Thursday, April 29, 2010

Weight gain! We are BACK, baby!

Just a little happy note! We had to go in to the doc for some unhappy times (B and I are sick, blah!) but since we were there, they measured her and weighed her. Well, I am very happy to say that all the weight she lost from her avocado reaction in February is finally back!!!!!!!!! She lost about 2 pounds and as of two days ago, she is back to the weight she was before her avocado reaction! I am SO HAPPY!!!! After her reaction, she continued to lose weight for about 3 1/2 weeks following and it was pretty obvious that she wasn't fully digesting her meals (if you know what I mean) but now she is doing great! If we can keep her free from severe reactions, she might have a growth spurt yet!!!!

Monday, April 26, 2010

New Recipe!

Ok, FPIES folks! After very little work (I am happy to say!), B and I concocted a new recipe for flatbread. You can find it in the "recipes that have passed!" section all the way at the bottom. It is egg free, dairy free, soy free, peanut and tree nut free, gluten free, rice free, but not free of flavor!!!!!!! Corn ingredients are the main staple here, though, so if you are avoiding corn, this is not a good one for you! :( HOWEVER, I am trying the same "idea" of this recipe with quinoa flour and no corn ingredients tomorrow AM, so if it goes well, I will post that too.
This bread could be used as a pastry shell, pseudo pizza crust, a bread with toppings, or simply stand alone. (That's how I served it to B!) It is super easy, so please, check it out!!!!

Sunday, April 25, 2010

Getting Bored and Hoping for a Little Creativity

So it is totally time for a new recipe. The jury is still out on whether or not quinoa is a go, but in the meantime I am going to be experimenting in the kitchen again with what we have under our belts, so to speak. Wish me luck and keep posted on the recipes under construction page for improvement to the pasta recipe and for a flatbread recipe (wouldn't it be fun to have one of those for little pseudo pizzas or "tacos" or the like? Ahh, more attempts at "normal" looking foods. . .). To bed for now, the kitchen can wait until tomorrow (and this way, the dishwasher will have cleaned my dishes by then!!!!)

Thursday, April 22, 2010

Dietitian appointment!!!!

So I found out that even though we don't have an allergist or GI available for B to see, our hospital does in fact have a dietitian. I asked B's doctor for a referral, thinking that you can never really have too much information and a fresh pair of eyes might see something differently than how we have been seeing things. 

The appointment was awesome!!!! He spent a ton of time with us and really went over everything--- some information we already knew but he did have some interesting new things to say. He recommended that for our at home food trials (we will do some hospital ones once we are back in the states!) we focus on balancing out her "food groups" as much as possible, rather than focusing on just random vitamin-packed foods (which is what we have been doing). The plan is to continue breast feeding at least until age two and try to get three foods each in the categories of grains, veggies and fruits. He recommended holding off on meats for now, especially waiting on beef as well as the typical FPIES poultry triggers. He said that based on how she is doing nutrition-wise and so long as she continues to nurse well, she doesn't really have a need for meats in her diet at this point. This made the vegetarian in me jump for joy! Now don't get me wrong-- I am pretty darn sure my B will end up being a happy little meat eater like her Daddy and I have nothing against that-- I am just worried because she has reacted to SO many things and I had such sensitivities to meats as a child, she might have issues if we start too early for her. I am still excluding squashes from my diet after we figured out that she was having minor reaction symptoms to THAT, and I still am continuing with a somewhat modified diet (this started shortly after she was born so this is nothing new. Very limited soy, limited dairy, and a few others). Since I am vegetarian and have some modifications to what my normal diet would be, he did make some recommendations for my diet-- continue with prenatals (of course!!!), start eating a fortified cereal, and continue trying to add a little more dairy in if I can (I just recently added yogurt back in). 

Another interesting thing he mentioned, was that in his reading he saw that some kiddos actually react to probiotics in things like yogurt, so other than the probiotics naturally occuring in breastmilk, he recommended steering clear of those for now. He went over the protein make-up of some of her safe and unsafe foods and that was pretty interesting. He mentioned some foods that correlated with others in protein make-up and that we might want to be a little more careful with those foods because of the similarities. One that he mentioned was olive oil-- he said that olives and avocados are very similar in their make-up and since she had such a severe reaction to avocados, we might want to be a little more cautious about introducing anything with olive oil. (We use canola anyways, so not a big deal). 

And for the brag. . . . :) He said B is doing great with her finger foods and that she is probably getting enough calories from her solids, as appropriate for her age. He said that her weight and height looked good, and she looked nutritionally "well." (She started gaining weight again at the beginning of this month! Yay!)  He said she is also communicating really well (I know it is unrelated, but still, I gotta brag!), with her signs and actual talking. He mentioned trying a spoon with her to see if she will feed herself and so this morning I did and lo and behold, she didn't do such a  bad job. She loved it!!! So we may start practicing that a little day to day. . .

