Wednesday, August 25, 2010

No spinach today.... just a rant

Ginny has a cold. She also has a low grade fever. I don't think it's FPIES related, by the way, just a summer cold or teething or (let's hope not but...) even an ear infection coming on. But, she has a cold so she has little interest in eating anything. Not even pears this morning. Sigh....

Bad for Ginny, good for me. Why? It gives me a break from writing about Ginny's eating to go on a good 'ol fashioned rant. That's right. Have a seat, sit back, grab a drink (I like coffee and Bailey's - but it's a bit early in the day for that) and listen to me rant about doctors and hospitals and medical politics....

I'm feeling a little alone with FPIES. I have loads of online support and we love Wonder Woman and Boy Wonder is alright but still... an expert or veteran, in person, would rock. John thinks we don't need one. I disagree. I want advice or input I can really lean on, ya know? Something with solid credentials behind it so I don't feel like I'm losing my mind. Someone to answer questions and reassure us and maybe even tell us those things that we don't even know that we don't know. (Read it again, it will make sense eventually.) So I've been searching and searching and searching and, unfortunately, striking out.

Tuesday, August 24, 2010

Our 2nd Food Trial: Spinach, Day 7 (Is it really only day 7? And a revision of the patch test results)

Okay, let's see... Thursday, 1 full teaspoon of spinach. Friday, 1 full teaspoon of spinach and Saturday and Sunday we were camping with friends so... no spinach. How do you bring frozen, pureed spinach camping? We couldn't figure it out so, instead, we brought whole, fresh, ready to eat pears and G enjoyed them via the mesh feeder.

As a matter of fact, G enjoyed the pears AND the camping - we all did! The weather was great, the company (four other families camped with us for a total of ten adults, five 3 year olds and three 6-10 month olds) was truly enjoyable, the bugs were fun to look at and weren't biting us, the s'mores were sticky and the beer was cold. We've known all the 'older' kids since they were all about 8 months old and it's been so fun to watch them grow -and fun now to watch them with the younger kids. Sort of. I love each of them as I love my own kids but, to be honest (sorry Momfia!) I did have some moments of panic this weekend. On one hand, it was so sweet to see Owen wanting to share a kiss with Ginny - but seeing him do it when he had a milk mustache was a little scary. Olivia keeps asking for a baby sister of her own and is wonderful with G, sharing kisses and hugs- and almost her English muffin. Yikes! They're just kids. Ellie is the same way and we've explained repeatedly how food can make Genevieve sick. Part of me has accepted that there will accidental ingestion someday - and the other half of me continues to watch Ginny like a hawk; swooping down to remove the slightest bits of food from her grasp. I know I must seem crazy. Those two halves of me will, most likely, be at war for years to come. I hope you'll all forgive me for this bit of madness. It could be worse I suppose. Haven't you seen the crazy cat lady from the Simpson's? I'm not THAT bad.

Thursday, August 19, 2010

Our 2nd Food Trial: Spinach, Day 4 (and some test results...)

This morning we upped the quantity of spinach for our trial to one teaspoon. To be honest, Ginny was a little less interested in the spinach this time (and you know I don't blame her), but she ate it just the same. I believe that her lack of enthusiasm is partly my own doing. Last night, as she sat in her high char while the rest of us ate dinner, I went a little crazy. Again. It's so obvious when she fusses while we eat that she just wants food... and it got me thinking (and I just want to feed her)... We had pears perfectly ripe for making baby food so, I jumped up, cut off a chunk of ripe pear, put it in her mesh feeder, and handed it over. Although she wasn't sure about this at first (and I had a slight moment of hesitation and fear wondering if she would react differently to fresh pears than she did to roasted, pureed pears), she eventually waved her arms around, laughed, smiled, mashed up the pears with her two teeth and gums, and enjoyed every strained morsel. So I think, having had fresh and yummy pears, spinach might have been a little less appealing this morning.

