All the Pretty People

All day today, Jane Dark's description of me was echoing like music through my mind: "Stunningly beautiful . . . very pre-Rafaelite, but in silvery colors."

It was a bit humbling, but it also really made my day. Even though I don't think it's quite accurate. :)

I've never thought myself particularly pretty, perhaps partially because (and I'm not kidding here) I always look like an unfamiliar stranger to myself in the mirror or in photographs.

But, realistically, I have quite an ordinary face. Even my husband, who loves me dearly and thinks I am pretty, would never use a phrase like "stunningly beautiful" to describe me. I'm just not.

I expect that Jane Dark saw something in my expression or my eyes that she connected with, and that's what gave her that impression.

I used to feel slightly guilty because all the people I'm close to are beautiful.

"What does it say about me," I wondered, "that I only like beautiful people? I must be very shallow to have only pretty people as friends."

Then I realized it's not that I like only pretty people. It's that, to me, the people I like are beautiful.

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When I think of it that way, I see the scene at the end of Mr. Holland's Opus, where Mr. Holland sings, "Beautiful, beautiful boy" to his son. That's how I feel about the people I love.

Maybe it's partly because of my face blindness, but the things I notice and like about people aren't things like regularity of features or classical beauty. They're things like their expression, the light in their eyes, the way they move, or the character that shows in their face.

I couldn't describe anyone's features to you accurately, but I could tell you what I love about them and the way it shows in the way they look or talk or carry themselves.

With my husband, for example, I especially love his eyes. They're so open and transparent; so deep and full of thought; so much a window into his soul. In his eyes I can see both his strength and his great tenderness; his gentleness and his intensity. I love his mouth, too, and the way it mirrors his feelings. His whole face is expressive, and that's one of the things I find most attractive about him. To me, he is very handsome. His features are beautiful to me, but it's really his depth and quality that makes him the most handsome man in the world.

In thinking about it, I think that transparency is probably one of the things I find most attractive about people. I don't tend to feel deeply connected to people I feel are putting on a front or wearing a mask. I like people whose personalities shine through in their face and eyes.

That doesn't mean everything about them is sunshine and roses, or even that they're always happy. I like people who are real, even when it means I can see a hint of sadness or loneliness in their eyes. I like people who aren't afraid to let that show. But I also like people that I can see are kind, gentle, caring, have a special inner strength, or value the things that are truly important.

I like people who are real, and have beautiful souls.

Most of my friends and family probably aren't exceptionally beautiful in the eyes of society. But to me they are.

All the people in my world are pretty people.

who knows if the moon's
a balloon,coming out of a keen city
in the sky--filled with pretty people?
(and if you and i should

get into it,if they
should take me and take you into their balloon,
why then
we'd go up higher with all the pretty people

than houses and steeples and clouds:
go sailing
away and away sailing into a keen
city which nobody's ever visited,where

always
it's
Spring)and everyone's
in love and flowers pick themselves

e.e. cummings

(Eleventy-One Things About Me, #39: The people I like are beautiful to me.)

Vacationing with the 5-and-under club

We're having a fabulous time. Vancouver, B.C. is really beautiful. The girls are still thrilled with the hotel room, as well as everything else we see.

Somehow I really feel as if, for these few days, I've left much of my stress and worry behind.

Yes, I still have to be aware of Baby E's allergies. Figuring out what we're going to eat is a challenge. But I'm beginning to get used to those things.

We're having a wonderful time just being together as a family, with nothing in particular we actually have to do. We enjoy each other's company a lot.

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Best of all, we found a Whole Foods not too far from our hotel. They seem to have more things we can eat than any one store we've tried yet. The selection of everything from fresh fruits and vegetables to corn- and soy-free crackers is amazing.

They had pomegranates much cheaper than I've seen them in the USA, so I bought one. I even found a few things we could eat in the salad bar and deli.

Right now DH is out having pizza with the older girls while Baby E and I are relaxing in the room. I was going to heat up some soup in the rice cooker we brought. But then I realized that neither DH or I remembered to bring anything remotely resembling a bowl or a spoon.

So Baby E and I shared half a pomegranate and ate some crackers and Amaranth Snaps cereal. We shared some pomegranate seeds with the others before they left, too. It brought back great memories--pomegranates were a rare special treat when I was growing up. It was fun to pass on the memories to my girls.

We visited Stanley Park today. Much of it wasn't open on a Monday afternoon in the fall, but there was still plenty to do and see. We played in the hollow tree, fed yeast-free kamut bread to the ducks and squirrels, saw the seals, sea lion and beluga whales, and played on the playground.

We were walking past the aquarium just as the trainers arrived at the seal and sea lion pen. We had a great view of the seals and sea lion eating dinner and performing their tricks.

Then the beluga whales kept coming to look at us and standing on their heads and tails in the water. They were beautiful. I'd never seen one of the graceful white whales before.

The ducks were Baby E's favorite thing. She loves birds of all kinds, and especially ducks. Her favorite book right now is "Quackety Quack Quack," a book about a baby feeding bread to ducks. The forced rhyme and the almost-but-not-quite-regular rhythm are annoying, but Baby E loves it. Every book is "Quackety Quack Quack" to her right now. When she sits down to look at a book, the thing she says more often than not as she turns the pages is "Acky-Ack-Ack".

The ducks all clustered around us at Stanley Park, trying to take the bread right out of our hands. Baby E sat right down in the midst of them and cooed. We stayed for a long time, watching the drakes try to chase the ducks away from the bread and race to get the crumbs. We even saw a jet-black squirrel that came down to try to steal a piece.

As we left Stanley park and all the way back to the hotel, Baby E couldn't stop talking about the ducks. She kept saying, "Du! Ack! Du! Ack, ack!" over and over.

AJ and M&M both said their favorite thing was the playground. Kids this age are so easy to please.

My only regret about the day was that we forgot to bring the camera along.

The Dilemma

We woke up this morning to find that the little refrigerator we bought for the trip and filled with food had turned off. It was just slightly cooler than room temperature.

Apparently when we turned off the overhead lights it also turned off the power to the outlet we had the cooler plugged into.

The muffins and bread we had in it are still good. But what of the chicken vegetable soup I made for the trip, and the eleven cooked chicken thighs we so carefully packed away? I don't know whether they'll still be good or not, and I'm a little afraid to try them.

Oh, dear.

Blogger Commenting Bug

It appears that Blogger and the Blogger Beta have developed a bug in the way they interface. Anyone who has upgraded to Blogger Beta isn't able to log in and leave a comment on a non-upgraded blog.

So, here's what to do: Don't try to log in with your Blogger/Google account. Instead, when you go to leave a comment, click on "other". That will allow you to type in your username and a website or blog address if desired (or you can leave both fields blank).

If that doesn't work, just use the Anonymous selection to comment. Please do sign it with your username so I know who you are! You can even use HTML to make your username link to your blog if you'd like.

Meeting Jane Dark

Well, we're here. The trip went amazingly well. There was hardly any traffic, and even though we got a late start we made it here before the kids' bedtime.

Baby E cried very little in the car, and the older girls did fabulously. They read to themselves for most of the trip, happily discussing their books and eating snacks.

Baby E was thrilled that I was sitting next to her. She kept pointing out things in the scenery that she wanted me to see, which was very cute. All three girls got very excited every time we went through a tunnel.

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Baby E was a little more tired and clingy than normal this morning, but by halfway through the afternoon she was almost back to her normal self. After she took her second nap in the car, she woke up positively happy and energetic.

Actually, she acted pretty normal for the most part all day. It will be nice when I can stop overanalyzing her every mood and expression, worrying about when her next bad spell will happen. I didn't used to be such a paranoid, uptight mother.

The highlight of the trip up was that we got to meet Jane Dark. It was far too short, but it was really fun to see her in person. It was my first real blogger meet-up.

She didn't look at all the way I had pictured her. I somehow expected a blogger with the pseudonym Jane Dark to be . . . well, you know . . . dark. I pictured her as tall, dark-haired and somewhat imposing. In reality she was much tinier, fairer and younger than I'd imagined her--and I didn't find her intimidating at all.

I liked her very much. Even though we only had a few minutes, I found her gracious, friendly and enjoyable to talk to. She seems like a person I'd enjoy hanging out with--someone we'd want to invite to visit our home if we lived close enough, or that I'd go to a fun event with.

I'm not sure if she felt the same way about us. We talked very unintelligently about British literature (even though DH and I both love reading and discussing books of all kinds), our kids, and not much else. The kids were so excited about the labyrinth in the little garden at her church that they barely said a word to her.

It was very short and felt rushed and a bit disjointed. We had to get back on the road pretty quickly. But as we left I found myself smiling at the way Jane Dark's eyes lit up when she mentioned that she enjoyed attending operas, concerts and plays. Since I love all those things, too, it made me feel somehow connected to her.

After we got back on the freeway, DH musingly said, "I wonder if she ever gets down to [town somewhat south of Jane Dark's home city where BIL and SIL live and we visit frequently]. BIL and SIL would like her, too."

It would sure be fun to have her down for a game of Settlers of Catan when we're visiting there sometime.

The kids were ecstatic when we arrived at the hotel. They ran around squealing and exclaiming at everything in the room. AJ kept saying, "This place is wonderful" and M&M couldn't get over the fact that she and AJ were going to get to share "a BIG bed!"

We just finished listening to AJ read us all a story about cats, and now DH is reading a chapter from Bedtime Bible Stories to the kids . . . it goes through most of the stories in the Bible, in laguage written for kids. I'm not sure Absolom is the best going-to-bed material, but at least it's written for kids and skips some of the most graphic parts.