He is also going to send our info along to one of the specialist dietitians at the San Diego hospital and will get back to us regarding what she says. So all in all, one awesome awesome appointment. I feel like we have a solid plan for the next few food trials (spinach is on the docket for the next one!) and I feel like we got some really useful, practical information. Hooray!!!!

Monday, April 19, 2010

Quinoa trial!!!!!

We are on day three (day two is a day of "rest") of quinoa and so far so good! We are already ahead of where we were at this point with zucchini and carrots both, so I am cautiously excited! I am preparing the quinoa like a homemade infant cereal (pulverize the quinoa in the blender until it becomes a powder, add to boiling water in a 1 to 4 ratio-- 1/4 cup quinoa with 1 cup boiling water-- and let it thicken to the desired consistency) and then mixing it with her pears, making a new food: pearnoa! Haha. Similar in strangeness to her typical main course at dinner: Banasta! Sounds like it should include jazz hands and a Broadway stagebill right? Haha. My husband came up with the name and it has stuck! Oh, and if you are wondering, Banasta is just cooked and pureed bananas mixed with (cooked!) corn pasta that went through the baby food mill (so now the pasta shells look like little spaghetti noodles!) If quinoa is a pass, there are many ways we can eat it. You can buy quinoa pasta (or make your own!) and you can make a variety of baked goods with quinoa flour (I found mine at Bob's Red Mill!) Also, quinoa is packed with protein and fiber, thereby making it truly the "mother grain," as its name means! Wish us luck!!!!

Thursday, April 15, 2010

Back from the Happiest Place on Earth!!!

B had her first Disney adventure this week! We stayed in Tokyo for three days, two nights, and I am very happy to report that she did AWESOME!!! We even tried a new version of a safe food-- pears in a fruit cup, rather than a homemade puree. She seemed to do fine with them initially, but I think they were still a little too firm for her, so she did not eat that many. However, it is good to know that we have them as an option just in case we are in a tight spot. (Although we now have enough frozen pears to last us until we move at the end of June, due to my pear puree craze the last two weeks or so, when I realized that the asian pears were going out of season and the grocery stores were going to stop selling them any day. They don't carry produce that isn't in season here. Talk about pear PANIC!!!!)

So in light of our vacay, and since it has been a topic coming up with other parents, I thought I would describe how we traveled safely, reaction and (relatively) stress free. Our trip took about 2 hours to reach Tokyo (via train, several transfers and a little bit of walking). I love our public transportation-- it is truly fabulous here, even with the language barrier. We ride the train a lot (3 or more times a week typically) so nothing new there--- I always bring a sippy of water and a little bento box with Kix and B's cookies, and now Corn Chex too. Since I breast feed, I also bring along all of those supplies (haha). The sling is great for riding the train, since not all of the stations have elevators and some don't even have escalators. Also, B has a love hate relationship with the stroller, so it helps to have options. We occupy her on the train mostly with books and other quiet toys, since trains here are relatively quiet. Japanese "grandmas" tend to like my daughter as well, so every now and then one will come along and "talk" with B and occupy some time.
Our hotel was awesome--- Grand Pacific Le Daiba Tokyo--- and it was right on the water with an amazing city view of the Rainbow Bridge, Tokyo Tower, and more! Service was excellent and the room was decent sized-- there was plenty of room for the pack and play as well as a nice play space. Important things for the hotel with an FPIES kid: For us, it was fairly easy since we don't have to heat anything up. We just needed a place with a fridge for storing her fruit. Everything else she eats (cookies, chex, muffins and kix) I just brought prepacked in small plastic containers and ziploc bags. I am quite confident however, that if we would have needed to heat something, we could have used one of the hotel's microwaves somewhere though I don't know how convenient if would be. . . Anyways, had we needed a way to heat something, we would have looked for a hotel with a microwave or partial kitchen. Marriot residence inns stateside are usually fairly reasonable. I also packed everything in a tote bag insulated to keep foods frozen--- after being in the bag for 3+ hours, the pear cubes had only started to soften. Yay! I also packed the fruit cups (just pears) as back up, mostly for Disney. We also got a hotel near to some grocery stores, which I would also recommend, if you don't want to pack all of your food.

