The score so far:
Livvy: pears, carrots and POTATOES!
FPIES: milk, soy, rice, oats, bananas and (probably) corn.
I am absolutely ecstatic over our pass of potatoes. If I wasn't so out of shape I'd do cartwheels across my front lawn. On second thought, perhaps that wouldn't be the best choice. The neighbors already think I'm certifiable. Nix that.
Oh, on the subject of being out of shape, (and my desire to get back into it) I have a small victory to report! I have had a happy baby! Livvy has been happy and content enough to let me strap her in the baby jogger and go running while L is in preschool. A few months ago this would have been unheard of. We'd have been half-way down the block and Liv would be losing her mind and screaming. Her time in between comfort nursing sessions was pretty short and to be able to jog and shower just wasn't possible. Such an improvement!
We are moving onward and upward! I really want to try coconut and quinoa. Both have SO many possibilities. Coconut milk, manna, oil, flour.. coconut ICE CREAM! Quinoa flakes, flour and all the baking and cooking possibilities! With coconut and quinoa I could rule the world! Ok, I'm getting ahead of myself here. Maybe that's going a touch too far. Perhaps we will (happily) settle for the possibility of having an ice cream treat the whole family can enjoy!
*fingers crossed*
*doing a dance*
*saying a prayer*
Thursday, March 29, 2012
Tuesday, March 27, 2012
Well, of course I do!
There is something, it seems, often said to parents of kiddos with FPIES.
I know it comes from a good and well-intentioned place.
'Well at least she should outgrow it, right? Betcha can't wait till then!'
While this is 'hopeful' and, again, I know its well-intentioned- it is also very insensitive to the fact that we are living with this NOW. Yesterday, tomorrow, and two weeks from now. FPIES will be part of our daily lives. Our family can't live in suspended animation until a magical time in Liv's development that she wakes up with a flashing neon sign on her forehead saying "OK, ITS ALL CLEAR! I'VE OUTGROWN FPIES! CALL FOR PIZZA AND CHINESE TAKE OUT- EXTRA RICE!"
Our daily lives can't revolve around a wish that 3-5 years from now Livvy will outgrow her issues. The fact is that, yes, she might absolutely wake up at age 3 on the dot and be free of FPIES. But what if she doesn't? Should I be disappointed if she doesn't? It is also quite possible that we will be dealing with multiple food allergies and everything that goes with it for many years to come. And you know what? That's just going to have to be OK. It is what it is, and its just part of Livvy right now.
Of course, I want desperately for my baby girl to be able to eat anything she darn well pleases. Of course I do! But that just isn't going to happen any time soon. We've got to make her daily life as flavorful and 'normal' as possible NOW. We are still in the beginning stages of trialing foods. We have several passes so far and I am thrilled! I want to her to grow up concentrating on what she CAN have not what she can't. If Livvy does outgrow some or all of her FPIES triggers, I will be forever grateful. If not, I will still be forever grateful- that we have a happy little angel of a girl that loves living life and giggling at her silly sister.
I know it comes from a good and well-intentioned place.
'Well at least she should outgrow it, right? Betcha can't wait till then!'
While this is 'hopeful' and, again, I know its well-intentioned- it is also very insensitive to the fact that we are living with this NOW. Yesterday, tomorrow, and two weeks from now. FPIES will be part of our daily lives. Our family can't live in suspended animation until a magical time in Liv's development that she wakes up with a flashing neon sign on her forehead saying "OK, ITS ALL CLEAR! I'VE OUTGROWN FPIES! CALL FOR PIZZA AND CHINESE TAKE OUT- EXTRA RICE!"
Our daily lives can't revolve around a wish that 3-5 years from now Livvy will outgrow her issues. The fact is that, yes, she might absolutely wake up at age 3 on the dot and be free of FPIES. But what if she doesn't? Should I be disappointed if she doesn't? It is also quite possible that we will be dealing with multiple food allergies and everything that goes with it for many years to come. And you know what? That's just going to have to be OK. It is what it is, and its just part of Livvy right now.