Not the Pears

Baby E seems to be doing just fine after eating pears, so that must not have been what she's been reacting to.

She still has a runny nose 1 1/2 weeks later that just doesn't seem to get better, so I'm wondering if that's somehow allergy-related. She sure had a stuffy nose all the time until we cut out soy.

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If she's still doing this well by tomorrow, we'll probably go ahead to B.C. I think it will be fun. We bought a little mini refrigerator that will plug into our car or a regular outlet, and I'm baking muffins and making soup to take along.

Hugs From Grandpa

My dad stopped by today, and the girls were so excited to see him. Baby E wanted to go to him right away and gave him a huge hug. Then she turned and waved at me as if to say, "Bye-bye, Mommy! I'm going home with Grandpa."

She's still feeling much better today. She's taking a nap right now, and then we'll try giving her some pear to see what happens.

Cute Kids

I was sitting at the computer while feeding Baby E this evening. AJ came up behind me and looked over my shoulder as I typed suggestions for a healthy cake recipe in reply to a query on Ask Moxie.

M&M called from the hall, "What are you doing, AJ?"

"Seeing what Mom is doing," AJ answered, silently reading what I'd typed. "She's the one who helps people. She always helps people when they need help. You help a lot of people, don't you, Mommy?"

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M&M is working so hard on saying her R's correctly.

One day she was talking to AJ and I heard her say "ran" with a real R. I said, "M&M! You just said your R right! Did you know that? You said "ran" instead of "wan". Good for you!"

She got really excited, and ever since she's been very conscious of her R's. First for several weeks she would say "rrrr-wan" and "rrr-wight." Now it often sounds more like a "zh" sound, but more and more often she is actually ending up with a real "rr" sound. Most of all, I'm just proud that she's been working at it so hard and so consistently all on her own initiative.

Both girls are doing amazingly well with their reading, too. Both can pick up random children's books and read most of the words. M&M was reading a book about hugs today and started giggling when she read, "How about a wiggly hug?" AJ picks up everything and reads it, not even hesitating at words like diarrhea and athsma on flyers at various doctor's offices.

Baby E loves books too. Having anyone read to her is her favorite activity. Tonight she wanted me to read her a book about animal sounds, and she chuckled and made all the sounds along with me, pointing at the animals. She made me read the book twice, then she picked it up and went to find Daddy so he could read it to her again.

She seems to be doing fine with rice, so I made up a yummy pumpkin muffin recipe with rice flour tonight.

I'll try giving her some pear tomorrow.

Testing Rice

Baby E seems to be feeling better today. Her smile reaches her eyes for the first time in several days. Yesterday she would smile, but they were mostly very small smiles and her eyes still looked sad.

She had no rice yesterday. I need to know if that's the difference, so I'm giving her some rice right now. We'll see what happens.

If there's something going on that's more than food-related, I hope we'll figure it out soon.

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I did give her some of the specially-compounded allergen-free Tylenol yesterday, and she was fine with it. It did seem to help a bit. Maybe her milder fussiness yesterday was related to teething.

Yesterday afternoon my dad took the older girls to see a movie about dolphins, and then out to eat. They had such a fabulous time. The girls really love being with Grandpa.

While they were gone I was able to take Baby E to get her blood draw for the celiac panel.

We also went to the butcher shop to get some meat. With Baby E's apparent tendencies to develop new allergies if she eats a food too often, I thought some variety in the meat we were eating was a good idea. I got a whole free-range organic chicken, figuring even a whole chicken was more variety than nothing but frozen chicken thighs all the time. I'll cook it up and make a broth with the bones, to hopefully get a little more calcium into us.

Then I bought some ground veal and buffalo, and some uncured additive-free bacon. I wanted to get some venison, but apparently you have to order that in advance and buy an entire case of it.

I must admit that I've hardly eaten anything the last few days. With Baby E developing new allergies and not being sure what she was reacting to, I was afraid to eat anything for fear it would get into my milk and make her sick. I'm down to 102 lbs. and starting to look gaunt even to myself, so I really can't keep doing that.

Last night I decided that I'm going to have to go ahead and try eating gluten for now. If it seems to affect her badly I'll cut it out again, but she's getting it in her diet anyway and at the moment that doesn't seem to be what's causing the acute episodes.

I made a delicious stir-fry with the ground veal, some garlic and leeks, carrots, celery, zucchini and kale. It tasted so wonderful. I ate so much of it I gave myself a stomachache.

Baby E ate some of the stir-fry, too, but once a peach appeared as a possibility that was all she wanted. Peaches and grapes are her current favorite foods.

Sigh of Relief

Baby E is sitting in her high chair right now, happily eating spelt bread and carrots. She keeps "driving" a piece of carrot around the tray and making "Brrrm, brrrm" noises as if it were a toy car.

She seems to be feeling much better today. She slept from about 1 a.m. until morning last night. Although she's still short-fused, tired and a bit fussy today, she is happy and interactive most of the time. She seems much closer to her normal self.

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Interestingly enough, she loves this yeast-free spelt bread. She's been eating it happily for 2 days now, and her bad spells don't seem to coincide with eating it.

Seriously, I'm starting to suspect that Baby E has developed a rice allergy.

Corn, rice and oats are all in the grass family, and rice allergies are supposedly more common in people allergic to corn and/or oats. I just found that out in the last few days. Since Baby E is allergic to both corn and oats, it probably wouldn't be unlikely for her to develop a rice allergy--especially when eating it constantly.

I asked the allergist to test for rice allergy on Tuesday, but she refused even after I told her about the corn/rice/grass thing.

"I've never had a patient allergic to rice in 30 years. Not one. So I just took it off the panel. I don't even test for it any more. Nobody's allergic to rice."

Why did I just say, "Oh, okay" at that point, even though I knew that wasn't true? Grrr.

I'm going to take her off rice for a few days and see what happens. As soon as the other allergist is back from paternity leave, I think we'll be going back to him.

I did make an appointment with a pediatrician today. The fabulous Dr. B is out of the office this week, so we saw another doctor.

I wore my grey skirt suit and a red turtleneck, and even put on a necklace and lipstick. I thought if I looked professional and put-together, maybe the doctor would be more prone to take me seriously. It made me feel a little more calm and assertive, anyway.

It turned out I didn't need to worry. The doctor turned out to be a lady we'd seen before and liked. She has a 2-year-old and is expecting her second child this winter.

She was very concerned and sympathetic, and took Baby E's problems seriously. She checked Baby E over to rule out ear infections, etc. The doctor said that she thought Baby E needed to see a GI specialist. However, she agreed with me that we should NOT let the doctor we saw yesterday perform any kind of procedure on her.

So, she is referring us to another specialist at the best clinic/research facility/teaching hospital in the area. I'm glad. That facility is where my mom goes for nephrology, and she really likes the doctors there. They do a great job. It's also where my friend from college, the pediatric endocrinologist, is going to be working when she finishes her current residency. It's a very good clinic.

The doctor also said that Baby E had quite a bit of swelling where her molars were coming in, and that pain may be contributing to her discomfort. So she wrote a prescription to have ibuprofen compounded. She wrote on the prescription, "Patient has severe corn allergy. Medicine must be compounded corn-free."

She also wrote a note to our regular pediatrician saying we need a note saying Baby E can't have anything containing any corn, soy or her other allergens.

The clinic we go to recently hired a compounding pharmacist, and I was able to talk to her directly. She's going to make the medicine with nothing but ibuprofen in capsules derived from trees, not corn or soy. We can just open the capsules and mix the powder with food to give Baby E.

Baby E was falling asleep in her high chair next to me, so I laid her down in her crib. She's sleeping peacefully now.

I'm so encouraged.

Now I'm going to go and do some schoolwork with the older girls. They were fabulous during the appointment. I talked to them beforehand and let them know how important it was that I be able to hear and talk to the doctor without them interrumping. They understood, and were for the most part very quiet while the doctor was in the room.

I'm going to use this time while Baby E is sleeping to spend some focused time with them. Housework can wait.

Mama Bear Going to Battle

I found a copy of the package insert for the 5% dextrose lactated ringer solution used in IVs. It's on the FDA website--incidentally, a great resource for finding things like that.

It reads, in part:

Baxter Lactated Ringer’s and 5% Dextrose Injection, USP
in VIAFLEX Plastic Container

CONTRAINDICATIONS
Solutions containing dextrose may be contraindicated in patients with known allergy to corn or corn product.

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ADVERSE REACTIONS
Allergic reactions or anaphylactoid symptoms such as localized or generalized urticaria and pruritus; periorbital, facial, and/or laryngeal edema, coughing, sneezing, and/or difficulty with breathing have been reported during administration of Lactated Ringer’s and 5% Dextrose Injection, USP. The reporting frequency of these signs and symptoms is higher in women during pregnancy.

Reactions which may occur because of the solution or the technique of administration include febrile response, infection at the site of injection, venous thrombosis or phlebitis extending from the site of injection, extravasation, and hypervolemia.

If an adverse reaction does occur, discontinue the infusion, evaluate the patient, institute appropriate therapeutic countermeasures, and save the remainder of the fluid for examination if deemed necessary.

I also found out that there is an alternative readily available. Plain saline solution without the dextrose can be substituted, and should be available anywhere.

