The past month or so Cutie Pie has been refusing to eat. It seemed to start with her quinoa fail. Even after she wasn't showing fail symptoms anymore, she was still refusing to eat food. When we offered purees she would clench her jaw shut, shake her head, and cry. If we did manage to get food into her mouth, it was immediately scraped off her tongue with her teeth and spit back out. Finger foods were immediately thrown on the floor. Once in a while she would lick or suck on something, or even chew on it but it would always end up back in her lap or on the floor. We tried more distractions, less distractions, sweet foods, savory foods, bigger pieces, smaller pieces. Nothing. What can I say, she is stubborn. I really think she was simply afraid of food. I don't really blame her - so much has hurt that little tummy in her short little life! I'd be afraid to eat too!
But Monday evening something amazing happened - Cutie Pie ATE. We went to my grandmother's house for dinner and she happened to have a bowl of watermelon slices. Cutie Pie was reaching for one like it was calling her name, so we figured why not. We had attempted to trial watermelon and even though she didn't eat a ton we called it a pass. So I just gave her a whole slice and she ATE IT. Like, the whole thing. Just sat in the chair and gnawed on it till it was gone. She was soaked with juice and grinning like a crazy person. So I gave her an egg yolk - and she ate a couple bites of that. Then I gave her a slice of avocado and she ate that too! I felt like jumping up and down and taking a video of this momentous occasion! It was like all of a sudden she trusted food to not hurt her again. The last few days have been super exciting. I fried her up some potato pancakes (thawed hashbrowns, potato flour, an egg, and a little breastmilk) and she ate it. This week we are trialing coconut and she has been snacking on the flakes and eating her Cheecha puffs with coconut manna spread on them. It is almost like having a normal kid - if normal kids ate things like coconut manna.
In other news, I am down another five pounds. It is almost scary how fast I am dropping the pounds. Don't get me wrong, it is nice being down to a weight I haven't seen since college, but it can't be healthy. I am starting to notice things like my nails are more brittle and my hair is falling out and my skin is paler than usual. I think I am probably missing some crucial things in my diet, and I am afraid I am setting myself up for some future problems. Not to mention that there is no way I can keep up this weight loss once I eventually go back to a normal diet. No way am I keeping this up a day longer than I have to! I am thinking about going to see a nutritionist so I can make sure I am getting what I need and maybe they would be able to help me get Cutie Pie a balanced diet so she won't still need to drink my milk when I send her off to her first day of school! Plus, those two boxes of Girl Scout cookies I have stashed away are calling my name pretty loudly these days.... I'd like to be able to eat them before next year's batches are up for sale!!
Wednesday, May 30, 2012
Wednesday, May 23, 2012
ONE THOUSAND
My blog hit 1,000 views today. I cannot believe it. ONE THOUSAND people have looked at this blog. My online rants and raves and whining and fears have been read. By strangers. A lot. Thank you!
Tonight was our church's women's ministry meeting. It is just about one of my favorite nights of the month. My husband comes home from work on time and I get to go sit with a group of other like-minded moms and talk and laugh and pray and just feel normal. No one asks about FPIES. People talk to me because they want to know about ME and not just about my kids. It is amazing to feel like a human being instead of just being Cutie Pie or Big Brother's mom. Doesn't happen very often. You know?
Our lesson today was about being grateful. So often (and I am soooo guilty of this!) we complain and we whine about problems without being grateful for the bigger things. Of course my mind went straight to FPIES. I hate FPIES. I have even posted about being mad at God over it. But you know what? I often forget that I have a beautiful, sweet, loving, smart little girl in my arms. She may spend a lot of time being sick, but she is my beautiful Cutie Pie. Mine. God gave me a HUGE blessing when he gave her to me. Six years ago I didn't think I would ever be a mom at all. My doctors told me I had a hormone imbalance and suspected I might have something called Polycystic Ovarian Syndrome. She told me it wasn't a huge deal, but it did usually cause problems getting pregnant so when it came time for me to want children I may have difficulty. Considering I was 22 at the time, not married, and had no desire to have children anytime soon, she didn't think it was a big deal. But I did. I was terrified from that moment that I wouldn't live my life dream to be a mommy. I always knew being a mom was my heart's desire and God had promised me to be the mom of many. And you know what? He followed through. Neither of my children were hard to conceive. I have been blessed. And I am so grateful that He has given me these babies. Doesn't make FPIES any easier to deal with, but I'd much rather have kids with issues than no kids at all.
Tonight was our church's women's ministry meeting. It is just about one of my favorite nights of the month. My husband comes home from work on time and I get to go sit with a group of other like-minded moms and talk and laugh and pray and just feel normal. No one asks about FPIES. People talk to me because they want to know about ME and not just about my kids. It is amazing to feel like a human being instead of just being Cutie Pie or Big Brother's mom. Doesn't happen very often. You know?