Of course, I want desperately for my baby girl to be able to eat anything she darn well pleases. Of course I do! But that just isn't going to happen any time soon. We've got to make her daily life as flavorful and 'normal' as possible NOW. We are still in the beginning stages of trialing foods. We have several passes so far and I am thrilled! I want to her to grow up concentrating on what she CAN have not what she can't. If Livvy does outgrow some or all of her FPIES triggers, I will be forever grateful. If not, I will still be forever grateful- that we have a happy little angel of a girl that loves living life and giggling at her silly sister.
Monday, March 19, 2012
Breastfeeding to Neocate: the switch
The beginning of December marked the end of breastfeeding little Liv. It probably was best to wait until now to write about this. I needed some serious time to reflect on the transition and for my hormones to level out. The hormonal insanity that ensues following a non-gradual weaning is brutal (just ask my poor husband!).
I was trying so hard to not only nourish Livvy, but to take care of her and L was exhausting. There was more than one occasion that I just sat down and cried because I felt like a complete failure. The question started coming in passing from folks 'oh, well why don't you just give her a bottle?'... the answer is that I was terrified by that point. If she couldn't tolerate breast milk I knew that any formula on a store shelf was sure to cause BIG problems. Not to mention, I'm a slightly 'crunchy' girl and try to eat as much organic and whole foods as possible and the thought of formula in general just made me cringe. I really thought I could gut it out and continue to nurse her. I felt like I was doing everything 'right' and yet my baby with the happy disposition would continue to morph into a screaming, flailing, spewing, mucus filled disaster on a regular basis. On top of it all she often suffered through blistering diaper rash. It was awful. One minute she was Ok, and the next she was screaming. That was right about the time that L would do something crazy to get my attention because it was being pulled in one (very loud) other direction.
You know- its possible that I could have done a total elimination diet and stuck it out if Livvy was an only child. That kind of diet would have most certainly been all-consuming. I am a mommy to TWO little girls who BOTH need me. I couldn't push one aside while spending all my time taking care of the other. As it is, enough time and energy is spent with Livvy pretty unfairly. I just couldn't do it anymore. I couldn't handle the stress that comes with being terrified that something I put in my mouth might cause days or weeks of misery for my baby. We desperately needed some sort of stability to Liv's diet- for all of us. Despite all my efforts, my baby was still a mess. I really felt like I was losing my grip. People would say to me that she looks fine and happy. Of couse she did. We wouldn't dare leave the house with her reacting to anything, and she was comfort nursing so often her weight was over the 90th percentile.
The starting point was our first Allergist appointment. Livvy had just reacted badly with rice cereal about a week earlier, and was still extremely 'needy'. I was supplying all of her calories and her comfort with constant nursing. I had so many things out of my diet and was dizzy from my body sucking so many nutrients out of itself trying to keep up with her demands. My foods were very restricted and yet it seemed like she was reacting more and more to whatever it was that I was still eating. Sort of like the harder I tried the worse she was getting. The entire situation was completely maddening. We were scheduled for a 90 minute appointment with the allergist. She listened to our entire history. Although my google doctorate had me all but convinced that we were dealing with FPIES, I was sure to not even mention it when we got in for our appointment. I wanted to know what was really going on with Liv- no matter what it was. The first sentence out of the allergist was, 'Well, I think she has food protein induced enterocolitis syndrome given her symptoms and history'. Its odd to feel relief when you get a diagnosis that involves an ongoing issue for which there is no cure. But It was a relief, I suppose, to get reassurance that there was something going on and I wasn't going crazy. This also meant we could start a plan to safely nourish Liv.