I'm starting a binder right now with a copy of the package insert, relevant parts circled in red. I'll add other relevant information and a statement from Baby E's pediatrician. I think he'll be happy to give us something saying that she has severe allergies, including corn and soy, and needs to completely avoid anything containing these ingredients.

That way I can keep that binder with me or in a readily accessible place, available at all times. I don't want to end up in the emergency room some day arguing with some lunkhead about why Baby E can't have an IV with dextrose in it.

I'm thinking I should probably get some kind of medical alert bracelet or something for Baby E to wear, too, since an IV would be one of the first things placed in a real emergency.

There's no way I'm going to let a doctor mainline corn into my highly allergic baby's system. Not this mama.

Change of Plans

Baby E seemed to be feeling pretty good this afternoon, even after eating more gluten. But tonight she's absolutely miserable again--and all she was willing to eat at dinner was rice, chicken and carrot (she tested negative for carrot allergy, and I've discovered she likes them from my grandma's garden, shredded raw.

She is just squirming and flailing around crying in my arms. I don't know what to do . . . walking with her or trying to distract her doesn't seem to help.

. . . Ah, she finally calmed down enough to nurse. Poor thing.

When I told the GI doctor that Baby E has a lot of stomach pain, he said, "How can you tell? What makes you think her stomach hurts?" The tone he said it in sounded like he didn't believe I could possibly know whether her stomach hurt or not, since she doesn't talk much.

Believe me, I can tell. Besides the fact that she grabs my hand and tries to get me to rub her tummy, I can just tell by the way she writhes around, crying, curling up and then arching her body backwards. She'll whine, "Aaaai! Aaai! Aaaai! Ow! Aaai!" over and over. I wish I knew how to soothe her.

Now she's crying and writhing again.

OK, a couple of hours later . . .

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I paced the floor and cried with her until she wore herself out. Then she suddenly wanted some of the food she had been adamantly refusing until moments before.

She was alternately happy and hysterical every few minutes for quite some time after that. When she went into another long crying rant a bath finally soothed her--until 5 minutes after getting out.

Now she's getting sleepy again, and nursing. I expect she'll end up in our bed again tonight . . . she at least sleeps a little between crying episodes that way. Last night she and I slept from 4 a.m. until about 7:45.

Screaming again . . . carrying her downstairs worked this time. She got interested in the TV show DH is watching. I'm ending up letting her watch Winnie the Pooh or Blue's Clues a lot lately. Sometimes it's the only thing that soothes her.

She requires my full attention almost 24/7. I just can't see putting her down and letting her scream in pain by herself any more than I absolutely have to. But I'm having a really hard time balancing the other kids' needs and everything else with her needs. Baby E's discomfort is getting worse by the day. Today was much worse than yesterday, which was worse than the day before. I dread tomorrow.

The more I think about it, the more I realize why I came out of the GI specialist's office feeling so "ugh". The appointment was not a positive experience. I felt that I didn't communicate well or explain myself well at all.

Yes, I know that the symptoms Baby E is experiencing now are almost exactly the same as her allergy symptoms. I understand that to an outsider it may seem like I'm imagining things. But I really do think there's something besides allergies going on here--or at least other than her known allergies.

An example of one of the many "ugh" moments in the appointment: He said something like, "But she seems fine . . . she's gaining weight normally and growing and everything, right?"

I said, "No. She weighed 20 lbs from 6 months to a year of age. She was I think 23 lbs. at her last check-up and now according to your scale she's 21 lbs."

He said in the tone one might use with a recalcitrant child, "Now, see, this is the kind of thing I need to know. That's important. You need to tell me that sort of thing. Nobody told me that; there's not very much information here in her chart."

I had written that down, along with about 20 other symptoms she has been having, on the intake form he held in his hand.

Another time he was asking me about family history and I told him that my niece has celiac. He asked several questions about how our niece was diagnosed, etc. and then said, "So how's her general health now?" I told him that she's having more trouble with her nephrotic kidney disease now than with the celiac itself and he suddenly became very alert and interested, and started asking me for all kinds of details about the kidney disease.

I mentioned (again) to him that my mom has a strongly hereditary kidney disease too, and he asked me who her nephrologist was. I told him that I didn't know the name; someone at [nearby excellent teaching/research hospital].

It was right about then that he got frustrated again and I realized he was talking about Baby E, not my niece or my mom. I don't know how long ago the "she" in his questions had changed, or how many times.

"You're confusing me!" he said, furiously scribbling out all the copious notes he'd just taken. "I was talking about HER!" gesturing toward Baby E.

I apologized profusely, wondering how I'd gotten so confused. It was only just now that I realized it wasn't all just me. It might have helped a bit if he'd used Baby E's name a few times instead of just referring to her as "her" and "she" the whole time. Not that I blame him; I'm bad enough with names myself. But at least it's good to know that the poor communication wasn't solely on my end.

We were supposed to take a family vacation to Vancouver, BC this coming week, leaving on Saturday. The arrangements are all made, accommodations paid for. We've been planning this trip for a long time.

I told DH tonight that I can't see taking Baby E on a long trip like that when she's so miserable. Especially since she's not handling even short car trips well at this point.

Plus, it would delay our getting a diagnosis and helping her feel better. I'm certainly not willing to make her suffer like this for an extra week for a trip she's not going to enjoy anyway. We could get the endoscopy this coming Tuesday instead of a week from Tuesday if it weren't for the trip.

So I suggested that DH take the older girls on the trip while I stay at home with Baby E. He said that if Baby E and I don't go, he doesn't want to go either. So we may end up canceling the trip or just taking a brief overnight visit to BIL/SIL's house just a few hours away instead if Baby E seems up to it later.

Tomorrow I'm going to try to get in to see our regular pediatrician. I'm going to print out the PubMed article and a number of posts from the corn allergy forum saying that people who are allergic to corn often have bad reactions to dextrose IV solution. He's very good about considering such information seriously.

I trust him quite a lot. Even the allergist recognized his name and immediately said, "Oh, Dr. B. He's wonderful!" That seems to be everyone's opinion of him.

I think I'll feel better if I can just talk some of this through with him and have him see how miserable Baby E is compared to last time she was in to see him.

I am going to ask him for a referral to a different pediatric gastroenterologist, too.

Visiting the GI Dr.

Well, we saw the gastroenterologist.

Baby E was feeling really badly this morning--and this even after having no banana since yesterday morning. Last night was pretty rough. When she woke up this morning she was so very tired, and she screamed and screamed. She's been fussing and tired so much this week. She refused to eat more than a bite or two of breakfast, and cried in the car until she finally fell asleep again.

When we got to the doctor's office, we had to wait quite a while. Baby E just sat on the floor the whole time, not moving, just staring. When the nurse took us back to the room and got her weight and temperature, Baby E just sat or laid in whatever position we put her. The same when the doctor examined her. She barely responded to him.

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The nurse and the doctor both kept commenting about what a good baby she was. I wanted to cry. I tried to explain that this kind of behavior is not normal for her; that she's normally very active and social. Everyone keeps telling me she looks fine. But she's so not fine.

Her weight was down to just over 21 lbs. She weighed 20 lbs. from the time she was 6 months to a year, but had been about 23 lbs. at her last checkup a month or so ago. So she really has lost weight.

This week I've been feeling like I want to stand on a rooftop and scream, "Somebody please listen to me! Something is wrong with my baby. Please make her better. Please, please . . . can't somebody help my baby?"

That's pretty much what I said to the GI doctor, actually. Except for the "please listen to me" part. I wanted to say that, though. I did tear up a couple of times when I was talking to him. I feel like I just can't get anyone to really understand how sick she is.

He made me feel a bit like a hypochondriac crazy overbearing mother, but he does think Baby E could definitely have celiac disease. He said that a lot of her symptoms could certainly point that way, and that about 1 in 100 or 150 people have celiac disease even if they're symptom-free. So he wants to do the endoscopy and blood test.

Or it could be just (just!) the allergies. Either way an endoscopy would give us useful information, he said. We're just going to do the blood draw for the blood test at the same time as the endoscopy, since they'll be putting her under sedation and opening up an IV site anyway.

He also said he'll be putting her on a dextrose IV for the procedure. Dextrose as in corn-derived sugar. I tried to ask him about possible alternatives, telling him I was concerned because Baby E is extremely sensitive to corn. He totally brushed me off. Actually got irritated with me.

"There's no protein in it, so nobody could possibly be allergic to this," he said, "There is nothing in it that anyone could possibly be allergic to, ever. It's just not possible."

This PubMed article and the experiences of a number of people on a corn allergy forum I frequent disagree. It has happened that corn-allergic people have had severe, even anaphylactic, reactions to dextrose IVs.

Maybe it's not a "true" IgE-mediated allergy, but people can and do have unpleasant reactions to derivatives of things even if they contain no detectable protein. Given Baby E's level of sensitivity, it's certainly reasonable to be concerned that it would make her very sick even if it wasn't a truly serious reaction.

I tried to explain that Baby E definitely reacts to even very small traces of corn derivatives in things certified to have no protein--even things that don't actually contain corn but were just grown on corn, like xanthan gum. His response?

"I'm not going to argue with you about it; we are going to do the procedure and this is what we're going to give her."

You know, even if that was necessary it wouldn't have hurt him to at least ACT like he understood my concerns.

I don't care if you do think I'm a crazy overprotective mother; I am going to advocate for my child.

I'm going to find out if there is a corn- and soy-free alternative and have either my pediatrician or my allergist call and ask him about using that instead. Maybe if it's coming from someone other than me he'll take it a little more seriously.

