionals to watch her not eat.
And then we had yesterday. She was eating so well all morning. She drank all her milk, ate several snack throughout church service, came home and actually ate lunch. It looked like she might have her best calorie day yet. I gave her a bowl of strawberry ice cream in the afternoon, put her down for a nap, and left her with daddy while I went out for a very rare, much needed dinner out with some girlfriends. I was gone for about 3 hours, so I expected her to be excited when I got home. I came in the door and immediately knew something was wrong. Daddy said she had been crying since she woke up from her nap, and as I went over to pick her up she immediately opened her mouth and puked. And puked. And puked. Daddy had given her a bottle full of cow's milk with her dinner and it all came back up. Plus everything else she had eaten all day. It was curdled and smelly and EVERYWHERE. However, after her tummy was empty she was back to laughing and playing and she was happy as could be. Totally suspicious. She played with me for a couple hours, drank a bottle of my milk, and then we snuggled up in bed and went to sleep. Two hours later I woke up to her puking all over me again. And our bed. And our pillow. I used to be a teacher. I taught anywhere from infants up to 1st grade and I've dealt with my share of kids with a stomach bug. You would *think* the smell of vomit wouldn't bother me anymore, but I swear I have the weakest tolerance on the face of the planet. Poor daddy ends up having to be the one to clean it up. (I married an AMAZING man who doesn't mind either!) So after another shower and new sheets/blankets/pillows we finally got back to sleep. This morning she is acting fine, but refusing any type of solids. So far today she's had a bottle of my milk and about 5 Cheecha puffs and 2 small noodles. I am *hoping* it is just a virus and not some reaction to something she ate, but either way we can't at this point afford for any set backs with her eating. The last time she had a puking reaction it took her SIX WEEKS to eat anything other than Cheecha puffs. And back then I was making a heck of a lot more milk than I am now.
On a positive note though, after four loads of pukey laundry my house is finally starting to smell normal again. I think I may bake some chocolate chip cookies this afternoon though, just to push it over to a pleasant smelling place rather than just an okay smelling place. And I'm thinking maybe I deserve a cookie or two (or twelve!) right about now!
The last time I updated I mentioned that CutiePie was being refered to the Feeding Therapy team at our local Children's Hospital. The hope is that they can evaluate why she isn't eating enough and help us increase her daily calorie intake and help her have a balanced diet outside of my milk. Sounds like a perfect match, right? Well I got a call from the intake nurse to schedule our appointment and the next available evaluation appointment isn't until FEBRUARY. That is a solid three MONTHS from now. AND after talking to the nurse it is common for insurance companies to deny coverage, and even if they do we have to a pay a co-pay for EACH specialty she will see that day - up to five different departments. Our specialist co-pays are $40 a pop, so $40 x 5 specialties = $200 FOR ONE VISIT! ::sigh:: And what the heck are we supposed to do for the next three months? The nutritionist we saw at Children's last week suggested I download an app for my phone called My Fitness Pal and keep track of everything CutiePie eats to make sure she is at least getting close to the 950 calories/day she needs. The ap is actually really cool - you can just scan the barcode of anything you eat and it automatically puts it into the diary. MUCH easier than the notebook I used to keep for CutiePie and WAY easier to track the number of calories. Well, after a week of tracking and using all the tricks the nutritionist gave us, and feeding her bowls of strawberry ice cream every evening she has yet to even reach 700 calories/day. I'm beginning to wonder if this little girl is any way genetically related to me. The other night for dinner she had on her plate a spoonful of sunbutter, Cheecha puffs with cream cheese, shredded cheddar, watermelon, and a strawberry milkshake. I cringed giving it to her because it goes against everything I've ever learned about what to feed a toddler, but all the ate was the Cheecha puffs anyway. ::sigh:: At least we have three months to get her to eat before having to spend a small fortune for some professionals to watch her not eat.