Knowing I had been exclusively breastfeeding, the allergist approached the formula subject gently. I nearly burst into tears in the exam room telling her that I just couldn't do it anymore and YES to PLEASE send us home with samples of elemental formula to try. I prayed that Livvy would tolerate one of them. I desperately needed my baby to start to feel better. Months of seeing mucus and blood in diapers and hearing tiny whimpers of pain while she was trying to sleep was taking a toll. A mommy just shouldn't have to deal with these things- This is not a scenario that was covered in any chapter of What to Expect When You're Expecting...
We started with 3-4 different bottles and a plan to stay home for several days to try to establish bottle feeding. The first day after only a small amount of formula it was very obvious that Livvy was feeling better than normal. Getting her to drink the formula wasn't fun. She was MAD. It tasted horrible and she wasn't at all used to eating out of a bottle. The following week I pushed a bottle at her about every half hour in hopes that she'd start to get used to it all. Honestly, it is a bit of a blur now. I was so stressed out wondering if the formula was going to stop being tolerated and if she was drinking enough. Probably about 10 days or so later I felt comfortable that not only were we tolerating the formula, but thriving with it. I also knew that if there was a choice of breast or bottle, baby girl would want the boob juice every time. I knew we needed to go cold turkey; both for the transition and because she was so much more comfortable on formula.
I took a deep breath and, with my hormones already crashing all over the place from only nursing about half of the normal amount, sat down to nurse my baby for the last time. I cried. Blubbered, really. As Oprah would say, I had an ugly cry. This was it and we weren't going back. After months of a pretty restricted diet, I marched myself into the kitchen and whipped myself up a box of macaroni and cheese. I knew that I couldn't nurse her after eating dairy since that was the worst trigger for her in my diet. I plopped down at my dining table with the whole pan of macaroni from the stove and ate the whole thing. Then I cried again.
It was a whirlwind couple of weeks following. My hormones were crazy, my baby was emotionally crazy, but physically doing MUCH better. I knew we had made the right decision for us; for our family. In the end, it really eased my stress level knowing that we had something to feed Livvy that would consistently be tolerated. We had crossed the first hurdle to safely nourishing our little Liv.
I was trying so hard to not only nourish Livvy, but to take care of her and L was exhausting. There was more than one occasion that I just sat down and cried because I felt like a complete failure. The question started coming in passing from folks 'oh, well why don't you just give her a bottle?'... the answer is that I was terrified by that point. If she couldn't tolerate breast milk I knew that any formula on a store shelf was sure to cause BIG problems. Not to mention, I'm a slightly 'crunchy' girl and try to eat as much organic and whole foods as possible and the thought of formula in general just made me cringe. I really thought I could gut it out and continue to nurse her. I felt like I was doing everything 'right' and yet my baby with the happy disposition would continue to morph into a screaming, flailing, spewing, mucus filled disaster on a regular basis. On top of it all she often suffered through blistering diaper rash. It was awful. One minute she was Ok, and the next she was screaming. That was right about the time that L would do something crazy to get my attention because it was being pulled in one (very loud) other direction.
You know- its possible that I could have done a total elimination diet and stuck it out if Livvy was an only child. That kind of diet would have most certainly been all-consuming. I am a mommy to TWO little girls who BOTH need me. I couldn't push one aside while spending all my time taking care of the other. As it is, enough time and energy is spent with Livvy pretty unfairly. I just couldn't do it anymore. I couldn't handle the stress that comes with being terrified that something I put in my mouth might cause days or weeks of misery for my baby. We desperately needed some sort of stability to Liv's diet- for all of us. Despite all my efforts, my baby was still a mess. I really felt like I was losing my grip. People would say to me that she looks fine and happy. Of couse she did. We wouldn't dare leave the house with her reacting to anything, and she was comfort nursing so often her weight was over the 90th percentile.