If they absolutely do have to use a corn-derived product in the IV, I'm going to try to make sure they have an epi-pen available just in case she did have a bad reaction.

Meanwhile, we have to keep giving her gluten until after the biopsy and blood draw. She was feeling much better this afternoon, until I gave her a snack of yeast-free spelt bread (spelt does contain gluten) and grapes. Now she's flailing around crying again.

GI doctor

I called and was able to get an appointment with a pediatric gastroenterologist for tomorrow morning. I'll feel better having someone who really knows what they're doing for the celiac test and just to try to figure out what's going on with Baby E.

Now I'm trying to track down someone to watch the other two girls . . . it was tough having them at the very long allergist appointment today, even with DH coming and taking them to lunch on his lunch break. He can't take time off work tomorrow, so let's hope I can find childcare.

[Edited: Our normal babysitter is available. Whew.]

New Allergies

Well, the allergy testing today held some surprises, to say the least.

Baby E did not test sensitive to any of the gluten-containing grains. The allergist said that if she continued seeming to have problems with those grains, we should suspect a gluten intolerance. She said we were wise to do the celiac testing.

Baby E did, however, test positive to some new foods we hadn't tested for in the past. The most allergenic was banana. Yes, banana.

Probably she became sensitized to it because we've given her so much of it the past few weeks. In other words, I gave her so much banana that she developed an allergy to it.

So much for the elimination diet being a good idea.

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We didn't test for any of the other 5 foods, so I don't know whether she has developed allergies to them also. I've noticed several times this week that she seemed to get sick immediately after eating even when there's no gluten in the meal.

I was just telling DH last night that it seems her stomach is so sensitive now that no matter what she eats it makes her stomach hurt, because even bananas seemed to bother her now. Ugh.

She also tested allergic to oats and borderline sensitive to mushrooms and apples. I wish we'd gone ahead and tested pears and broccoli, but I never expected she would be allergic to bananas and apples.

Adding apples, bananas and oats to the list of foods we have to avoid significantly lessens our already-meager choices when it comes to shopping. Mushrooms won't be too hard--especially since we were already avoiding them on suspicion that Baby E didn't tolerate them well.

I don't know what to do now. I guess we'll try to get as much variety of foods we think are safe into her diet as possible, and try to rotate foods in and out so we can pinpoint any new reactions.

I'm just not sure what we're going to eat.

Quick Gluten Update

Baby E has an appointment with the new allergist today. If they are going to draw blood for allergy testing, I'll probably go ahead and have them run the celiac test at that time.

By this point I am fairly convinced that Baby E either has a gluten intolerance or is allergic to wheat. We gave her wheat again yesterday and she was miserable--stomach pain, abnormal BMs, etc. Her poor little bottom is all red and rashy. She wants me to hold her a lot and she keeps grabbing my hand and wanting me to rub her tummy.

We'll see what the allergist says today, but I think we're probably going to have to keep Baby E on gluten for a while until we find out whether they're going to want to do an endoscopy/biopsy or not. The "gold standard" for diagnosing or ruling out celiac is to go into the intestines and take a number of samples to look and see if the villi are damaged. Again, she has be eating gluten for the test to be accurate.

I think I'll try rye today and see if she tolerates it any better than the wheat or barley.

I feel like I'm poisoning my child.

Biding Our Time

Baby E has been feeling quite unwell for a week now, and it doesn't seem to be dissipating. It certainly seems as though there's something more than a cold at issue here.

A lot of it seems to be intestinal discomfort, which doesn't really fit with a cold. She's been clingy and fussy, comfort-nursing and wanting to be held a lot, tired, sleeping either very poorly or far more than would be normal for a child of her age, and just . . . uncomfortable.

It is hard to poinpoint, but there's definitely that subtle "something is not right with my child" instinct going off.

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It's not her normal allergy reaction, but it doesn't really seem related to her cold. Some days she seems to feel better than others. It seems that the days she's eaten a lot of wheat have been worse, but we can't tell for sure yet.

I think it's rather telling that she's been less than enthusiastic about any gluten-containing food the second time it's offered. Even the whole wheat noodles she loved the first time I gave them to her, eating serving after serving and demanding more, she only picks at now.

She did get a stomachache that night, complete with lots of gassiness, and then slight diarrhea and a diaper rash the next day. No wonder she started refusing wheat after that. So we cut out wheat again and went back to barley.

She does seem to tolerate barley a bit better, but it's hard to get her to eat it. She ate pancakes and waffles made with barley flour eagerly at first, but lost her enthusiasm halfway through the first serving. Now she takes a taste and turns away.

She's becoming more hesitant to try new foods, and less eager to eat even the safe, known foods. Her appetite is waning again. She's less eager to eat anything other than bananas, chicken and peaches (a newer addition to her diet). Even of that short list, she's eating smaller quantities.

DH and I agree that the gluten experiment hasn't been successful enough to move ahead with the elimination diet, at least at this point. We really can't add anything we're not already certain she tolerates well.

There's little point in adding new foods a few at a time to see how they affect her when she's already feeling badly. Since we suspect one of the foods we've already added but can't remove it again at this point, we're probably going to have to just start over with the elimination diet at some future point if it turns out that gluten isn't an issue for her.

Still, this doesn't necessarily mean she's not tolerating gluten well. There are quite a few possible explanations for her not feeling well.

Maybe last week's glowing good health wasn't related to food at all.

It's possible that the combination of her cold and teething might affect her this way, though that would be unusual for her.

Or she could have some other as-yet-undiscovered pain or illness going on.

But having that illness or whatever it is that's bothering her be worst on the days she's eaten the most gluten might be a bit of a stretch.

The real test will be what happens when we take her off gluten again, and then repeat the trial. If (and at this point it's a big if) the pattern repeats itself, then we'll know she doesn't tolerate gluten well at this point.

Even if it does turn out that it's the gluten that's bothering her, that doesn't necessarily mean she has celiac disease. A person can have an allergy or intolerance to gluten without it being a full-scale autoimmune reaction. She could just not digest it well for some reason without having even a true intolerance. It could easily be something temporary that she could grow out of.

For now, we're going to continue getting gluten into her any way we can (wheat flour, barley, or anything else) for the next few days and then do the blood test. I haven't yet added gluten back into my own diet, and probably won't for the time being.

At this point I just want to get the test over with. Then we can concentrate on finding out what she can eat instead of trying to make her eat things she may not tolerate well.

Sleeping Baby

Baby E and I stayed home from church today because she's still sick. It's day two of putting her down for a nap an hour or 90 minutes after she wakes up for the day. It seems to be working amazingly well. That saying, "Sleep begets sleep" certainly seems to be true for her.

I can't believe how much she's slept the last couple of days. Yesterday she took two long naps and was asleep for the night before 10. Then she slept through the night and dozed off again after nursing, until almost 10 a.m. She was ready for a nap again by 11:30.

I don't know if she's just catching up, or if she's sleeping so much because she's still getting over her cold, or what. But it seems like she's been asleep more than awake the last couple of days. We had to wake her up after 3-hour naps twice yesterday.

It's been almost a week since we reintroduced gluten. She's definitely not having any allergy-type reactions to the barley or wheat. There are certainly differences in her behavior and digestive system, but it's hard to tell for sure whether those are from her illness, something she's eating, or something else altogether. It will be good to see whether she gets back to the glowing wellness she had last week after her cold is completely gone.

This afternoon we have a fun family activity planned. I'll tell you about it later!

Peace and Pancakes

DH is out with the older two girls buying a birthday present to take to a little friend's party later today, and Baby E is napping.

I actually have a few minutes to myself to write a blog post with two! hands! Then I'll get to shower and do some laundry in peace.

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I finally got smart and put her down when she started acting tired, even though it was only an hour or so after she got up. To my amazement, she went right to sleep.

Usually she ends up resisting the nap when I try to put her down later. She's very tired by that point, but not at all sleepy. She ends up having a protracted battle and then not sleeping until the afternoon.

That would be all right, except that then when we put her to bed in the evening she thinks that's her second nap of the day. She wakes up chipper after an hour and is up until 1 or 2 a.m.

Last night she slept from 1:30 a.m. until almost 9. Since she's getting her first nap of the day already at 10, maybe she'll sleep again in the early afternoon and be ready for bed at a more reasonable time.

A couple of people have sent me some great yeast-free bread recipes to try. I'm hoping to get a chance to play with them this weekend.

Best of all, yesterday I came up with a waffle/pancake recipe that actually works. I made it with just rice flour, pear puree, water, sea salt, baking soda and flaxseed meal. Since the naturopath had recommended flaxseed oil for Baby E, I wanted to find a way to get some into her. This worked great.

I was so excited that I was able to invent a recipe completely my own that created a conventional food in unconventional ways. It rises a bit, makes nice pancakes, and bakes up beautifully into delicious waffles. I tried baking it into muffins, but I didn't have the oven settings just right. I'll need to play with that a bit more.

So far, the waffles are my favorite. They're especially good with a pear/banana mixture for the fruit puree.

Today I'm going to try it with barley flour and a smaller amount of flaxseed, and see if it works that way.

Inventing my own recipes is so much fun.

Kid Anecdotes

Last night Baby E picked up a piece of dirt she found near someone's shoe and ate it. I think she thought it was chocolate--a food she tried for the first time a couple of weeks ago and LOVED. (Yes, she's certainly her mother's child.)

By the time I got to her she was sticking her tongue out, trying to scrape the mud out of her mouth and gagging.