We did not experience any trouble packing our food for any of the restaurants (of course) although we did not get to try and see if they could prepare something for B there. (I really wanted to try this at Disney but the day got away from us!) Disney was a great day! It was about a 30 minute train ride and again, we brought all of the food we needed-- no trouble bringing it into the park. I did, however, bring her medical letter about FPIES in case we were questioned. For next time though, if we go to a similar place before leaving Japan, I will make sure I visit the translator before going so I can have all of the info in Japanese as well. So my recommendations if you are visiting or living somewhere where you DON'T speak the primary language, don't assume, just bring a translated letter with you. I also have a document that has a few simple Japanese phrases on it that state in Kanji and romanji that my daughter has FPIES and is extremely allergic to rice, sweet potatoes, avocados, peaches, apples, blueberries, carrots and zucchini (I include even the foods that produce smalled FPIES rxns just on the safe side.) That way, if there is a question at a restaurant or otherwise (if we had to go to the Japanese hospital, heaven forbid) we would at least have a few helpful phrases. I would also recommend this if you are visiting or living somewhere where you don't speak the country's primary language.

Anyways, B actually go to ride some rides (small world, the tea cups and the merry go round)!!! She loved them and actually cried when we had to leave the tea cups and the "horsies!!!!" No motion sickness here! Another compliment about Tokyo Disney-- their services for babies and young children are awesome!!! They had these Baby Centers throughout the park that each had a series of rooms within the center. There was a nursing lounge, with private areas (I counted 20!!!!) with a comfy armchair, table for a drink or your bag and a curtained door for privacy. There was an attendant at the door to make sure that it was ladies and babies only and that it stayed very quiet. Another room was for changes and there were several changing tables, large wash sinks and another very friendly attendant. When you change the diaper, the attendant actually throws it away FOR you!!!! Everything was meticulously clean and so kid friendly! The third room was like a large kitchen and it had multiple tables and chairs and highchairs for feeding your LO. Again, there was an attendant present to help with whatever. The whole area was back far enough from the surrounding attractions so that it was super quiet and calm, just the sounds of lullabies piped in! LOVED the baby centers!!! There was also a great toddler park that was partially fenced in and had a soft patterned ground (some kind of rubber ground maybe?) and several soft brightly colored animals and shapes for climbing on. B had a blast climbing on the animals and going through little tunnels in the shapes. She definitely was practicing her walking (and getting pretty speedy at some times she was so excited!) and really enjoyed climbing. It was yet another thing we had to drag her from in the end! She was so tired, she passed out right afterwards, when we were on the Small World ride!

Everything (rides included) was so clean and safe for a LO and we would definitely go back if we could. I have also heard that Disney is a great place for making accommodations for FA kids, so I am sure we will visit again in the future, if not in Tokyo, then somewhere else.

So in summation, if travelling with an FPIES kid or any kid, do your research in advance, bring your tools (premade food or food processor and cooking equipment), research research research your hotel, and don't be afraid to test a few limits with your LO (outside of food, of course). I never thought my B would do so well with such a crazy schedule and so many changes from her norm, but she LOVED the experience. Yes, we had our meltdowns, but overall, it was completely worthwhile to see her having so much fun exploring the world around her, whether on the train, at Disney, or just bopping around Japan on her Daddy's shoulders or in Mama's sling.

Sunday, April 11, 2010

Grrrr, Zucchini

Within 24 hours of ending out carrot trial, all returned to normal, even though we were cutting two new teeth! no reflux symptoms, no strange diapers, etc. Well, the teeth having poked through, our zucchini trial began yesterday. At this point on day two, I am unsure if we will continue. We are only giving B 1/4 oz and only at her AM feeding, around 7 or 8am. This amounts to slightly less than about two small baby spoonfuls, so a pretty tiny amount. Day 1 had a nasty mucousy, greenish black, very loose stool (sorry if TMI but if you are an FPIES parent, you understand!!!) almost exactly 6 hours after the feeding and today we had two more like this, slightly more acidic, exactly 2 and 4 hours following ingestion, respectively. Also, lots of "shriek-y" screaming that subsided once the second diaper passed. Still want to ask DH what he thinks--- won't be home again until tomorrow night--- but at this point, it doesn't look good for our future with zucchini. I might try again tomorrow AM, but really, I don't want to put B through more than she has to go through. Her severe reactions are typically delayed (do not occur with first ingestion-- take between 10 and 15 days worth of ingestion to cause the crazy vomiting/ lethargy/ etc) so if I see any potential signs of a reaction brewing, I watch very closely and if I see a pattern of worsening symptoms, I simply pull the food. I am so disappointed in this though. I really thought B would be one of those kids that would start passing more foods once she hit that one year mark. We still have only 4 safe foods (pears, bananas, corn flour/meal, and arrowroot starch) and if zucchini is a fail, we will have failed seven foods. Next on the list, maybe quinoa. . .