As soon as the spinach was gone, we were out the door for an early morning appointment with the allergist to check on the results of Ginny's patch testing. The patch was dramatically removed and revealed... wait for it.... nothing. Absolutely nothing. At the most, when we looked at it again later today, the soy area is slightly red. Slightly red. Milk and eggs showed nothing. NOTHING. Soy is SLIGHTLY red. SLIGHTLY. I know that these tests are not considered incredibly accurate or conclusive but I'm so tired of not knowing so much that I thought this test would tell me something. I got nothing.

I had an incredibly long discussion with the allergist about what this means and/or doesn't mean or what it tells us or doesn't tell us. I worried that this means that FPIES isn't the right diagnosis for Ginny. I considered just feeding her rice cereal to see what happens so I know SOMETHING. I considered speeding up/shortening all her food trials. But, at the end of the day, this changes nothing. I will change nothing. We know nothing more. I am simply more frustrated. Angrier at this beast. Stuck crawling forward at this snails pace wondering when we'll hit a land mine and trigger another reaction. I just wanted something that felt more concrete. I got nothing.

At the most, this gives us hope that we might consider trialing milk and eggs sooner after G's first birthday. I should be happy for these results I guess. At the best, this could mean that rice is her only big trigger. I should feel happy. Ginny is healthy and happy. Looking at her and the rolls around her wrists and ankles, no one could possibly guess what she's been through. Instead, I feel beaten today. It's exhausting when it's difficult to simply feed your child.

Wednesday, August 18, 2010

Our 2nd Food Trial: Spinach, Day 3 (WITH PICTURES!)

There isn't much to say. Spinach, day 3. 1/2 teaspoon in - and all over her face and hands - followed by an ice cube in her mesh feeder so I can stay at the table and get Ellie to finish eating too. One happy mom. Two happy girls. Oh, and some pictures....

Ginny's patches - can you see the M, E and S for milk, eggs and soy?

Yes, Ginny LOVES spinach!

Just because... I'm sharing this picture of my Eloise. Friends gave her this WONDERFUL hand-me-down princess bike. We got it all tightened up, added training wheels and she is in absolute HEAVEN. She is a great rider - a little too fearless for my taste- and, of course, loves to wear the oh-so-stylish helmet she picked out herself. Crazy little fashionista. No, she probably doesn't NEED a helmet just yet. Yes, she saw it in the store, HAD to have it and wore it until going to bed that night.

Tuesday, August 17, 2010

Our 2nd Food Trial: Spinach, Day 2 (and a visit with the allergist)

I thought that yesterday was a fluke. I thought that today, when Ginny saw the spinach again - and tasted the spinach again- she'd change her mind. Nope. I buckled her into her seat and had to walk back to the kitchen to get her 1/2 teaspoon of pureed spinach, and as soon as I turned my back without having fed her, she went NUTS. The girl just wants to eat. So she wolfed down her bit-o-spinach in record time and followed it up with an ice cube in her mesh feeder while I wolfed down my cereal and coaxed Ellie through her sleepy, painfully slow, easily distracted morning meal.

Once again, so far, so good. No scary diapers. No hiccups. No crazy gas or cramps. No reflux and, best of all, no vomiting. It would be amazing to start our food trials 2 for 2. It would be amazing and, to be honest, all the credit would go to the moms who have done this before us. The list of foods we're trying first- pears, spinach and lamb - have all been suggested by other FPIES moms. I love Wonder Woman and am really growing to like Boy Wonder more every day, but it has been the other FPIES moms I've 'met' via internet communities that have educated us, answered questions, calmed our fears and kept us from feeling crazy, lost and alone. So, our hats are off to all of you. We thank you. You rock :)

In addition to the spinach trial, we are also in the midst of a patch test for Ginny. Monday afternoon we visited Boy Wonder who applied small, watch battery sized 'patches' of soy, eggs and milk to Ginny's back. The patches will stay there until Thursday. (Our internet is down at home and I'm using the internet at a friends' house and don't have my camera so can't upload the picture of this now, but will soon!) As far as I can tell, the patches don't bother Ginny in the slightest. She doesn't even seem to know they're there -although Eloise is BEYOND crazy curious and dying to mess with them. This test is by no means foolproof and, recently, we've read that the results are more like 50% accurate instead of the 95% we'd heard before, but I'm still anxious to see the outcome. If any of the patches leave horrific marks, we'll know that food should absolutely be avoided. Should the skin not react at all, or react only slightly, we may consider trialing that food. Or not. Or maybe. Really, I don't know. In some ways, I just felt like we needed to keep making forward progress and trying SOMETHING to work out pieces of this FPIES puzzle.