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I took her to the sink and washed her mouth out, saying, "That's not food; that's dirt. Dirt is yucky, isn't it? Yuck! We don't eat dirt."

Later, I was telling DH about the incident. Every time I said the word "dirt" Baby E would stick out her tongue and make a wry face.

I said to her, "You had dirt on your tongue, didn't you?" and she touched her tongue as if she was trying to scrape dirt off it.

I said, "Was it yummy?" and she shook her head vehemently no.

I said, "Dirt doesn't taste very good, does it? Dirt is yucky."

She gagged.

Now if I talk to her about eating dirt she sticks out her tongue and makes gagging noises. I don't think she'll try eating dirt again.

We've had the gas fireplace on several times recently. Baby E hasn't even tried to get close to it after being told. "That's hot. Ouch! Don't touch, okay? Fire is very hot."

She has an amazing grasp of such concepts for her age. We can put hot food on her high chair tray and tell her, "Be careful; it's hot. Wait a minute before you eat that," and she acts accordingly.

She'll look at the broccoli and say, "Hot. Ow." Then she'll hold her hand near it but not quite touching it. If she can feel steam rising from it she'll say "hot" again and wait a bit to try picking it up.

Once it's cool enough to touch, she'll feel each piece carefully to find the coolest one. Then she'll take it to her mouth and carefully touch it to her lips to see if it's cool enough to eat.

We never have to worry about Baby E burning herself when we give her hot food with a warning "That's hot!"

I know 3-year-olds who have trouble with that concept.

I've also been amazed at how well AJ and M&M are doing with their reading and math.

AJ just picks up and reads things like informational fliers from the doctor's office, without even needing help pronouncing words like diarrhea. M&M is reading lots of children's books from the library, such as "Where does it belong?"

Last night I fried the chicken in a stainless steel pan instead of cooking it in water. Even with nothing added, it's delicious that way. The frying makes a nice crispy brown coating on the chicken.

As the girls and I devoured the meat, we did math problems with it.

"There are two pieces left here on the plate, but four of us here who want some. What do I need to do to make sure everyone gets a piece?"

AJ: "Cut them in half!"

"If I cut each of these two pieces into four pieces, how many pieces would each of us get?"

M&M: "Two!"

They really enjoy those on-the-fly math lessons. I think they find those even more fun than their math workbooks, which they also enjoy.

I'm just glad they enjoy math so much. Math was probably my least favorite subject in school.

Adding Foods

It's looking to be a fairly peaceful day today. Baby E is definitely on the mend, though her nose is still quite runny. The older two girls seem to be coming down with the cold. They're a bit whiny and snuffly, but so far not too ill.

AJ and M&M are making and cutting out Thanksgiving decorations. After we do some schoolwork, we're going to roll and cut out gingerbread cookies. I made the dough last night, so it's nicely chilled by now.

I'm going to have to come up with some other treat that Baby E and I can eat; maybe I'll try to modify a banana bread recipe.

The sun came out a few minutes ago, and it looks like a beautiful fall day. We might have to take a walk later.

This morning we're eating bananas and fried lamb's liver for breakfast. The older girls also had toast and scrambled eggs.

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All three kids tried the liver and didn't dislike it, but weren't crazy about it. AJ and M&M both said after one bite that they liked it, but were full and didn't want any more. Baby E ate her first few bites happily enough, then decided to stash the last few pieces in her ear.

I like it. It's definitely milder and sweeter than the beef liver we had last year. It's extremely tender, and has fewer veins to work around. Best of all, it's much smaller. The two lamb livers we got are less than half the size of the huge beef liver we had last year.

We also got 5 lamb hearts, because apparently nobody else who got lambs this year wanted the hearts. They're all soaking in salt water in the refrigerator right now.

If lamb heart or liver are foods any of you readers eat, I'd love to hear how you like to prepare them.

We didn't get any tongue this year, which was disappointing. That's my favorite part. But the heart and liver should certainly help fill in some of the iron and other nutrients we're missing from our diet.

We finally bought a used freezer from one of DH's coworkers. It's a full-sized upright freezer; very nice. Soon it will be full of meat.

We're buying a lamb and half a beef this year from a local farmer my grandparents recommended. They're raised naturally on pasture land, with just grass, hay and grain to eat. The local butcher uses no additives in the processing or the packaging. They simply hang the meat, cut it up, wrap it in freezer paper and freeze it.

DH and I had a talk last night, and decided to alter our diet plan a bit. My original plan was to establish a baseline with the minimum 5 foods. Then I had planned to add several foods at a time of the foods we're fairly sure Baby E doesn't have a problem with, adding a handful of foods all at once every few days and watching to see if she had a problem with any of them.

My naturopath advised that instead of adding several foods at a time, we keep it to only one item every 4-7 days. That makes sense for the foods that might possibly be problematic for Baby E. But it seems it might be a bit of overkill for the foods we're fairly sure she's already been tolerating well.

So we did a cost-benefit analysis.

If we add new foods a few at a time, and she has no reaction, we've just cut several weeks off our elimination diet process, added a lot of variety to our diet, and made my life much easier and less stressful. If she does have a reaction, we'll know which 3 or 4 foods are likely to be the culprit, back off, and reintroduce each food in the group one at a time.

I'm glad I cut us down to just a very few foods at first. That allowed us to establish a baseline and verify that there was indeed something in our diet that was bothering Baby E.

At this point, though, I don't think it's absoutely necessary to add just one element at a time to our diet. It seems there's more benefit than risk to adding several foods at a time, especially at this early stage when we've been eating only 5 foods for what seems like forever.

The things we're adding at this point are foods we're pretty sure she's not allergic to, anyway. If we could even add 5 foods in the next week or two, that would make a huge difference. We really need more of a variety of foods in our diet as soon as possible just for nutritional reasons, besides the obvious monotony factor.

So we're going to at least give that a try. Can you hear my huge sigh of relief echoing across the internets?

Why make life any more stressful than it has to be?

Wanted: Yeastless Bread Recipes

Since Baby E seems to be doing fine on wheat, I'm planning to add it to my own diet tomorrow. For Baby E's new food I'll probably try cooked spinach. We'll see if she'll eat it or not. :)

I think I may go ahead and add baking soda to both my own and Baby E's diet, too--it's pretty hypoallergenic. Baking powder will have to wait, as it contains several possible allergens. Once I add lemons I'll be able to use lemon juice and baking soda as a baking powder substitute, anyway.

What I need is some bread recipes.

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There are a few restrictions: Yeast is out, unless it's gathered from the air, because yeast is generally grown on or processed with corn. Nuts are out. Eggs are out--I don't plan to add them until we can find a source of eggs from chickens that aren't fed corn or soy. Dairy products are out for now, although we'll probably add them in again later, at least for Baby E. The only sweetener I'm using at this time is pear juice.

I pretty much need a recipe that's just flour, salt and water, I think. I found a few online I'm going to try, but I'd love to have something that's actually been tried and enjoyed.

Some recipes with oil or fat are ok . . . I am going to try rendering some chicken fat, and will probably add flaxseed or another oil soon. Recipes with no added fat would be easier for now, but I'll be able to use fat soon I think.

I'd really like to find a few good, fairly foolproof recipes for things like muffins, crackers, tortillas, sourdough bread or salt bread, and unleavened bread. I know I have a few Jewish readers out there, so I was hoping maybe a few of you would share your favorite unleavened bread recipes.

The best recipes I try will be posted on Restricted Gourmet with credit to the contributor, unless you ask me not to post it there. Speaking of Restricted Gourmet, I thought I was going to start out by mostly copying some of the recipes from here over there. But I've actually already started posting some new information and recipes. They include Breakfast Banana Splits and Simple Soup Stock. More will probably be coming soon.

I'm thinking about trying to come up with some kind of bread using just whole wheat flour, water, salt, pear juice or mashed pears, and baking soda. Do you suppose the pears would be acidic enough to react with the baking soda and make the bread rise a bit? I guess we'll find out. I may try making something like that tomorrow.

Resuming Sanity

Well, I'm feeling much better today than I have been the last couple of days. Two days of little sleep and eating almost nothing can really send a person for a tail-spin.

I think the reason I was feeling so much better after the first few days on the elimination diet probably had little to do with what I actually was or was not eating.

I'm guessing it had more to do with the fact that I was getting better sleep and eating more protein earlier in the day, and maybe even more food overall throughout the day.

The last couple of days, I didn't do so well.

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We ran out of a few of our basics, and because of a combination of factors (no car, sick baby, tiredness making cooking less appealing, etc) I ended up just eating very little (giving most of the chicken and rice to Baby E, for example).

Since I'm a whopping 104 lbs (when bloated and retaining water) and have hypoglycemic tendencies on top of producing milk for Baby E, my body doesn't handle that well.

By 3:00 p.m. yesterday I had managed to eat a grand total of one banana and half a pear. A third of a cup of rice and most of a chicken thigh did little to redeem the situation by that point.

On top of yesterday's similar meals, it was just too much. Or rather, not enough. My blood sugar must have been pretty low by that time. Adding in seemingly worse-than-usual monthly hormone swings clinched the downward spiral.

By the time DH got home from work I was in full melt-down mode. Everything seemed hopeless. I was crying over nothing in particular, approximately every 3 minutes.

A solid meal and some time to rest (thanks to DH going grocery shopping and taking over with the kids) helped a lot. Having DH take care of the sleepless Baby E while I went to bed helped even more. Even though she seems to be sleeping well and is sleeping through the night once she gets to sleep, she hasn't been going to sleep until 1 or 2 a.m. no matter what we do.