And then we had yesterday. She was eating so well all morning. She drank all her milk, ate several snack throughout church service, came home and actually ate lunch. It looked like she might have her best calorie day yet. I gave her a bowl of strawberry ice cream in the afternoon, put her down for a nap, and left her with daddy while I went out for a very rare, much needed dinner out with some girlfriends. I was gone for about 3 hours, so I expected her to be excited when I got home. I came in the door and immediately knew something was wrong. Daddy said she had been crying since she woke up from her nap, and as I went over to pick her up she immediately opened her mouth and puked. And puked. And puked. Daddy had given her a bottle full of cow's milk with her dinner and it all came back up. Plus everything else she had eaten all day. It was curdled and smelly and EVERYWHERE. However, after her tummy was empty she was back to laughing and playing and she was happy as could be. Totally suspicious. She played with me for a couple hours, drank a bottle of my milk, and then we snuggled up in bed and went to sleep. Two hours later I woke up to her puking all over me again. And our bed. And our pillow. I used to be a teacher. I taught anywhere from infants up to 1st grade and I've dealt with my share of kids with a stomach bug. You would *think* the smell of vomit wouldn't bother me anymore, but I swear I have the weakest tolerance on the face of the planet. Poor daddy ends up having to be the one to clean it up. (I married an AMAZING man who doesn't mind either!) So after another shower and new sheets/blankets/pillows we finally got back to sleep. This morning she is acting fine, but refusing any type of solids. So far today she's had a bottle of my milk and about 5 Cheecha puffs and 2 small noodles. I am *hoping* it is just a virus and not some reaction to something she ate, but either way we can't at this point afford for any set backs with her eating. The last time she had a puking reaction it took her SIX WEEKS to eat anything other than Cheecha puffs. And back then I was making a heck of a lot more milk than I am now.
On a positive note though, after four loads of pukey laundry my house is finally starting to smell normal again. I think I may bake some chocolate chip cookies this afternoon though, just to push it over to a pleasant smelling place rather than just an okay smelling place. And I'm thinking maybe I deserve a cookie or two (or twelve!) right about now!
Wednesday, November 7, 2012
Another Day, Another Doctor...
Yesterday was an exciting day for CutiePie. We started off the day by casting our votes for the next President and then it was off to Cincinnati Children's Hospital for a consultation with a new allergist. The hospital itself is so intimidating to me. Just floors and floors and building after building of doctors and sick kids. Just walking in the doors made me want to cry. It was a whole host of mixed feelings for me being there- anxiety for CutiePie's appointment, hope for some real answers, guilt that I was there with a mostly healthy little girl, sadness for the very very sick kids that I was sharing that building with, and just an overall feeling of frustration that all those doctors within those walls can do NOTHING to make my baby better. ::sigh::
All that aside, the allergist appointment itself was fairly productive. We were there for three long hours, and most of that time was actually spent with the doctors/nurses. Our doctor wanted to talk about each of CutiePie's severe reactions in detail as he typed it into her chart right then and there. He asked a million questions and we talked about a million things related to CutiePie's issues. Some of the things we talked about gave me some hope that he knew what he was talking about, but honestly nothing he told me about FPIES or the treatment was new news. I do feel like he listened to me a lot better than our old allergist and I feel like he actually cared about CutiePie and her quality of life. But I think that's the frustrating thing about FPIES. There's not really anything anyone else can do for her. It's just a day by day get through it kind of disease. Try something and if it doesn't work try something else. At the end of the day it is up to us as parents to make the decisions for CutiePie. For example, he told us that because she didn't have the horrible scary awful vomiting with oats that she likely was okay with them. Considering it coincided with crazy bad eczema and mucusy lime-green poops which cleared up as soon as oats were out of her (and my) diet, I don't really care if he thought oats was a trigger for her or not. I'm not feeding them to her.
After we were done talking to the allergist, he suggested having the dietician come in there and talk to us and evaluate CutiePie's diet to see if she could suggest some foods/supplements/whatever that could help her have a more complete diet and increase her calories so she might actually gain some weight. I think talking to her was more helpful than seeing the allergist. She gave us some great tips on increasing her calorie intake and gave us a goal for CutiePie to get about 950 calories/day. Right now she is getting about 350 calories/day from my milk, so we have a lot of work to do. We also talked about weaning her off of my milk and onto regular whole milk, which I think we will start thinking about after the first of the year. She also suggested we get CutiePie on the waiting list for the feeding therapy team at Childrens. I am waiting on a call from them to make that happen. Hopefully that will help her get over some of her food aversions which will in return help her get more, get more calories, and gain some weight.
