I started the quinoa trial last Tuesday and now, nearly a week later, I don't have an answer about this food. It's frustrating. I'm frustrated. I just want G to have more healthy food to eat. I want her to eat more so she can sleep more and I can sleep more. I want her to eat so I can stop worrying that I'll be nursing her until I'm 65. I want her to eat more so that she won't end up getting her nutrition via a feeding tube or a canned nutritional drink. We watched Wall-E with Ellie this weekend and I told John I wish we could all have all of our food 'in a cup' like they do in Wall-E. There wouldn't be crumbs. It would be quick to eat - and I just don't enjoy eating like I used to. I certainly don't enjoy eating in front of Ginny. Food seems to be a very combative enemy and we're at war daily.
We named her Genevieve. We call her Ginny, G, Little G... and sometimes even Goob. She has FPIES - Food Protein Induced Entercolitis Syndrome. The road to a diagnosis was tough, and we have an even longer road ahead of us as we figure out just what we can safely feed her, and work to keep her growing healthy and strong. I'm blogging to keep family and friends up to date as we learn more everyday - and just maybe our story will help other parents as they journey and struggle with FPIES too.
Monday, September 27, 2010
Tuesday, September 21, 2010
The Good, The Bad and the Ugly Truth
The good?
Today we went to our weekly playgroup and the hostess did something incredible for us. She made her home a food free zone, excepting a small amount of time during which she set out snacks. Snacks were limited to the kitchen and the menu included apples and pears (among other things), both safe foods for G. After snack time, she vacuumed and had the kids wash hands and faces, making the whole house once again food safe for G. Really? R-E-E-E-A-L-L-Y? Really. Imagine a house full to the brim of raucous three year olds and a smattering of younger kids from 14 months old on down to just a few weeks old - that's enough work as it is... So this was.... amazing. This was certainly a change for all the little ones(they usually snack non-stop on Tuesday mornings) and not easy for the moms either, but they all did it without a gripe. They did it for Ginny so she could crawl around just like everyone else. She got to snack like everyone else (and LOVED gnawing on an apple slice). When the hostess let me know that she intended to do this, I cried. I'm crying again as I type. We have gotten together with this group of moms and kiddos since Ellie was 8 months old (about 2.5 years ago) and I cannot begin to express what an incredible blessing they've been in our lives or how much this effort meant to me. Hooray Momfia! Long live the Momfia!
More good? Ginny got quinoa this morning, and so did Ellie. They both loved it. Ginny wasn't so interested in quinoa on a spoon, but quinoa on her tray (and on her hands and face and in her hair) as a 'finger food' was a big hit.
The bad?
About an hour after eating (and covering herself and her seat and the floor in) quinoa, Ginny got the 'urp-y' hiccups. They were... liquid-y(?) and they made me very nervous. Although G was in great spirits for most of the morning, the afternoon brought more gas than I realized was possible for such a little child to pass and this evening brought an explosive, mucous-filled diaper. Wow, it's been WAY too long since I talked about poop. I think you've all let your guard down and wham! Here it is again.
The Ugly Truth?
I'm a nervous wreck. We may not end up in the ER tonight, but I doubt I'll sleep much and my hand will shake as I feed G quinoa again in the morning. The hiccups, the gas and the icky diaper are all bad signs. I am afraid. I'm not hopeful that this is going to end well. John said he's hopeful. I'll let him change the next diaper and see if it changes his mind.
Today we went to our weekly playgroup and the hostess did something incredible for us. She made her home a food free zone, excepting a small amount of time during which she set out snacks. Snacks were limited to the kitchen and the menu included apples and pears (among other things), both safe foods for G. After snack time, she vacuumed and had the kids wash hands and faces, making the whole house once again food safe for G. Really? R-E-E-E-A-L-L-Y? Really. Imagine a house full to the brim of raucous three year olds and a smattering of younger kids from 14 months old on down to just a few weeks old - that's enough work as it is... So this was.... amazing. This was certainly a change for all the little ones(they usually snack non-stop on Tuesday mornings) and not easy for the moms either, but they all did it without a gripe. They did it for Ginny so she could crawl around just like everyone else. She got to snack like everyone else (and LOVED gnawing on an apple slice). When the hostess let me know that she intended to do this, I cried. I'm crying again as I type. We have gotten together with this group of moms and kiddos since Ellie was 8 months old (about 2.5 years ago) and I cannot begin to express what an incredible blessing they've been in our lives or how much this effort meant to me. Hooray Momfia! Long live the Momfia!