This morning I'm back to measuring food quantities and keeping track of what I'm eating so I can make sure I'm taking in enough nutrients. If I eat 2-3 cups each of brown rice and broccoli, 2-3 chicken thighs and at least 3-4 pieces of fruit each day, I do all right.

That quantity gives me a little over 400 mcgs of folate, far more than enough Vitamin C, and almost 1400 calories. It's more protein and carbohydrates than I need, but severely lacking in vitamins A, most of the B vitamins, Vitamin E, iron and calcium, among other things. If I ate more broccoli that would help a bit, so I need to work on that. But those 5 foods just don't make a complete balanced diet by themselves.

The allergist who suggested that we consider an elimination diet if Baby E continued having indeterminate allergic reactions is unavailable. He's out on paternity leave (just had a new baby) and they don't know when he'll be back. So that leaves me trying to figure this out on my own. Frankly, I feel I'm in over my head.

My plan for today is to find and get an appointment with a dietician or nutritionist (what's the difference between the two, anyway?). I want to find one that's experienced dealing with extensive food allergies and elimination diets. That way I can find out whether we're on the right track or what we need to do differently.

Hopefully he or she can help me figure out what to add in what order and with what frequency. I'd like to get to the point where we're eating the right quantities of a good variety of foods to be healthy. We need to be getting enough of all the important nutrients as soon as possible.

Baby E does seem to be feeling better today. I'm pretty convinced by this point that her misery the first few days of the week was related to illness and not gluten. She seems to be doing quite well with wheat. I really doubt she has celiac disease or even gluten intolerance.

We'll probably still do the blood test in a few weeks just to be sure, but I'm not worrying about it for now. For now, the focus is on introducing foods one at a time to identify any allergens.

Cheating

I'm getting a bit frustrated with the elimination diet at this point. I'm so badly craving something, anything, other than chicken, brown rice, bananas, broccoli and pears. The amount of self-control this takes is astronomical.

I was going to wait until a few days after Baby E was eating a new food with no symptoms before I started eating it. After her nursing strike last week and knowing how much it affects her when I ingest corn or soy, I really don't want to contaminate my milk.

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Baby E doesn't like the butternut squash we tried to introduce last weekend. At most she's only been willing to eat small tastes here and there. So I wouldn't exactly call that a successful introduction of that food into her diet. Often when she refuses a food it later turns out that she's allergic to it. So then, do I add squash to my diet or not? I haven't taken the risk.

We've added barley and wheat back in to her diet now, but it's too early to tell whether they're bothering her or not. I haven't added them to my own diet, and I'm not sure yet whether I will.

When I was feeling so much better I thought maybe it was from the diet, but the last couple of days I'm feeling worse again. So I'm thinking it's more the amount of sleep or lack thereof that's affecting me more than what I'm eating.

It's much easier to stick to something like this when I'm feeling good and seeing improvement in Baby E. Even if I felt it was actually helping us to identify allergens, it would be a little easier. But I'm not sure the squash and barley have showed us anything except that Baby E doesn't like them. She sure didn't seem to have any ill effects from the squash, anyway. It's impossible to tell with anything since then, because her illness complicates things.

I haven't cheated so far, even just to take a tiny taste of something the rest of the family was eating. But I cheated today. I ate some fresh whole cranberries. I'd wanted to add them to our diet because they are high in some nutrients that we were missing. I highly doubt she's allergic to them, but I really don't think she'll eat them herself, as tart as they are.

So I went ahead and ate them. I probably shouldn't have. They tasted so wonderful. I guess I'll have to just wait and see how she responds to the cranberries in my milk. I don't like having to wonder, so I don't think I'll cheat like that again.

I think it would make things so much easier if I could just add in some basic things like baking soda and some kind of cooking oil (I tried skimming the chicken fat off the broth from cooking after chilling it, but it has too much water content to be useful). But I don't want to go too fast or add too many things at once. Our original goal was to leave 4-7 days between adding things, but we've already added a few faster than that.

We really need to be getting more calcium and folate in our diet, among other things. I'd like to add spinach to help with that, but am just not sure adding anything else in the next week or so is a good idea. I'd at least like to let Baby E get over her cold first. But even if we do add something else at that point, how will we tell whether it's the new food or the cumulative effect of the gluten?

I'm half tempted to give up on the elimination diet for now and start over again after the celiac screening. If she's feeling miserable anyway, how will we be able to tell which foods are problematic and which foods aren't? At the same time, it seems likely that her current discomfort is just from her cold. She's holding her head and ears when she cries, not her stomach. I think it likely that once she's over her cold she'll be just fine.

There's just no real evidence that the gluten is bothering her at all. We can't rule it out at this point, though, either. We're just in limbo.

This isn't so easy to figure out all by myself. I wish the medical professionals were a little more helpful.

Blah

Baby E was quite unwell again yesterday, and kept us up until 2 a.m. She seems to be feeling a bit better today, though. She was well enough to spoon her chicken soup onto her head and laugh hilariously at it.

I think the issue with her refusing to eat the barley may have just been that she didn't like it. Nobody else who tasted it reheated liked it, either. We've been mixing whole wheat couscous into her food, and she seems to be doing fine with that. At least she hasn't had any obvious allergic reactions.

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I'd like to try making some biscuits or waffles or something, but that would involve a number of ingredients we haven't yet reintroduced. I think we'd better stick to just plain barley and wheat for the next few days. Besides, I don't want to add anything else until she's over this illness.

It's still impossible to tell whether she's miserable from the cold, the food or a combination of the two. But she slept better last night once she got to sleep, and is a bit more cheerful today. Still fussy and clingy, but making progress I think.

I tracked down the number for a pediatric GI specialist in the next state and called to ask how long she needed to be back on gluten before testing. They said at least a week, preferably 2--the longer the better. That seemed a much more believable answer than the "oh, a day should be fine" answer the nurse at our pediatrician's office gave me.

I haven't even pretended to do school with the older girls the last couple of days. They watched a video about butterflies and moths today, and they've spent the rest of the day reading book after book aloud to each other, coloring, and playing with dolls. Tomorrow I'll try harder.

Tonight, I think all I'm going to be able to manage is cooking 2 separate dinners and doing a load of dishes and laundry. I'm so far behind on all that it's not even funny.

Right now I'm just trying to keep up with feeding everyone and keeping us all alive and reasonably cared for. Speaking of eating, all the broccoli we bought two days ago is moldy.

I'm really tired today, and fighting discouragement. Just kind of feeling burned out, I guess.

Getting some sleep would probably help. I'll be fine, I'm sure.

Hopefully Baby E will be feeling better soon.

The Burning Question . . .

How can we tell whether Baby E can tolerate gluten or not if she refuses to eat it?

She's gagging and spitting out the barley today. It makes no difference whether it's in cooked grain form or blended up and fried into pancakes. She's eating other foods fine--just refusing the barley.

Baby E seemed to enjoy the barley last night. Now she'll have nothing to do with it.

Not So Happy Again

Baby E had another fabulous day yesterday. We even left her with a babysitter last night, along with the older girls. When I said goodbye Baby E just grinned at me and toddled off in another direction. That's so unusual for her.

It was a wonderful few days.

After talking with the pediatrician and getting some input on a celiac support forum, we decided to go ahead and introduce barley yesterday. It's fairly hypoallergenic. We're pretty certain she's not allergic to it, but it is a gluten-containing grain.

I gave her some cooked hulless barley for dinner last night. She enjoyed it. I expected that if it was a gluten issue, it would probably take a few days for it to start bothering her.

Unfortunately she started coming down with a cold last night, and she has a very stuffy/runny nose this morning. Great timing, that.

By bedtime last night Baby E was a bit fussy. Once she got to sleep, she slept very fitfully. She kept whimpering and crying in her sleep. I'd hear her crying and go in to her, only to find her asleep. She only woke completely once, but she had a very restless night.

This morning she's very tired, whiny and clingy. She had a full-blown flailing and screaming episode after breakfast. She took a brief and fitful nap, but woke up screaming as soon as I tried to lay her down.

Only time will tell whether it's the gluten, the illness, or some combination of the two.

Right now my project is trying to find out exactly how long we need to have Baby E back on gluten before we can do the testing. She's only been completely off gluten for a week, but she ate it only sporadically before that--probably a few times a week.

It could be a very long few weeks before we can do the celiac testing and stop feeding her gluten again.

Happy Baby

Baby E woke up around 1 a.m. last night and was acting like she really wanted to nurse but wouldn't. After an hour of fussiness and restlessness, I finally went out on a limb and persuaded her to try nursing.

After that she seemed quite contented. She made her "want" sign toward her crib, and actually chuckled with pleasure when I went to put her to bed again. She happily laid down and went to sleep. She slept soundly until 9 a.m. and woke up happy.

Today she was obviously feeling great.

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She was cheery and social, happily going to other people for long periods of time (which is unusual for her). She napped well even though her schedule was a bit thrown off by church.

There were a number of situations where she normally would have thrown a huge long-lasting tantrum, and didn't. To my surprise she protested little or not at all, took it in stride and went happily on to something else.

She was just so extremely happy all day. Almost every time I looked at her she was smiling, giggling and interactive. None of that almost-blank stare and deadpan face she gets when she's feeling ill and tired.

If I had to eat nothing but chicken, brown rice, broccoli, pears and bananas for the next year it would be so worth it to have her feeling this well.