Our lesson today was about being grateful. So often (and I am soooo guilty of this!) we complain and we whine about problems without being grateful for the bigger things. Of course my mind went straight to FPIES. I hate FPIES. I have even posted about being mad at God over it. But you know what? I often forget that I have a beautiful, sweet, loving, smart little girl in my arms. She may spend a lot of time being sick, but she is my beautiful Cutie Pie. Mine. God gave me a HUGE blessing when he gave her to me. Six years ago I didn't think I would ever be a mom at all. My doctors told me I had a hormone imbalance and suspected I might have something called Polycystic Ovarian Syndrome. She told me it wasn't a huge deal, but it did usually cause problems getting pregnant so when it came time for me to want children I may have difficulty. Considering I was 22 at the time, not married, and had no desire to have children anytime soon, she didn't think it was a big deal. But I did. I was terrified from that moment that I wouldn't live my life dream to be a mommy. I always knew being a mom was my heart's desire and God had promised me to be the mom of many. And you know what? He followed through. Neither of my children were hard to conceive. I have been blessed. And I am so grateful that He has given me these babies. Doesn't make FPIES any easier to deal with, but I'd much rather have kids with issues than no kids at all.
Monday, May 21, 2012
Birthday Blues
Cutie Pie is officially ten months old. I cannot believe how fast the time has gone. I have several other friends with kids around my daughter's age and they are all busy planning first birthday parties, and as excited as I am for them I am equally sad for us. I don't think we are going to even attempt a birthday party for Cutie Pie. I don't think it is fair to invite a bunch of people over to our house (we don't have family in the area, so if family were to come it would be for more than a short party) and serve them a bunch of food that Cutie Pie nor I can eat. And then there is the problem of the birthday cake. As of right now, we have no ingredients to make a cake and get those precious cake smash photos. I have seen several ideas on how to sculpt watermelon into a "cake" which I do plan on doing, although despite dedicating 10 days to trialing watermelon with Cutie Pie she never would eat enough to actually declare it a pass or fail. But it's just not the same. Plus, I feel like a lot of our friends and family do not really understand what we are up against with FPIES, and honestly there are days when I don't understand it myself. I hate answering a million versions of the same questions and hearing a ton of those stupid 'I'm-trying-to-be-supportive-but-I-don't-know-how" comments. My favorite comment of all time is this:
Maybe she'll outgrow it.
Maybe, maybe not. She might grow out of all or some of her triggers. She might not. No one really knows. What we do know though, is that when she turns three we will do in-hospital trials of her biggest triggers with an IV in place just in case. Have you ever watched them put an IV in a three year old? I have. It is not fun. Nor would it be fun if she hasn't outgrown it and ends up puking herself into shock. And although it is possible she would be fine, right now she is very sick. Right now. You know. Today, tomorrow and next month we will still be dealing with this. And it sucks. A lot.
But you know what? She is still the cutest baby I've ever met. She is smart and sweet and stubborn as hell. and I love that little girl and would do this all over again just to be able to have her in my arms. And just because I can, I'll show you just how cute this FPIES cutie is!
Maybe she'll outgrow it.
Maybe, maybe not. She might grow out of all or some of her triggers. She might not. No one really knows. What we do know though, is that when she turns three we will do in-hospital trials of her biggest triggers with an IV in place just in case. Have you ever watched them put an IV in a three year old? I have. It is not fun. Nor would it be fun if she hasn't outgrown it and ends up puking herself into shock. And although it is possible she would be fine, right now she is very sick. Right now. You know. Today, tomorrow and next month we will still be dealing with this. And it sucks. A lot.
But you know what? She is still the cutest baby I've ever met. She is smart and sweet and stubborn as hell. and I love that little girl and would do this all over again just to be able to have her in my arms. And just because I can, I'll show you just how cute this FPIES cutie is!
Thursday, May 17, 2012
I Feel So Alone....
Want to know what I have learned recently? FPIES is a lonely disorder. It sucks. Everyone around me goes on with their normal life - eating whatever, doing whatever, eating whatever. They joke about Cutie Pie's chunky thighs and her pudgy cheeks. They comment about what a butterball she is. They mention that I look great having lost so much weight (SIXTY pounds since Cutie Pie was born!). They smile, they chit-chat about what they are making for dinner, they bring peanut butter sandwiches and cookies and pasta salad to picnics at the park. They go out to eat. But what they don't know is what we go through on a daily basis - and by we I really mean me. I am the one chained to my breast pump five times a day for 20 minutes each pump session. That makes over an hour and a half each and every day I am pumping. I am the one who can't eat popcorn at the baseball game, or get ice cream from the neighborhood ice cream truck, or enjoy a simple slice of pizza. Cutie Pie doesn't know what she is missing out on but I do. I am the one that sits on the computer for hours on end talking to other FPIES moms or doing research on how to help her eat or what foods are least likely to cause a reaction. I am the one who is spraying out mucus filled diapers. I am the one getting grey hair before my 30th birthday. Me, me, me.