More good? Ginny got quinoa this morning, and so did Ellie. They both loved it. Ginny wasn't so interested in quinoa on a spoon, but quinoa on her tray (and on her hands and face and in her hair) as a 'finger food' was a big hit.
The bad?
About an hour after eating (and covering herself and her seat and the floor in) quinoa, Ginny got the 'urp-y' hiccups. They were... liquid-y(?) and they made me very nervous. Although G was in great spirits for most of the morning, the afternoon brought more gas than I realized was possible for such a little child to pass and this evening brought an explosive, mucous-filled diaper. Wow, it's been WAY too long since I talked about poop. I think you've all let your guard down and wham! Here it is again.
The Ugly Truth?
I'm a nervous wreck. We may not end up in the ER tonight, but I doubt I'll sleep much and my hand will shake as I feed G quinoa again in the morning. The hiccups, the gas and the icky diaper are all bad signs. I am afraid. I'm not hopeful that this is going to end well. John said he's hopeful. I'll let him change the next diaper and see if it changes his mind.
Monday, September 20, 2010
It's pronounced KEEN-wah
This might be a long post. Sorry in advance. When I sit down to type I always think I'll be done quickly and have nothing to say but, somehow, once I get to typing and rambling, well.... if you're a blog follower, you know how it goes. I'm a fast talker and a fast typist and I just can't stop myself and hey, why not? Blogging is free! Your time, of course, is very valuable, so I give you full permission to skim through every post. I can't really afford to pay you for your time after all. If you have nothing better to do though.... well... grab a cup of coffee and enjoy.
Fun things first...
Apples are now on G's safe food list. She has had them fresh in a mesh feeder. She has had them frozen in a mesh feeder. She has had them as a cooked puree. She has had apples every day for a week. She has not had them in a box nor with a fox. She has had them here and there, but she seems none the worse for the wear. We now how three safe foods. Hooray!
Teeth! Last Friday (9/17) two more teeth made their appearance above G's gumline. I seem to remember reading somewhere that most kids get teeth in the same order starting with the bottom center two, followed by the top center two. Of course, Ginny doesn't like to be like other kids so her 2nd two teeth were two additional bottom teeth. I've got to admit that it's kind of funny to see a kid with only four bottom teeth grinning at you! But that funny grin won't last for long because the top center two teeth broke through today (They're HUGE!). Ellie was never bothered by teething but Ginny seems to have a tougher time (Maybe because those top two teeth are SO FREAKING HUGE). Poor kiddo. Perhaps 6 teeth is enough for now and she'll get a break. All these milestones are fun, aren't they?
Fun things first...
Apples are now on G's safe food list. She has had them fresh in a mesh feeder. She has had them frozen in a mesh feeder. She has had them as a cooked puree. She has had apples every day for a week. She has not had them in a box nor with a fox. She has had them here and there, but she seems none the worse for the wear. We now how three safe foods. Hooray!
Teeth! Last Friday (9/17) two more teeth made their appearance above G's gumline. I seem to remember reading somewhere that most kids get teeth in the same order starting with the bottom center two, followed by the top center two. Of course, Ginny doesn't like to be like other kids so her 2nd two teeth were two additional bottom teeth. I've got to admit that it's kind of funny to see a kid with only four bottom teeth grinning at you! But that funny grin won't last for long because the top center two teeth broke through today (They're HUGE!). Ellie was never bothered by teething but Ginny seems to have a tougher time (Maybe because those top two teeth are SO FREAKING HUGE). Poor kiddo. Perhaps 6 teeth is enough for now and she'll get a break. All these milestones are fun, aren't they?
Thursday, September 16, 2010
An Apple a Day Doesn't Land us in the ER
We started the apple trial on Monday, (pathetic start though it was) which means that we're now on day four and I have nothing to tell you - or at least nothing all that exciting.
G got the raw apple bits in the mesh feeder on Monday, about two teaspoons on Tuesday, about an ounce on Wednesday and another ounce this morning. I guess I've gotten pretty aggressive with the food trials. I'm not a patient person, am I? But nothing, absolutely nothing has changed. Well... you can see the difference in her diapers, but not a bad difference. No blood. No mucous. So I'm hoping. I'm crossing my fingers and arms and toes and wishing on stars and avoiding walking under ladders and PRAYING that apples will be safe too. I still feel very lucky. I still fear that our luck will run out soon.
G got the raw apple bits in the mesh feeder on Monday, about two teaspoons on Tuesday, about an ounce on Wednesday and another ounce this morning. I guess I've gotten pretty aggressive with the food trials. I'm not a patient person, am I? But nothing, absolutely nothing has changed. Well... you can see the difference in her diapers, but not a bad difference. No blood. No mucous. So I'm hoping. I'm crossing my fingers and arms and toes and wishing on stars and avoiding walking under ladders and PRAYING that apples will be safe too. I still feel very lucky. I still fear that our luck will run out soon.