We're not really starting to get tired of the diet, either. There are really a lot of ways you can prepare and combine just a handful of foods; I haven't even come close to trying all my ideas yet.

It was exciting, though, to see that she seemed to do well with introducing butternut squash today. She ate a fair-sized serving and there's no sign that it's bothering her yet. I'll eat some tomorrow or the next day if she seems to have no ill-effects from it.

I plan to introduce apples in a couple of days if she continues to do well with the squash, and then lamb and probably at least one other vegetable. All those things are foods I'm pretty certain she tolerates well. If there are no problems my current plan is to move fairly quickly introducing those next few foods, probably 2-3 days apart instead of the 4-7 days we'll allow for other foods.

Then we'll probably start introducing some gluten-containing grains.

I was going to wait as long as possible before introducing gluten again, since both she and I are feeling so well without it. But that raises a problem; in order for any celiac tests to have a chance of being accurate, the patient has to be consuming lots of gluten for a long time before the test.

Celiac is a generally slow-acting autoimmune disorder, very different from a food allergy or intolerance. It can take months or years of exposure to gluten before it really starts doing measurable damage, and the body starts healing itself very quickly after gluten is removed from the system.

Even a week off gluten just before the test can cause a false negative. Ideally the person needs to be consuming at least the equivalent of 1-2 slices of wheat bread per day for 6 months or more before the test. The very minimum amount of time a person needs to be consuming lots of gluten before the test seems to be at least 6 weeks from what I've been reading. Even then, you can still get a false negative with a blood test and biopsy if the case isn't severe.

I'm not going to worry about that, though. If she seems to be doing well on grains like oats, barley and wheat after eating them again for a few weeks and she tests negative, I'll consider that we've ruled out celiac.

Hopefully she'll be fine with the gluten grains, and we'll end up coming to the conclusion that her recent reaction was just a cross-contamination issue with the Terra chips. It's quite possible that it was just a cross-contamination issue and that she's not actually allergic to sweet potatoes at all. We can hope, right?

Either way, I'm enjoying having such a happy baby right now.

Plodding Forward

Baby E seemed quite back to normal today.

After breakfast she had a couple of ounces of pumped milk in a bottle. When she realized that didn't make her sick, she wanted to nurse again.

She asked to nurse frequently today, and didn't have any excessive fussiness or strange symptoms other the crankiness inherent with missing a nap.

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She didn't ask to nurse before bed tonight, and I didn't try to persuade her to. My guess is that her discomfort last night had something to do with the sheer quantity of milk she ingested just before going to bed.

It could be that in such large quantities, the residue of allergens left in my milk was enough to bother her. Apparently it can take up to 2 weeks before proteins from a specific food completely stop being passed in breastmilk.

Or, it had nothing to do with anything except that so much milk made her sloshy in the tummy and maybe gave her reflux. When she woke up, maybe her tummy hurt a bit and she couldn't settle back down because she was hungry.

I don't know, but she's asleep for the night already well before 10. We'll see how she does tonight.

Interestingly enough, even though I didn't get much sleep last night I wasn't all that tired today. I felt really awful and excessively fatigued the first few days of our elimination diet. But the last few days I've had more energy and felt better than I have in quite some time.

My guess is that something about this elimination diet agrees with me, too, along with the changes we've been making to control dust mites.

In my research today, I discovered something interesting. According to at least one study, gliadin proteins (one of the proteins in gluten) have been shown to be passed undegraded in breastmilk in significantly higher quantities than many other food particles.

We haven't done any tests on Baby E for celiac; I'm going to ask her doctor to do that. I suppose it's possible that Baby E's hard-to-pinpoint reactions to so many things like bread and flour were due to a gluten issue rather than to cross-contamination or yeast grown on corn, etc.

It's probably a good thing to rule out, anyway, especially considering that we do have celiac on both sides of the family.

It's very common for people with celiac to manifest as being allergic to a huge variety of foods. In such cases those intolerances usually resolve themselves once gluten is removed from the diet and the gut heals. Another very relevant fact is that supposedly 40% of celiacs are also allergic to corn and soy. I also found out that the type of cancer my grandfather died from (intestinal non-hodgkin's lymphoma) is often linked to celiac disease.

Interesting, isn't it?

Speaking of health issues, I'd really appreciate everyone's thoughts and prayers for my Sis J who is away at college. She's been very sick for quite some time, and the doctors want to do yet another battery of extensive testing to try to figure out what's wrong. (She's not the sister with celiac, BTW.)

My mom flew out this morning to be with her and take her to doctor's appointments, since the only doctors covered by their insurance are a very long way from J's school. Apparently the exception for seeing a doctor outside the system if an in-system doctor is over 100 miles away only applies in true "emergencies." Grrr.

Please pray that she'll be able to get some answers and feel better soon. It's really making her university courses difficult for her, too. I'd really like to see her get healthier.

Little sister Amy has been ill, too, and could use some prayers for health also, as could my mom for health and safe travels.

I think I'm the healthiest sibling in the family at present, which isn't saying much. :) At one time or another we've all had chronic severe illnesses that the doctors can't seem to find answers or even a diagnosis for.

Sleepless

Well, Baby E nursed a lot from dinnertime until bedtime. 3 times in 5 hours, to be exact.

She went to sleep easily, while nursing. She seemed so extremely happy and contented.

Then she was awake from 3 a.m. to 6 a.m. We brought her into our bed, where she tossed and turned and wouldn't settle down for an hour. Then we tried to put her back into her own bed. She screamed and screamed. DH tried to cuddle her to sleep and she screamed some more.

I don't know if she was just hungry or if something else was bothering her, but we didn't want to give her solid food in the middle of the night (we've made that mistake before--then she wakes up every night at that time expecting a meal) and she didn't want to nurse.

So she had water, and eventually dozed off fitfully in our bed, rubbing my face and arms for comfort. When I woke up a couple of hours later, she was still tossing and rubbing my arms.

This morning she's refusing to nurse again.

Maybe there really is something wrong with my milk?

Nursing

Photo inside.

Finding Normal

Baby E's system seems to be regulating itself, finally. She's having much better diaper output. I blended some pears with enough water to make a thin mush and she liked that, and with that and the soup she had more fluid intake today.

Then, after lunch, she amazed me by drinking all the milk I pumped throughout the day yesterday in one sitting.

I had a chiropractor appointment this evening, so DH came home to stay with the kids and the cooking supper while I went. When I got home, Baby E was very glad to see me.

Then she asked to nurse.

I was suprised, and expected her to turn away once she got close. But she didn't. She didn't shake her head and clamp her mouth shut. She nursed, and nursed, and nursed.

I didn't know whether to laugh or cry, so I did both.

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I had been starting to doubt my instincts. I'd been so sure that she really wanted to nurse, but she wouldn't. It's been a week now since she started refusing, and by today I was thinking she would probably never nurse again.

It's interesting, because she was still mostly refusing the milk even from a bottle until we'd both been on the elimination diet for a couple of days. It was the third day's milk that she finally drank eagerly, for the first time.

I can tell signs in both of us that yesterday and today was when the other things we'd been eating were finally really starting to clear our systems.

Interestingly enough, the first two days on the elimination diet I felt terrible and excessively fatigued. Yesterday and today I've had so much more energy. I'm no longer hungry all the time. I'm seeing signs that my own body is doing better on this diet.

I'm not sure what it is, but I suspect that it may not even have been the sweet potatoes. At least not exclusively. I suspect something more pervasive, like gluten.

Since it seems that things are just now starting to stabilize, I don't think I'll add any new foods yet. For some reason I just didn't want to try that today, and now I'm glad I didn't. I want to let Baby E and the content of my milk stabilize before I try adding anything else.

Then I think I'll introduce new foods to Baby E a day or two before I eat them myself, just so if she does have a problem with something I won't prolong her agony by contaminating my milk.

I'm so glad I followed my instincts and was persistent with this. I'm just thankful for Baby E's sake that she has a mother who is willing and able to do the things we've been doing.

I put a prayer request on the prayer chain at church this week. I know many at my church, readers here, and other family and friends were praying.

So, I just have to say this:

Praise the Lord! Thank You!!!!

What to add next?

The broccoli, rice and chicken soup I made last night was amazingly flavorful and delicious. I never would have believed a 3-ingredient soup flavored with only salt and pepper would be so good. Everyone loved it; especially Baby E.

I'll be posting the recipe later on my new food blog: Restricted Gourmet.

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I kept thinking about upgrading to Blogger Beta, but I'm just not sure I want to do that with this blog yet. Then I realized that the main reason I really wanted the tags was so that people could easily find all the recipes I've posted. That has an easy solution; I'm just going to copy them all over to my new blog where I can label and tag them to my heart's content.

I'd really like Restricted Gourmet to become a resource for people with food restrictions to get recipes and information on working around the foods they can't eat. It will be a combination of actual recipes and also suggestions about how to work around dietary restrictions and alter recipes, what ingredients to substitute, how to get a desired result with unusual methods, etc.

With this new blog I envision taking requests to find or develop recipes for special dietary needs, and posting them on the blog as I come up with them. If that works, eventually it would be much the way Ask Moxie works, but with food and allergy types of questions instead of parenting questions. I'm already doing some of that one-on-one, so it would be nice to have a place to post ideas and recipes where they'll benefit more than one person.

I'm hoping the readers will make their own contributions and suggestions, help test recipes, and report back on how the recipes worked for them and any changes they made.