I know it sounds so selfish and maybe I'm feeling sorry for myself these last few days. I know it's not me who is puking violently with every trigger food reaction, or up crying for hours on end in the middle of the night because I am in pain. I know Cutie Pie has it worse off than I do right now, but the truth is that she doesn't know any better. For all she knows, this is how every little almost 10 month old girl is. And in all likelihood (and by the grace of God) she will outgrow this crazy disorder before she is old enough to remember. But I will. I will always remember it. I will always know the sacrifices I have had to make for her - and how much I loved her to be willing to do it. But for just one day. Just one day I want someone else to do it. Someone else to deprive themselves of the good stuff. Pump. Worry. Stress. About a week ago my wonderful (yet blissfully naive) husband looked at me and said, "Wouldn't it suck if we both had to give up all those foods?!!?". No, actually that would be wonderful so I wouldn't feel so freakin' alone in this. I love my husband, don't get me wrong but he leaves all this "stuff" to me. He hasn't even as much as read one research article about FPIES. It's all on me. Up until Cutie Pie failed quinoa with a big pukey mess he didn't even really believe she for sure had FPIES. He's not much of a support system. He loves me, he works so hard for our family, but he is slightly lacking in the support department.
Thank God for the Internet. For the mommies I have met on facebook and Babycenter. For other FPIES blogs. Even for the people who read this blog. I just saw I've had almost 900 views! (And just FYI- not a single one of those views is from my husband. I've told him all about my blog and he's never even asked for the address). Never in a million years would I have thought that this blog would be anything more than therapeutic rambling from me. So, thank you for reading. I mean it.
I know it sounds so selfish and maybe I'm feeling sorry for myself these last few days. I know it's not me who is puking violently with every trigger food reaction, or up crying for hours on end in the middle of the night because I am in pain. I know Cutie Pie has it worse off than I do right now, but the truth is that she doesn't know any better. For all she knows, this is how every little almost 10 month old girl is. And in all likelihood (and by the grace of God) she will outgrow this crazy disorder before she is old enough to remember. But I will. I will always remember it. I will always know the sacrifices I have had to make for her - and how much I loved her to be willing to do it. But for just one day. Just one day I want someone else to do it. Someone else to deprive themselves of the good stuff. Pump. Worry. Stress. About a week ago my wonderful (yet blissfully naive) husband looked at me and said, "Wouldn't it suck if we both had to give up all those foods?!!?". No, actually that would be wonderful so I wouldn't feel so freakin' alone in this. I love my husband, don't get me wrong but he leaves all this "stuff" to me. He hasn't even as much as read one research article about FPIES. It's all on me. Up until Cutie Pie failed quinoa with a big pukey mess he didn't even really believe she for sure had FPIES. He's not much of a support system. He loves me, he works so hard for our family, but he is slightly lacking in the support department.
Thank God for the Internet. For the mommies I have met on facebook and Babycenter. For other FPIES blogs. Even for the people who read this blog. I just saw I've had almost 900 views! (And just FYI- not a single one of those views is from my husband. I've told him all about my blog and he's never even asked for the address). Never in a million years would I have thought that this blog would be anything more than therapeutic rambling from me. So, thank you for reading. I mean it.
Sunday, May 13, 2012
Today is Mother's Day. My first Mommies Day with two babies and my first Mommies Day as an FPIES Mom. It has been a glorious day. Being a mom is the one thing in my life that I really have felt like I am good at and the only "job" I've had that makes me really happy. Even with the frustrations and hardships, being a mom rocks.
This morning we went to church like every other Sunday morning. I love our church and our pastor - I always leave with a deeper understanding of myself and today was no different. Today the message was about looking to God for the "Big Picture" in our trials. About looking beyond what is hard and hurtful now to see what God is trying to teach us or how He is using this episode in our lives to move us into a position where He can use us. I've felt this way a lot lately about this journey with FPIES. I know God is trying to teach me something, but I don't think I yet know what that lesson is. I have met some amazing moms through Babycenter and Facebook FPIES support boards. I have learned a LOT about food and diet and nutrition. But I have the sense that God isn't done teaching me yet, so I will sit patiently and work diligently to try to see the big picture through all of this. I trust God has a purpose, and I know He loves Cutie Pie even more than I do and doesn't want to see her suffer any more than I do.