Monday, September 13, 2010
A Day of Firsts
Time is marching on - and we're finally marching again too. Today was day one of Ginny's apple trial. No more delays. We will not be dissuaded from moving forward by fear of food any longer. (But to clarify, Ginny near most food still terrifies me.) So, day one of the apple trial. To be honest, we kinda half-assed it. Yes, I just swore in my blog. Is anyone reading for whom this is problematic? (Is anyone reading this at all?) Didn't think so. The thing is, we really meant to officially start the trial for apples just like we had done for the pears and spinach. John bought three bags of apples (Yes, John went to the grocery store. No, it doesn't often happen. Yes, it rocked! No, I have no idea why he bought three bags of apples. Yes, if she fails apples you're all invited over for home made apple sauce so we can get rid of it all!) and they were just waiting for us to make them into a sweet, saucy puree. But... it was a busy weekend. The kids were wiped. We were wiped. Every moment had been packed and it got late before we knew it. John decided he would try to make a puree from uncooked apples with the skin on. Yes, I told him it wouldn't work. No, it didn't work. Yes, we tasted it and it was pretty foul. To peel and cut and cook and portion... we didn't have it in us.
So, how did we half-ass it? I just gave Ginny two little chunks in her mesh feeder this morning (at about 9:30 a.m.)and let her have at it. No measuring. She was a little irritated to be honest. When she gets pears this way they're ripe and soft and easy to mush. The apples were a little more challenging. She worked and worked and had some success and... so far, so good. Tonight though, we're on the ball. As of 9:58 p.m. we have one tray of apples nearly ready to come out of the oven and another waiting to go in. We'll have more applesauce than we know what to do with in no time.
Ginny wasn't the only one moving forward today though. Ellie had her first day of preschool. Hooray! I am both shocked and proud that I did not cry. Ellie didn't cry either. My little social butterfly was more than up for the task! She had a minor meltdown before leaving home when she started to desperately repeat, "But I don't know how to do preschool." None the less, she did preschool just fine. As far as we can tell, a game of duck duck goose and the snack were her favorite parts.
And just because they're so cute... here are some pictures of the girls....
So, how did we half-ass it? I just gave Ginny two little chunks in her mesh feeder this morning (at about 9:30 a.m.)and let her have at it. No measuring. She was a little irritated to be honest. When she gets pears this way they're ripe and soft and easy to mush. The apples were a little more challenging. She worked and worked and had some success and... so far, so good. Tonight though, we're on the ball. As of 9:58 p.m. we have one tray of apples nearly ready to come out of the oven and another waiting to go in. We'll have more applesauce than we know what to do with in no time.
Ginny wasn't the only one moving forward today though. Ellie had her first day of preschool. Hooray! I am both shocked and proud that I did not cry. Ellie didn't cry either. My little social butterfly was more than up for the task! She had a minor meltdown before leaving home when she started to desperately repeat, "But I don't know how to do preschool." None the less, she did preschool just fine. As far as we can tell, a game of duck duck goose and the snack were her favorite parts.
And just because they're so cute... here are some pictures of the girls....
Ellie on her first day of preschool. I picked out the outfit and she, of course, picked out the shoes.
Saturday, September 11, 2010
Waiting....
This post is all about waiting....
I've been waiting to start a new food trial. Why? Because I'm scared. Our first two foods were both safe foods. I feel like that was pretty lucky. I'm feeling like I shouldn't press my luck. I'm waiting because I'm too scared to move forward.
Have you been waiting for more news? Waiting for an update? I'm sorry if I've disappointed.
We were waiting last night... after G had her first accidental ingestion. Ellie was enjoying an apple. She KNOWS she can only eat at the kitchen counter or table. She knows it, but she's three. She went to her room to play and I thought she left the apple behind. I put G down to play with Ellie in her room, left momentarily and returned to find G licking/gnawing the apple as best she could. Truth be told, she looked so damn happy with that apple in her mouth/hand that it was almost heartbreaking to take it away. It was almost heartbreaking - and I snatched it away quick as lightening and felt the breath whoosh out of my chest just as fast. I called John as he was on his way home from work to tell him the news. We put the girls to bed and waited. And waited. We have no idea of knowing how much/how little apple (if anything) that G got, but the worry was huge. I accepted long ago that accidental ingestion at some point was inevitable - but I didn't think it would happen quite so soon. It's hard not to beat yourself up. I should have watched Ellie closer. I should have could have would have should have..... We waited. And nothing happened.