Our original reason for visiting was to talk about the possibility of CutiePie also having an Eosinophilic Gastrointestinal Disorder (EGID). The allergist said it was unlikely she has both FPIES and an EGID, but he did say he has seen kids with FPIES end up getting an EGID diagnosis later in life. He kinda came across as thinking a kid may outgrow FPIES and then develop an EGID. However, he did say with her poor growth it may be wise to have her scoped and evaluated. He wants our pediatrician to reevaluate her growth and then possibly refer us to a GI specialist. I think I want to hold off on that for a couple months though and give us the chance to work with the feeding therapy and the dietician to try and see if we can kinda get her to put on some weight and eat a little more before we take any steps in any other directions.
So tonight I am doing some high calorie FPIES friendly cooking. Up tonight - spinach dip to go with her CheeCha puffs. Because you know, adding spinach into some cream cheese and oil and mayo totally gives it a health-food feel! ;)
All that aside, the allergist appointment itself was fairly productive. We were there for three long hours, and most of that time was actually spent with the doctors/nurses. Our doctor wanted to talk about each of CutiePie's severe reactions in detail as he typed it into her chart right then and there. He asked a million questions and we talked about a million things related to CutiePie's issues. Some of the things we talked about gave me some hope that he knew what he was talking about, but honestly nothing he told me about FPIES or the treatment was new news. I do feel like he listened to me a lot better than our old allergist and I feel like he actually cared about CutiePie and her quality of life. But I think that's the frustrating thing about FPIES. There's not really anything anyone else can do for her. It's just a day by day get through it kind of disease. Try something and if it doesn't work try something else. At the end of the day it is up to us as parents to make the decisions for CutiePie. For example, he told us that because she didn't have the horrible scary awful vomiting with oats that she likely was okay with them. Considering it coincided with crazy bad eczema and mucusy lime-green poops which cleared up as soon as oats were out of her (and my) diet, I don't really care if he thought oats was a trigger for her or not. I'm not feeding them to her.
After we were done talking to the allergist, he suggested having the dietician come in there and talk to us and evaluate CutiePie's diet to see if she could suggest some foods/supplements/whatever that could help her have a more complete diet and increase her calories so she might actually gain some weight. I think talking to her was more helpful than seeing the allergist. She gave us some great tips on increasing her calorie intake and gave us a goal for CutiePie to get about 950 calories/day. Right now she is getting about 350 calories/day from my milk, so we have a lot of work to do. We also talked about weaning her off of my milk and onto regular whole milk, which I think we will start thinking about after the first of the year. She also suggested we get CutiePie on the waiting list for the feeding therapy team at Childrens. I am waiting on a call from them to make that happen. Hopefully that will help her get over some of her food aversions which will in return help her get more, get more calories, and gain some weight.
Our original reason for visiting was to talk about the possibility of CutiePie also having an Eosinophilic Gastrointestinal Disorder (EGID). The allergist said it was unlikely she has both FPIES and an EGID, but he did say he has seen kids with FPIES end up getting an EGID diagnosis later in life. He kinda came across as thinking a kid may outgrow FPIES and then develop an EGID. However, he did say with her poor growth it may be wise to have her scoped and evaluated. He wants our pediatrician to reevaluate her growth and then possibly refer us to a GI specialist. I think I want to hold off on that for a couple months though and give us the chance to work with the feeding therapy and the dietician to try and see if we can kinda get her to put on some weight and eat a little more before we take any steps in any other directions.
So tonight I am doing some high calorie FPIES friendly cooking. Up tonight - spinach dip to go with her CheeCha puffs. Because you know, adding spinach into some cream cheese and oil and mayo totally gives it a health-food feel! ;)
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