Friday, April 9, 2010

Mulling Masa

So I have been asked a lot lately about us using Masa, how it works out and where to get it. To start, Masa is a type of corn flour made with corn treated with lime water and then specially ground (B has failed many foods and has no problem with the lime element. You can't taste it so I think it must not be very much at all. It is not actually added to the product, simply the product is treated in it). It is powdery like "normal" flour but denser, and it is a yellowish color. Quaker makes the stuff we buy and it can be found in the baking aisle at your grocery store, sometimes labeled "Masa-- Corn Tortilla mix." You can substitute out Masa for regular flour cup for cup (1c masa = 1 c all-purpose or wheat flour). The taste will be slightly different and it won't rise the same, since it is gluten free. It is commonly used in making tortillas and some tamales. If you can't find it at the regular grocery, check out any Hispanic grocers. They will most likely have it there. Simply ask for Masa. You can use it in place of corn meal in many recipes and it will create a nicer texture and be less gritty (B had troubles with corn meal so we stick to Masa).

Wednesday, April 7, 2010

Et tu, veggies? The Sequel!

So we are on day two of no carrots, and lo and behold, no nasty hiccup episodes (as to the 4-5 episodes that were occurring daily when we were giving her the carrots) and diapers have resumed their normal state (though they weren't super abnormal this time). Because of this, my husband and I are abandoning our orange friends (or anti-friend in this case). I still have a tiny shred of uncertainty that maybe she is just still adjusting to the carrots but I think it is simply because I really really REALLY wanted to break our food fail cycle and start passing something. :( But again, this is the second time we have tried carrots (Gerber first time, homemade was this time) and she was exhibiting virtually the same symptoms that she did leading up to her severe reactions to sweet potatoes and avocados. And 7 days of worsening symptoms is enough for me! Our goal is to have no more ER visits, at least until we are back in the states!!!!! B is taking a break from anything new until Sunday or Monday, when we are going to start zucchini. Hopefully, zucchini will be kinder. The lime colored zucchini cubes in my freezer really look so pretty. . . . I hope they are nice to eat as much as they are nice to look at!!!
And on the upside, we have been exploring Japan some more, since my parents have been here on a visit. We re-visited the Great Buddha (Daibutsu), which I hadn't visited since late in my pregnancy, and checked out some more sites in Kamakura. B discovered that gravel makes a lovely sound when you scuff your feet in it, so that was the most impressive part of her day! Enjoy the pictures and wish us zucchini luck!

Monday, April 5, 2010

Et tu, veggies?

Well, on the up side, B is now sporting two lovely little teeth (top front two, just in time for Easter. My little bunny!!!) and adores her corn Chex! NO TEXTURE ISSUES!!! SO happy about this! (She tends to have texture issues with new foods and has trouble with food hoarding and whatnot). Also, we got our order of corn pasta from Sam's Mill brand little sea shell pasta. Only ingredients are corn flour and water. We love you, Sam's Mill!!!!

And on the not-so-up-side. For the last almost week, due to our lack of success with fruits as of late, we have been brave and have been re-trialling carrots (we tried them somewhat unsuccessfully when she was about 7 months BUT there were a lot of factors making us wonder if the problems she had were related to other issues, such as reacting to sweet potatoes, her system not being ready for carrots overall, and the fact that they were Gerber brand, what with all of the potential for cross contamination. . . enough said!). I made them homemade, fresh from the Japanese farmer's market (and those things are BIG!!!!! Check out my pics!!!) and we have been giving her about 1/4-1/2 oz daily for the last 6 or so days. No super crazy diapers, though a few recent ones have been getting a little greener in color, but nothing really out of the ordinary. She has been having a harder time resting at night--- a few nights of crying for 2 hours or more for no apparent reason--- but again, nothing markedly significant. However, there have been hiccups. I know, I know-- seems like nothing to most, but we are starting to get nervous because with B's severe reactions (which are usually delayed), hiccups always lead up to the big reaction. She also does not get hiccups (other than one episode here or there) like this normally--- several episodes a day, they seem to cause her discomfort, kind of "wet" sounding. Once she outgrew the worst of her reflux 5 or so months ago, hiccups only resurface when it is reaction time. So we are debating right now if we should stop the carrots due to hiccups or if we should stop, wait a little bit, then start again, etc etc etc. I really hate this. In one way, I want to see if we can make it work-- a part of me is hoping that maybe it is teething? or maybe she is just getting used to carrots and not having the start of a reaction? It is so subtle but it still seems like it could be a pattern, so I am not sure really what to do. Any ideas?