The starting point was our first Allergist appointment. Livvy had just reacted badly with rice cereal about a week earlier, and was still extremely 'needy'. I was supplying all of her calories and her comfort with constant nursing. I had so many things out of my diet and was dizzy from my body sucking so many nutrients out of itself trying to keep up with her demands. My foods were very restricted and yet it seemed like she was reacting more and more to whatever it was that I was still eating. Sort of like the harder I tried the worse she was getting. The entire situation was completely maddening. We were scheduled for a 90 minute appointment with the allergist. She listened to our entire history. Although my google doctorate had me all but convinced that we were dealing with FPIES, I was sure to not even mention it when we got in for our appointment. I wanted to know what was really going on with Liv- no matter what it was. The first sentence out of the allergist was, 'Well, I think she has food protein induced enterocolitis syndrome given her symptoms and history'. Its odd to feel relief when you get a diagnosis that involves an ongoing issue for which there is no cure. But It was a relief, I suppose, to get reassurance that there was something going on and I wasn't going crazy. This also meant we could start a plan to safely nourish Liv.
Knowing I had been exclusively breastfeeding, the allergist approached the formula subject gently. I nearly burst into tears in the exam room telling her that I just couldn't do it anymore and YES to PLEASE send us home with samples of elemental formula to try. I prayed that Livvy would tolerate one of them. I desperately needed my baby to start to feel better. Months of seeing mucus and blood in diapers and hearing tiny whimpers of pain while she was trying to sleep was taking a toll. A mommy just shouldn't have to deal with these things- This is not a scenario that was covered in any chapter of What to Expect When You're Expecting...
We started with 3-4 different bottles and a plan to stay home for several days to try to establish bottle feeding. The first day after only a small amount of formula it was very obvious that Livvy was feeling better than normal. Getting her to drink the formula wasn't fun. She was MAD. It tasted horrible and she wasn't at all used to eating out of a bottle. The following week I pushed a bottle at her about every half hour in hopes that she'd start to get used to it all. Honestly, it is a bit of a blur now. I was so stressed out wondering if the formula was going to stop being tolerated and if she was drinking enough. Probably about 10 days or so later I felt comfortable that not only were we tolerating the formula, but thriving with it. I also knew that if there was a choice of breast or bottle, baby girl would want the boob juice every time. I knew we needed to go cold turkey; both for the transition and because she was so much more comfortable on formula.
I took a deep breath and, with my hormones already crashing all over the place from only nursing about half of the normal amount, sat down to nurse my baby for the last time. I cried. Blubbered, really. As Oprah would say, I had an ugly cry. This was it and we weren't going back. After months of a pretty restricted diet, I marched myself into the kitchen and whipped myself up a box of macaroni and cheese. I knew that I couldn't nurse her after eating dairy since that was the worst trigger for her in my diet. I plopped down at my dining table with the whole pan of macaroni from the stove and ate the whole thing. Then I cried again.
It was a whirlwind couple of weeks following. My hormones were crazy, my baby was emotionally crazy, but physically doing MUCH better. I knew we had made the right decision for us; for our family. In the end, it really eased my stress level knowing that we had something to feed Livvy that would consistently be tolerated. We had crossed the first hurdle to safely nourishing our little Liv.
Thursday, March 15, 2012
I need to win the next Power Ball lotto
Seriously. I need to win the lottery.
I've got my 'cart' at Amazon loaded with special flours, snacks and ingredients. Lets just say the total is staggering for just a couple things. Granted, you've really got to buy things in bulk ordering from Amazon but its got to be cheaper than the gas to get to Whole Foods (just under 2 hours away) and paying their prices. BUT STILL.
Its days like this when the reality of FPIES smacks you (and your wallet) hard. I want nothing more than to give my little girl as much variety as her little body will safely allow. Its just that its insanely expensive to do so. I knew it would be. A couple years of dairy-free cooking for L gave me a peek at the fun and games awaiting us for the years to come with Livvy.
So if you see me on the street, don't bother asking to borrow a couple quarters for the parking meter or if I'd like to donate to X-Y-Z 'cause'. I won't have it. I've got freeze-dried pears and potato flour to buy.