So that's the news. If Comcast has us up and running tomorrow (are any of you laughing because you have Comcast and know it sucks too?!) I'll post pictures of Ginny's patches. Now, all together, everyone wish my Dad a Happy Birthday. Happy Birthday Dad! I'm hoping he got more than a 1/2 teaspoon of spinach to celebrate.

Monday, August 16, 2010

Our 2nd Food Trial: Spinach, Day 1

This weekend was... well...a weekend. When it's just mom and the girls, the girls nap. We go places and do things and have fun but, for the most part, we organize these things around making sure that G gets one solid nap each day and Ellie gets some down time too. When it's the weekend and Dad is home, all bets are off. A BBQ with friends, a movie in the park that didn't even start until 8 and the airshow were all fun, but left the girls absolutely wiped out.

So... Ellie slept until 8 (!!!) this morning and, although G woke at 6:30 to nurse, she went back down easily and slept until 9:30. That's right, I said 9:30. When she did finally wake up, I was ready for her! No pears. Not today. Today, I was ready with a 1/2 teaspoon (yes, we increased our 'starting' amount) of pureed spinach. (I decided that, at least for this first day, we should feed her the new food exclusively and besides, we're out of pears and need to make more tonight. Oops.) She gets SO excited just being buckled into her seat. Each time, as I'm buckling and she's squealing and crazily waving her hands around with pure, unrestrained joy and anticipation of food, I feel a little sad. I would just LOVE to let her dive into something, let it cover her face, get in her hair... and she would love it too... I can't, at least not yet. Maybe someday soon.

But today, she can have spinach. Honestly, unless it's mixed in with other foods (like cheese!) or other greens, I'm not a huge fan. Am I alone in thinking it tastes a bit like dirt might taste? Anyhow, I thought feeding Genevieve spinach might be a struggle but she proved me wrong. It was only 1/2 of a teaspoon but she loved every last bit. So far, so good. No puking, no sign of anything bad. She's a smiling kid who pitched a fit when the spinach was all gone. Good girl :)

And just a word about the spinach itself. I bought a huge container of triple-washed, organic baby spinach. Huge. We steamed it, pureed it and ended up with... 11 teaspoons. Maybe I should just down spinach in this condensed form to get the nutrients too?

Later today we're heading to the allergist to start the patch testing for milk, eggs and soy. I'm excited and nervous all at once. Fingers have been crossed. Prayers have been said. Toys have been packed to keep Ellie entertained while we're there. Wish us luck.

Friday, August 13, 2010

Our First Food Trial: Pears, Day 10 (I've gone hog wild!)

So I write every day and you complain. I don't write every day and you complain. I just can't win! Okay, no one really complained but I was feeling the weight of your expectations on my shoulders. Really, I was.

So... We're on day 10 of pears. We were serious and precise about 1/4 of a teaspoon for three consecutive days. We were mostly seriously and mostly precise about 1/2 of a teaspoon for three more days. We were excited and not as precise about 1 teaspoon for two and a half days and then last night, we just went hog wild. Ginny had her 1 teaspoon of pears for breakfast and, at dinner time, when she started fussing because we were eating and she wasn't (She pitched a FIT each time we finished feeding her and it made me SO sad), I jumped up from the table, excitedly grabbed my newest purchase and went for it. I bought one of those little mesh feeders and used it to give her a chunk of frozen pear puree to chew on. I was psyched! Let her eat pears! Alas... she didn't. She didn't like the little feeder - at least not this time. She did eat the pears eventually though - defrosted and served to her on a spoon - and she was so happy. So. Very. Happy. Just to get to eat something when she demanded it. Made me happy too :)