In other news, we are backing off of our beef trial. Cutie Pie won't eat it. She will put pieces of meat into her mouth and sucks on it, but won't actually chew and swallow it. I'll keep offering it to her and just hope for the best. I've got to find something she will actually eat - like put in her mouth, chew, swallow, and repeat. So far the only food she is happy with is Checha puffs. We are faaaaaaaar from having a well rounded diet. So screw nutrition, screw the anemia, screw the lack of protein - this week we are going for watermelon. As a family we eat a ton of watermelon each summer since it is so good and so cheap. I just pray she will actually EAT it. We'll see how it goes I guess....
This morning we went to church like every other Sunday morning. I love our church and our pastor - I always leave with a deeper understanding of myself and today was no different. Today the message was about looking to God for the "Big Picture" in our trials. About looking beyond what is hard and hurtful now to see what God is trying to teach us or how He is using this episode in our lives to move us into a position where He can use us. I've felt this way a lot lately about this journey with FPIES. I know God is trying to teach me something, but I don't think I yet know what that lesson is. I have met some amazing moms through Babycenter and Facebook FPIES support boards. I have learned a LOT about food and diet and nutrition. But I have the sense that God isn't done teaching me yet, so I will sit patiently and work diligently to try to see the big picture through all of this. I trust God has a purpose, and I know He loves Cutie Pie even more than I do and doesn't want to see her suffer any more than I do.
In other news, we are backing off of our beef trial. Cutie Pie won't eat it. She will put pieces of meat into her mouth and sucks on it, but won't actually chew and swallow it. I'll keep offering it to her and just hope for the best. I've got to find something she will actually eat - like put in her mouth, chew, swallow, and repeat. So far the only food she is happy with is Checha puffs. We are faaaaaaaar from having a well rounded diet. So screw nutrition, screw the anemia, screw the lack of protein - this week we are going for watermelon. As a family we eat a ton of watermelon each summer since it is so good and so cheap. I just pray she will actually EAT it. We'll see how it goes I guess....
Wednesday, May 9, 2012
I Scream for Ice Cream
I took the kiddos to a local baseball park today for a free game. It was a beautiful spring day - perfect for wondering around and watching baseball. An added bonus is that this local baseball organization is sponsored by an ice cream company and there is always free ice cream cones available. Free. No cost. When does that ever happen in real life? Someone just sitting there in an ice cream truck handing out cold, delicious, creamy, ice cream cones. With sprinkles. Or dipped in chocolate. Big brother got a chocolate cone with rainbow sprinkles. He ate every last bite while I jealously sat there and watched. I drooled. I cursed FPIES in my head, and I vowed to come back to every baseball game next season just so I could eat a free ice cream cone for every one that I will miss this season. That has been my secret weapon against my strict breastfeeding diet these last few months. Can't have candy at Easter? Well then I'll just buy a couple bags of Snicker eggs and stash them in the pantry. They will keep the two boxes of Girl Scout cookies company until I can eat freely. I can't really store ice cream for that long, but dang it - next year it is ON. :)
In happy news, this stupid "diet" has really forced me to drop the pounds. Today I slipped into a new pair of size 10 jeans fresh out of the dryer and they FIT. Not only did they fit, they were even a little bit on the big side! I haven't seen a size 10 since before I graduated college. I wouldn't be surprised if I was down to an 8 by the time Cutie Pie turns one. Now that would be something to be excited about!
In happy news, this stupid "diet" has really forced me to drop the pounds. Today I slipped into a new pair of size 10 jeans fresh out of the dryer and they FIT. Not only did they fit, they were even a little bit on the big side! I haven't seen a size 10 since before I graduated college. I wouldn't be surprised if I was down to an 8 by the time Cutie Pie turns one. Now that would be something to be excited about!
Wednesday, May 2, 2012
I Wish I Lived in Canada.
Two days ago in the mail I got a wonderful surprise. A bill from our local Children's hospital - from the day Cutie Pie was born. She is almost 10 months old now and I am still getting bills from her birth. Great. I called and just told them to add it on to our running tab (I thought it was a funny joke - the lady on the other end did not seem amused). Then yesterday I got a letter from our insurance company saying they would not cover our chiropractic care expenses since FPIES was not a legitimate reason to go to the chiro. Treatment is "experimental" and I needed to consult with her doctors on the "appropriate" way to manage her disease. That pissed me off enough - how dare you tell me what is "appropriate" care for my daughter! It's not like I was asking them to pay for a witch doctor. I bet the doctor that reviewed her charts never even heard of FPIES. Now we are left with another $400 worth of medical bills that has to come out of our pocket. I'm sad to say that on Monday night when Cutie Pie started her puking I was terrified - not only because she was puking, but I was afraid we would need to take a trip to the ER that we can't afford. Isn't that sad? I am worried about my child's medical condition but afraid to seek treatment because it is SO DANG EXPENSIVE. Something is wrong about this picture! I don't pretend to know the solution, but sheesh.
I think I'm going to move to Canada.
I think I'm going to move to Canada.
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