For now, though, I'll probably just be going through my archives and posting the recipes I've already posted here on the new blog. I'll also post the new recipes I come up with over there.

I don't want to get in over my head, so I'm not really making any goals or commitments about how often I'll post there. For now, it's mainly just a place to put the food and recipe stuff where it will be easier to navigate and use.

Baby E slept through the night again last night, this time from around 11 to 8:30. Hooray!

She still seems to be doing well with the restriction diet, except for a couple of things:

First, she's still picking at her ears quite a bit. Maybe she's just fascinated with them; maybe she likes to play with them; maybe they're bothering her because she's teething. I don't know.

Secondly, and more concerning, she's not having good potty output. I'm worried that she's not getting enough fluids.

She'll drink only water, and is taking maybe an ounce or two of my milk in a bottle or cup per day. That wouldn't be a concern, except that I think she's not getting enough water even though we're constantly offering it to her and she always has a sippy cup available.

Baby E is not having much urine output at all, and she's only having bowel movements every other day--many of which just look like a solid pile of brown rice.

Not only has she significantly cut down on her fluids, but I was realizing that almost all the foods I'm giving her tend to create more solid bowels. She ate three bananas yesterday, and lots of rice. She's also eating the pears, chicken and broccoli, but the bananas are certainly her favorite.

Today is day 4, and I am planning to add another food. I think it should probably be a vegetable, since we already have two fruits and only one vegetable.

I was going to make it celery, but she doesn't like celery much. To get any real benefit from the new food, she needs to actually eat it. So I'm thinking maybe butternut squash. It is high in fiber and I'm pretty sure she'll eat it in good quantities. But I'm not sure if it will help the current issues or not. Does anyone know what foods are good for that?

I'm also wondering if I should try another grain instead of the brown rice for a few days, and see if that makes a difference.

I think I'll call her pediatrician today and see if I can get some advice. Maybe the allergist too.

Since she's not really drinking any of the milk I'm pumping and showing absolutely no interest in nursing, I'm thinking I may stop pumping if something hasn't changed by the beginning of the week.

Today it's been a week since she started the nursing strike, and on Sunday it will be a week since she last nursed at all. If she was actually drinking the milk I was pumping, I'd probably keep pumping for a while. But at this point I'm not sure she's going to do that, and it's seeming less likely that she'll start nursing again.

Actually, I'm not sure if I'll stop completely or just take it down to 2-3 times a day. I'll probably keep doing it at least a couple of times a day for a while just for my own comfort, if nothing else. It's a big change to go from nursing every 3-4 hours during the day and 1-3 times at night most days, to nothing.

I think I'll still stay on her diet for at least a month or so just in case she changes her mind. I'd hate to have her asking to nurse and have to say no because I've eaten something that might be a problem for her.

Conversation with the Doctor

I can't believe how much better I'm feeling since cutting out maple syrup for Baby E's sake. I thought the yogurt and whipped cream I used to be able to eat in moderation were making me sick. But once I cut out maple syrup to flavor them and started using honey or fruit instead, suddenly those items didn't bother me at all any more.

Since I tested allergic to maple pollen, I guess it makes sense that maple syrup would be a problem.

The other thing that's made a huge difference for me is minimizing dust mite exposure. I'm noticing a distinct difference in my "fibromyalgia" symptoms--my pain levels and ability to sleep well, as well as the respiratory symptoms and headaches, fluctuate drastically according to my dust mite exposure. With allergen covers on the mattress and pillows, and washing all bedding frequently in hot water, I feel much better.

If I spend any amount of time in our most dusty, cluttery rooms (especially the rooms that have bags of clothes I bought at thrift stores and haven't dealt with yet) I seem to get an immediate flare-up of the fibromyalgia and chronic fatigue symptoms. Any exposure to mildew makes it even worse.

All that, of course, begs the question of how much of the supposed FMS/CFS is really just allergies.

The real challenge is how to get the clutter and the items infested with mildew and dustmites cleaned up without making myself sick in the process. So far I've ended up quite ill whenever I've tried to work on it for any length of time. No wonder it's so hard for me to keep up with housework or declutter--it literally makes me sick.

I think once that's done, though, there should be a huge difference in my health--especially if I can carve out enough time from cooking and taking care of the kids to actually do some vacuuming and dusting once in a while.

On a related note, I talked to the naturopath who was such a help to me in dealing with the FSM/CFS symptoms in the past. She recommended that we add just one food at a time, 4-7 days apart.

She said that with very allergy-ridden kids, she's seen good results with adding three things to their diet to help the body, immune system and digestive system heal itself. It seems pretty simple; just a fatty acid (such as fish oil, evening primrose oil or flaxseed oil), probiotics (the good bacteria such as acidophilus that are the active ingredient in yogurt), and glyconutrients.

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We're going to try adding some flaxseed oil to our diet and see if Baby E tolerates that. I've been trying to make sure we get yogurt in our diet, but I recently bought a yogurt maker and will probably experiment with making some out of homemade rice milk. We're going to try a particular probiotic supplement to see if Baby E can tolerate it, too--it has no ingredients other than the acidophilus and other organisms in it.

My naturopath recommended a particular glyconutrient supplement (Ambrotose), but I checked the ingredients and it looks like some of them may be corn- or soy-derived. So I'm going to find out if I can just add some of the whole foods it's derived from, such as aloe and seaweed, to our diet instead. I much prefer eating whole foods rather than taking pills or powders, anyway.

I'm going to do the same protocol myself--it can't hurt, and it would certainly be nice if it would help me to be a healthier and less impacted by allergies. I'd really like to feel better and have more energy.

We're also going to test both Baby E and myself for Candida yeast and bacteria levels. When I was the sickest back in college, I did this test and had astronomically high levels of both. Treating the yeast and bacteria levels and supplementing with a good probiotic and a healthy diet supplying the needed nutrients made a world of difference for me at that time.

I've been wondering for a variety of reasons if I and/or Baby E have a candidiasis issue at least contributing to our symptoms. Especially since I know that was a primary contributing cause to my health problems in the past, it makes sense to look in that direction. We'll at least be able to rule it out, or treat it if necessary.

My naturopath said we should be able to tell within a month if what we're doing is really helping or not. I trust her enough to give just about anything she recommends a try, since I have a longstanding relationship with her and she's helped me so much in the past.

Now I'm off to make some rice pancakes with pear syrup, served with a side of chicken. Tomorrow I think we'll add celery.

Non-Traditional Breakfast

Baby E slept straight through from midnight to 8 a.m. last night. She woke happy and hungry, and excessively disinterested in milk in any form.

She's drinking so little of what I pump (3-6 ounces total, if that, over the course of a day) that I'm thinking if she doesn't show more interest soon I may stop pumping. At this rate, if I pump for a week or two then I can stop pumping and the frozen milk will last her for maybe another month.

At the moment she's sitting in her high chair having water, banana, brown rice and chicken. I'm eating the same thing--it's really easy to just heat up leftovers for breakfast. Once I get past my cultural preconceptions about what breakfast should be, that opens up all kinds of possibilities.

Baby E is cooing and waving, and saying "hi" across the room to her doll. She really loves that doll, and seems convinced that any day now it will respond when she waves and says "hi" to it. It's rapidly becoming the comfort object she wants at bedtime and every other time, although she still wants lots of cuddling from Mommy.

Surprisingly, even without the milk element, Daddy is not an acceptable substitute for the cuddling. He's the one for playing.

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The older girls are eating bacon, banana, and squash pudding as I type. The squash pudding is simple and healthy, with just a bit of honey for sweetener . . . made from a pumpkin pie recipe in the Eating Better Cookbook series.

Pumpkin pie minus the crust is pumpkin pudding, and it's so quick and easy to put together. This time I made it with butternut squash. The kids love it. That pudding is the one thing taking the most willpower for me to resist right now. It smells delicious.

For lunch today, I think I'll make rice pancakes. Yesterday I tried blending some sticky sweet rice with water and cooking it different ways--frying like pancakes, baking a small amount in the bottom of a silicone muffin tin, and baking like cookies on a cookie sheet. The most successful was frying in a non-stick pan, but they were a bit touchy to cook because of the excessive gumminess of the rice.

I think today I'll try that again, but with a mixture of sweet and basmati rice. I've been chilling the liquid from braising chicken and skimming off the fat as it solidifies, so I actually have some oil to try cooking them in.

And, I'll have syrup to put on them. Yesterday I made pear sauce by simmering sliced pears in water and mashing them. I drained off the liquid and simmered it gently until it thickened and carmelized, becoming an amber colored syrup with a surprising amount of sweetness.

Tonight, I think I may try making a soup with the reserved liquid from cooking yesterday's chicken. I simmered it down until it was thick and strongly flavored, and it should make a nice soup stock. Chicken, broccoli and brown rice should make a good soup.

Maybe I'll have to publish a cookbook--101 ways to cook rice. Or maybe I could do a whole series of "Cooking with 5 Ingredients or Less" with different volumes for various dietary needs. One volume could be full of recipes using only rice, chicken, broccoli, pears and bananas. Another could be lamb, celery, squash, amaranth and apples. *Chuckling.*

In a little over an hour I have a telephone consultation scheduled with my naturopath. Hopefully she'll be able to give me some suggestions about which foods to add in what order, and how much time to leave between adding foods.

It certainly does seem that our experiment is successful so far. I think if Baby E goes for a significant amount of time (a week or two at least?) with no discernible reactions and seems to be feeling well, we can be relatively certain that there's not some underlying problem that's not diet-related.