I know it's only day ten, but I'm going to call this a pass. Hooray! Ginny has her first safe food! We have monitored every facet of her well being in a nearly obsessive, compulsive manner and have seen little that's even worth mentioning, so I think it's a safe thing to do. No rash. No diaper rash. No reflux. No gas. Best of all? I think that her sleep has actually improved. Last night she slept from 8 p.m. until 2:45 a.m. (waking once at 11:45 p.m. but easily soothed back to sleep by Dad) and then again until 6:30 this morning. A-MAZ-ING. You're waiting for it, aren't you? You want to know about her poop? Well, she's eating pears and breast milk. What do you think it looks like? (For those of you not obsessed with these things, think of it this way: pears work like prunes). As a matter of fact on Tuesday, while at a restaurant with friends, she had a poop-splosion that was a challenge for even three seasoned moms to clean up (Thanks Eleanor and Kim for gettin' my back!). But... poop-splosions happen and, since it didn't keep G from smiling, I'm not worried.

So what now? Well... I'm heading to the grocery store soon to buy pears. More and more and more pears to bake and puree and freeze and feed feed feed to my Little G. And, while I'm there, I think I'll be buying some organic spinach as well. I'm not quite sure just how I'll feed this to her (or what day we'll start that), but I'll figure that out ASAP and John and I will do a big batch of food this weekend. Having this first food as a pass has left me feeling very optimistic for a change. Can you tell? Progress, even just the smallest step, is still progress - and I'm thrilled to finally have some progress. Now I'm hoping for momentum too!

And, of course, on Monday we'll see Boy Wonder to start the patch testing for eggs, milk and soy. I'm sure you'll hear more from me after that...

Friday, August 6, 2010

Our First Food Trial: Pears, Day 3 (With a little bit-o-good news thrown in)

I told you I wouldn't write every day, and I won't. Really, there isn't much to say about the food trial at this point, but I keep thinking of other things I should tell you and I know that if I don't just do it, I just won't do it. Know what I mean? And quick, short, easy to digest posts are better than those novellas I used to write, right? Right.

So, to get it out of the way.... another 1/4 t. of pears in this morning at about 8:30 (G slept in) and all is well. I could give you all the details - at home, we're documenting every diaper and burp and fart and the slightest of redness on her skin in the greatest of detail - but I'll spare you... with one exception. We're documenting the diapers and I was quite surprised to find a special treat in there yesterday: grass. It's so tough to be outside with G because she love love LOVES to pick and attempt to eat handful after handful of grass. I forgot about this stage. I thought I had been rather successful in keeping it out of her mouth. I guess I was wrong. Does this count as a 'passed' food for our FPIES list?

Now onto the other news... Boy Wonder called us yesterday, quite out of the blue! After further research (and conversations with the doctors at CHOP, I think) he is now willing to do a patch test for eggs. Hooray! Eggs would be such a nice, versatile food to have on our safe list if all went well and we actually decided to trial it. So, all I have to do is find powdered egg (apparently, using this gives the most accurate result) and bring it along to our appointment. I can do that.

Furthermore, I thought I'd fill you all in on our long term plan for food trials. From what we can tell from our research and reading, the foods that most often show up on 'safe' lists for FPIES kids are pears, spinach and grass fed lamb so, after pears (I'm obviously feeling very positive and optimistic at this point) we'll do those. I am considering trying some form of potato before we do spinach, because E happily ate potatoes with spinach mixed in, but never spinach on it's own and, to be honest, the thought of pureed spinach doesn't really appeal to me either. So... pears, potatoes (not sweet because those are really a legume, I think), spinach and grass fed lamb. If we passed all of those, we would have a fruit, a veggie, a starch and a meat at the end of just 16 short weeks. Just so you know, I have eaten lamb in gyros and on limited other occasions, but have never made it at home so I have some research to do. It will be an adventure for sure!

I think that's it. Tomorrow Genevieve will get a 1/2 teaspoon of pears from Daddy for breakfast. I actually think he's pretty excited to get to feed her. Now I'm off to play with some dinosaurs, mermaids and space shuttles. Yes, they're all friends and they play together on Sesame Street in Ellie's world. Got a problem with that? :)

Thursday, August 5, 2010

Our First Food Trial: Pears, Day 2 (A Slight Change of Plan)

No, I'm not going to blog every day about our first food trial. We'll be trialing each food for two weeks, so that would get incredibly dull, wouldn't it? Go ahead. Nod your head. Don't feel bad. It's true.