So, it's our hope that all the waiting will end on Monday. I intend to buy and prepare apples for our next food trial and start on Monday morning. Perhaps the lack of reaction to the apple gave me courage? Perhaps the other moms who share their stories online are inspiring me? Perhaps my own exhaustion is pushing me forward because WOW does a 10.5 month old who all but exclusively nurses eat a lot and eat often. Somehow, the joy of days without a food trials soured into days of agitated avoidance. It's time to stop waiting. Apples are in season.
I've been waiting to start a new food trial. Why? Because I'm scared. Our first two foods were both safe foods. I feel like that was pretty lucky. I'm feeling like I shouldn't press my luck. I'm waiting because I'm too scared to move forward.
Have you been waiting for more news? Waiting for an update? I'm sorry if I've disappointed.
We were waiting last night... after G had her first accidental ingestion. Ellie was enjoying an apple. She KNOWS she can only eat at the kitchen counter or table. She knows it, but she's three. She went to her room to play and I thought she left the apple behind. I put G down to play with Ellie in her room, left momentarily and returned to find G licking/gnawing the apple as best she could. Truth be told, she looked so damn happy with that apple in her mouth/hand that it was almost heartbreaking to take it away. It was almost heartbreaking - and I snatched it away quick as lightening and felt the breath whoosh out of my chest just as fast. I called John as he was on his way home from work to tell him the news. We put the girls to bed and waited. And waited. We have no idea of knowing how much/how little apple (if anything) that G got, but the worry was huge. I accepted long ago that accidental ingestion at some point was inevitable - but I didn't think it would happen quite so soon. It's hard not to beat yourself up. I should have watched Ellie closer. I should have could have would have should have..... We waited. And nothing happened.
So, it's our hope that all the waiting will end on Monday. I intend to buy and prepare apples for our next food trial and start on Monday morning. Perhaps the lack of reaction to the apple gave me courage? Perhaps the other moms who share their stories online are inspiring me? Perhaps my own exhaustion is pushing me forward because WOW does a 10.5 month old who all but exclusively nurses eat a lot and eat often. Somehow, the joy of days without a food trials soured into days of agitated avoidance. It's time to stop waiting. Apples are in season.
Thursday, September 2, 2010
Just in case you wanted to know...
We saw Wonder Woman today for Ellie's required pre-school exam and Ginny's very belated 9 month (she's 10 months old) appointment.
Ellie is holding strong in the 50th percentile for weight at 30.4 pounds and continuing on in the tradition of both the Baloun and Toussaint families in the 80th percentile for height at 3' 2 & 7/8". As she did when Ellie was an infant, Wonder Woman declared her to be 'perfect.'
Ginny... we think she's perfect too, just as she is :) She is in the 40th percentile for weight at 18 pounds, 7 ounces. She has dropped off her previous growth curve, but only slightly and actually, Ellie did when she was G's age too. Besides, G still has rolls of chub on her wrists and ankles and what I call 'fat tan' around these rolls. LOVE IT! At 2' 4.25" tall, she's in the 60th percentile for height.
One one hand, this appointment reassured me that Ginny is still growing strong. On the other hand, it shattered the calm I had yesterday and now I'm feeling like I really need to get back to food trials. Poor John, I'm probably going to talk his ear off about it tonight, trying to figure out what to feed G next. Hope you all have more fun in store for you tonight than John does!
Ellie is holding strong in the 50th percentile for weight at 30.4 pounds and continuing on in the tradition of both the Baloun and Toussaint families in the 80th percentile for height at 3' 2 & 7/8". As she did when Ellie was an infant, Wonder Woman declared her to be 'perfect.'
Ginny... we think she's perfect too, just as she is :) She is in the 40th percentile for weight at 18 pounds, 7 ounces. She has dropped off her previous growth curve, but only slightly and actually, Ellie did when she was G's age too. Besides, G still has rolls of chub on her wrists and ankles and what I call 'fat tan' around these rolls. LOVE IT! At 2' 4.25" tall, she's in the 60th percentile for height.
One one hand, this appointment reassured me that Ginny is still growing strong. On the other hand, it shattered the calm I had yesterday and now I'm feeling like I really need to get back to food trials. Poor John, I'm probably going to talk his ear off about it tonight, trying to figure out what to feed G next. Hope you all have more fun in store for you tonight than John does!
Wednesday, September 1, 2010
A day without food trials
Days without food trials are like... extra sunny days with a cool breeze and an ice cream cone. No worries. No measuring. No bag ready to head to the ER just in case. Today is like that, despite the overcast skies. Today, Ginny can just eat her safe foods and enjoy them and I can just feed her and enjoy watching her eat.