I've got my 'cart' at Amazon loaded with special flours, snacks and ingredients. Lets just say the total is staggering for just a couple things. Granted, you've really got to buy things in bulk ordering from Amazon but its got to be cheaper than the gas to get to Whole Foods (just under 2 hours away) and paying their prices. BUT STILL.
Its days like this when the reality of FPIES smacks you (and your wallet) hard. I want nothing more than to give my little girl as much variety as her little body will safely allow. Its just that its insanely expensive to do so. I knew it would be. A couple years of dairy-free cooking for L gave me a peek at the fun and games awaiting us for the years to come with Livvy.
So if you see me on the street, don't bother asking to borrow a couple quarters for the parking meter or if I'd like to donate to X-Y-Z 'cause'. I won't have it. I've got freeze-dried pears and potato flour to buy.
Sunday, March 11, 2012
Good Vibes, Pretty Thread, and Potatoes
Carrots are a pass! I had fingers crossed and held my breath (I might have done a few other silly things too), but we had no problems with them at all! Livvy has come to the point that she gets excited to eat them. Such a long way from her crying hysterically while I was trying to feed her pears and bananas (evil) just a few weeks ago.
We've also had very good early luck attempting a switch from Neocate Infant with DHA/ARA to Neocate Jr Vanilla with prebiotics. From what I've gathered from various support boards, many sensitive kiddos are having issues with the DHA/ARA. Its a new formulation for the company, and frankly, I can't for the life of me figure out why they would change it. The babies that rely on elemental formulas are on them because their systems are so fragile they can't tolerate anything else. That can of powder is the only thing standing in between their health thriving or failing. Why mess with a good thing? So we're trying the Jr, and Livvy seems to be tolerating it very well thus far. We were doing generally well on the Infant, but Livvy's sleep was sort of restless. Nothing like when we were breastfeeding or if she's reacting to a food, but I just couldn't fight the thought that 'something' was a bit off. A couple days into the Jr she's sleeping much more peacefully. Its nice to see. She's never really slept peacefully unless we were holding her. It just confirms that a mother's intuition IS right- Liv wasn't sleeping well on her own because she was 'spoiled' (OH BOY could I write a whole stinkin post about that one...), she wasn't sleeping well because her tummy was still a bit upset. The medical supply company is getting insurance authorization for a longer trial of that formula to be sent for us to continue to test it beyond the smaller sample I was able to get from the allergist. In the meantime, I've been going back to the Infant since we ran out of the Jr sample. Her sleep is noticiably different and not for the better. We have a good feeling about this Jr formula working out well for baby girl.
In other news, I've managed to sit down at my sewing machine a bit the last few days. I find sewing very relaxing, oddly enough. The girls have a few tops already, and I've got a stack of things waiting in the wings to get going. I might have to post a few pics soon. Everything is adorable. My little models are pretty cute too. Its amazing how productive I can be once experiencing the luxury of a little bit of sleep.
Moving along, we are beginning a trial for white potatoes. I want potatoes to be a pass soooooooooo badly. There's a whole world of food possibilities once we have potatoes. So here we go again with the holding of my breath, saying a prayer, doing a rain dance, and jumping up & down while patting my head and rubbing my tummy. Don't judge me... it worked for carrots... hehehehe
Monday, March 5, 2012
I've got a bone to pick
Ok, FPIES- I've got a bone to pick with you... You are SERIOUSLY cutting short my crafting time. Specifically, there are several yards of beautiful Amy Butler fabric and other assorted goodies waiting for an overdue date with me and my sewing machine. There's two little girls in this house that need cute tops, tunics, and dresses and I'll be damned if I spend the ridiculous amount of money needed to purchase those kinds of things in a store. If my Livvy can't have a birthday cake, she surely is at least going to have a very cute dress to wear for the occasion!