But I am writing this morning... 7:45, another 1/4 teaspoon of pears in. I won't be increasing the amount yet. Thanks to Joy and other moms all over the FPIES internet world, we have a small change in plans. We'll feed G the same amount for 3 days and, should she tolerate it, we'll double that amount, stay there for three days, etc. Part of me just wishes I could serve up a big 'ol bowl of pears and let her dig in and part of me wishes we weren't even at the 'feeding' stage yet. Most of all, I'm just glad we haven't needed to head back to the ER!

And just so you know, I was right on with the tooth prediction. This morning we're celebrating the arrival of tooth #2 (bottom right). Hooray! Oh - and more than anything, we're celebrating a 3rd night of incredibly improved sleep.

Wednesday, August 4, 2010

Our First Food Trial: Pears, Day 1

At about 7:30 this morning, Genevieve ate about 1/4 of a teaspoon of homemade, organic pear puree. Since then she's nursed, napped, played with friends, nursed again and is now napping some more, right on schedule. She seems to be just fine. Tomorrow, we'll give her 1/2 of a teaspoon. There really isn't anything else to say. So far, so good. Don't believe me? Here's a picture of Little G after she finished her itty bitty breakfast:

Awww... isn't she just too cute? She has one tooth on her bottom left side now and is working on the second bottom one. I'm sure we'll see it any day now. Go G!

Tuesday, August 3, 2010

As I get ready to start our first food trial...

As I get ready to start our first food trial tomorrow (pears!) my head is racing. I think that when people have a manic episode, it might feel a lot like this. I can't stop thinking about FPIES FPIES FPIES. I've gone over things a million times and can't find a reason not to do this. We've done all the prep we can. As I go around and around reviewing all the FPIES info stored in my noggin I've realized that there are some things we haven't told you and, as long as I can't stop thinking FPIES FPIES FPIES I might as well type those things out for you. It's better than driving John nuts anyhow, right?

So here's what you don't know yet....
1. Although we did get an (oddly belated) FPIES diagnosis from the doctor at Comer Children's Hospital, as well as a confirmation of this diagnosis from Boy Wonder, Ginny's case has always been a bit unusual. Although first time reactions for allergies and intolerances are often not immediate (and sometimes don't even occur until a second ingestion or sting or skin contact, etc.), Ginny ate rice cereal on a Thursday and didn't vomit until a Monday night. That's kind of a long time. It has stuck with us and with doctors as something odd, and certainly makes John worry, occasionally, that Ginny still hasn't been correctly diagnosed. So... I was pouring over the FPIES chat boards last night (someday, I will devote an entire post to praising these incredible, intelligent, caring women!) and found something that feels a lot like a light bulb to me. The first time we went to the ER, John was convinced that G was puking because he had let her drink too much bath water. At the time, I called him crazy. The ER doctors assured him that this was not a possibility. Now? the time we were using Burt's Bees Baby Wash which, it turns out, is chock full-o-soybean oil. If she does react to soy and he let her drink lots of water via the wash cloth (yes, I know that is really, really, really gross), well then... that might be our missing link. Wow! Crazy, right?

Monday, August 2, 2010

The Here and Now

So let's see... last I left you we had been to the allergist and learned that Ginny is 'regular' food allergy free and I went on a little dairy binge. I'm not gonna lie to you, it was yummy. I ate dairy and eggs (in reasonable quantities, it really wasn't a binge) Monday night, and all day Tuesday, Wednesday and Thursday and, by Thursday, Ginny was a rashy, rashy mess. Why? Your guess is as good as mine. I cut dairy out again and the rash cleared up. I slowly re-introduced it again and.... nothing. Nothing at all this time. Remember, she could have no 'regular' allergy to milk, but still be intolerant to it and reacting or, not have either an allergy or intolerance but it could still trigger an FPIES reaction. Only time will tell.... But for me, for now, I'm back to eating anything and everything (and, to be honest, because I'm exclusively nursing a 9 month old, I'm eating a lot of everything). Just an aside, should you ever REALLY want to lose some weight fast, go dairy and egg free.

Can you see Ginny's rash?