And speaking of eating, THE nicest thing happened to us the other day. We had a play date with friends (I'm talkin' 'bout YOU Tina) and the mom brought along freeze dried pears she had purchased at Costco as a snack for her kids. She said, "Ginny can still have pears, right? I thought she might be able to eat these." No added ANYTHING. Just freeze dried pears. So Ginny could eat them - and did. She snacked right along with the other kids. Ginny might not notice the difference yet, but I sure do and this - her getting to be just like the other kids- had me choked up. Furthermore, that my friend thought of this, knew what Ginny could eat, it was just so nice and thoughtful. Makes me choked up again thinking of it. There is so much I took for granted before that I just don't anymore. I have wonderful friends. Oh, and this might just get me to go out and purchase a Costco membership :)
We never made it to day 12 with the spinach trial, but called it safe around day nine. The thing is, we bought a big 'ol container of spinach and it steamed/pureed down to 11 teaspoons. So, when we got to feeding her 2 teaspoons of spinach at a time, it was like giving a 9 month old a pretty decent sized spinach salad. What 9 month old needs a spinach salad every day? So, now she gets a bit of it at a time (for the nutritional value) and when we have more foods, it will be great to add in for flavor and extra nutrients.
What next? I don't know. Although lots of kids do, Ellie didn't have meat until after she was a year old so I'm thinking of holding off on the lamb. Maybe quinoa? Maybe a pit fruit? Those are supposed to be pretty safe. Or maybe the white potatoes I was planning on initially. Partly, I'm thinking of changing our plan because of the patch test results. If soy was, in the end, a/the big reactor (that spot is STILL red and rough), perhaps it's just soy? Maybe rice (and maybe other grains) will be safe for Ginny. Maybe. Maybe not. I know that John thinks we should just avoid all potential major triggers. But I'd like to consider trying eggs.... again, maybe after Ginny is one.
Tomorrow we head to see Wonder Woman for a ten month check up (or a way-behind-schedule-nine-month-check-up). I'm very anxious to see where G lands in her growth percentiles. Surely, if we could just measure her based on the size of her feet, she'd be off the charts! So, for now, happy eating. If you don't have one yet, go get yourself a mesh feeder. Ginny sure seems to like it :)
And speaking of eating, THE nicest thing happened to us the other day. We had a play date with friends (I'm talkin' 'bout YOU Tina) and the mom brought along freeze dried pears she had purchased at Costco as a snack for her kids. She said, "Ginny can still have pears, right? I thought she might be able to eat these." No added ANYTHING. Just freeze dried pears. So Ginny could eat them - and did. She snacked right along with the other kids. Ginny might not notice the difference yet, but I sure do and this - her getting to be just like the other kids- had me choked up. Furthermore, that my friend thought of this, knew what Ginny could eat, it was just so nice and thoughtful. Makes me choked up again thinking of it. There is so much I took for granted before that I just don't anymore. I have wonderful friends. Oh, and this might just get me to go out and purchase a Costco membership :)
We never made it to day 12 with the spinach trial, but called it safe around day nine. The thing is, we bought a big 'ol container of spinach and it steamed/pureed down to 11 teaspoons. So, when we got to feeding her 2 teaspoons of spinach at a time, it was like giving a 9 month old a pretty decent sized spinach salad. What 9 month old needs a spinach salad every day? So, now she gets a bit of it at a time (for the nutritional value) and when we have more foods, it will be great to add in for flavor and extra nutrients.
What next? I don't know. Although lots of kids do, Ellie didn't have meat until after she was a year old so I'm thinking of holding off on the lamb. Maybe quinoa? Maybe a pit fruit? Those are supposed to be pretty safe. Or maybe the white potatoes I was planning on initially. Partly, I'm thinking of changing our plan because of the patch test results. If soy was, in the end, a/the big reactor (that spot is STILL red and rough), perhaps it's just soy? Maybe rice (and maybe other grains) will be safe for Ginny. Maybe. Maybe not. I know that John thinks we should just avoid all potential major triggers. But I'd like to consider trying eggs.... again, maybe after Ginny is one.
Tomorrow we head to see Wonder Woman for a ten month check up (or a way-behind-schedule-nine-month-check-up). I'm very anxious to see where G lands in her growth percentiles. Surely, if we could just measure her based on the size of her feet, she'd be off the charts! So, for now, happy eating. If you don't have one yet, go get yourself a mesh feeder. Ginny sure seems to like it :)
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