As it is right now between L having an ear infection (read: didn't finally fall asleep until 1am) and Livvy's sleep patterns only being that she has no pattern, I'm flipping tired. It could be potentially quite dangerous to sit down to my sewing machine and serger. I mean, an electrically powered device that has a punching set of needles and razor sharp scissor blades combined with excessive tiredness just doesn't sound like good times.
There's plenty of 'important' reasons FPIES might just cause me to go gray. But honestly, today, with those lovely prints on that fabric speaking to my creative side... well... This FPIES business just puts a serious cramp on my style. Or, more appropriately- my kids' style.
NOTE: This is intended to be my stab at being mildly humorous, and not a reflection of the seriousness that is our FPIES situation. Thx.
:-)
As it is right now between L having an ear infection (read: didn't finally fall asleep until 1am) and Livvy's sleep patterns only being that she has no pattern, I'm flipping tired. It could be potentially quite dangerous to sit down to my sewing machine and serger. I mean, an electrically powered device that has a punching set of needles and razor sharp scissor blades combined with excessive tiredness just doesn't sound like good times.
There's plenty of 'important' reasons FPIES might just cause me to go gray. But honestly, today, with those lovely prints on that fabric speaking to my creative side... well... This FPIES business just puts a serious cramp on my style. Or, more appropriately- my kids' style.
NOTE: This is intended to be my stab at being mildly humorous, and not a reflection of the seriousness that is our FPIES situation. Thx.
:-)
Sunday, March 4, 2012
*SIGH* relief. Well, for now anyway.
We have a few positive things to report from the last few weeks. I'm feeling a bit less terrified than a few weeks ago after our miserable ending to the banana trial. Soon afterward she also came down with a cold. She's never had a cold or been otherwise sick at all... apparently many kiddos with FPIES are rarely sick. Interesting. Anyway, because of the cold and crankiness and possible poo looking funny because of it, I delayed starting our carrot food trial. Being able to notice some signs of a food fail before it gets 'bad' is important. The worse the reaction, the longer it will be before she is recovered enough to try something else. As it was, it took nearly two weeks for Liv's demeanor and sleep to return to normal following about three days of being miserable and hardly leaving my lap.
I'm happy to report that so far so good with carrots after about a week. We are still going to continue for a few more days before I am comfortable, but there's absolutely no signs of any issues so far. None. Even bigger news, though, is that she's happily feeding herself small pieces and seems to like it. Pears and bananas I had to literally shove down her throat with the spoon because she wanted NO part of it. There was serious fear on my part that we were going to end up doing therapy to overcome this food aversion business. So I am THRILLED that she's feeding herself. Our dog is pretty psyched too. With all the food bits flying off the high chair tray, I think he's finally starting to forgive me for bringing another tail puller home. Ha!
We also had another visit with our allergist. I just love her. She's personable, informed, and (this part is important) admits that she doesn't know EVERYTHING, and has told us that if Livvy's case gets complicated she'll refer us up to CHOP. *** stepping on soap box *** I completely respect the amount of time and effort that goes into the higher education of physicians and other medical professionals. But some of them believe that they surely know everything and that they understand what is going on with your kid better than you do. I've had more than one give me pretty crummy advice that prolonged misery of my child, and they'll have to forgive my hesitance to accept their words as gospel. *** exiting soap box now *** Ahem. Anyway. So we saw the allergist and our next food to try is white potato. I'm pretty excited about this for a few reasons. For one, it seems like statistically it should be an easier 'pass'. For the other, I can do fun things like make oven fries! Yummy finger food! I don't know if I can adequately explain my excitement over the possibility of tasty finger food, but believe me, I'm stoked. A little piece of something 'normal' to give to my baby girl is very exciting... there's so many 'normal' things she doesn't get right now.
So I'm praying, hoping, and keeping fingers & toes crossed that carrots continues to go well and that white potato is Ok :) For this moment in time, we're on a small up-swing on this FPIES roller coaster.
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