Here I Am

DH got back late last night from a 5-day business trip. The kids and I really missed him. But overall it went pretty smoothly. The older girls are old enough to understand now that Daddy's going on a trip and when he'll be back. With starting new school activities and lots of get-togethers with friends, they did just fine. We talked to him on the phone almost every day, and that helped.

Baby E, though, didn't understand. She was especially disturbed that Daddy was gone. She kept asking, "Where my Daddy? Where Daddy go? What Daddy doing? Where my Daddy go?"

Monday was the first day in a month or two that I'd really felt normal, and like I had energy. It only lasted a day, though. I think one or more of my allergens must be high in the air around here, because I feel awful. I'm once again at the point where just trying to get myself dressed in the morning and meet the kids' basic needs seems like an almost insurmountable challenge.

I can exert myself, though, and at least for short periods nobody would even know how hard I'm pushing myself to appear normal. If I can at least lie down for a few minutes a couple of times a day I can manage. I'm way behind on communication and keeping up with friends, among other things, and I'm sorry about that. I'll try to catch up soon.

Baby E has had GI issues at some level on a pretty much daily basis. She has been napping less than half the time, and having a hard time going to sleep at night. Most of the time, though, she's still sleeping through the night and acting pretty normal other than being a bit fussy and short-fused, having GI symptoms and wanting to nurse a lot.

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It seems like every time we reach a new plateau, we become aware of symptoms that weren't really hitting the radar before. Now that she's not screaming inconsolably or having rashes very often, I'm able to pay closer attention to variations of things like bowel movements and excessive gas/burping/reflux.

Between that and her newfound ability to tell me when her stomach is hurting, I'm noticing issues more now that just didn't seem as big a deal before. Kind of like when you have a bad headache, and after it goes away you realize that you twisted your ankle and hadn't even noticed because the headache was so all-consuming. Once the headache is gone, all of a sudden the ankle seems to hurt worse.

She's having really watery diarrhea only a few times a week, but the rest of the time she fluctuates between constipation, very soft sort of frothy BMs, lots of undigested food, etc. She has a lot of gas and general discomfort, too. Things still just aren't really normal down there for her, for even 24 hours at a time. I would so like to be able to make her truly comfortable at least some of the time.

She's such a little trooper, though. Most of the time she's happy and energetic even when having severe diarrhea. It takes quite a lot of discomfort to make that sweet smile leave her little face.

We still haven't been able to figure out for sure if sucrose or fructose is the issue. I think we're going to need to get some more help from the GI specialist. I just need to get the time and energy to call and leave yet another message, and hope I get a call back this time.

At some point we are probably going to have to make decisions about what severity of symptoms justify which extreme of dietary changes. Even small amounts of blackberries cause very soft BMs full of undigested food, lots of gas, exacerbated reflux, and difficulty falling asleep. But they don't seem to make E severely miserable, and she begs pitifully for them if she sees them. So should we cut out blackberries or allow her to eat them occasionally anyway? We're going to have to start making those kinds of value judgements.

So far, it's pretty clear that most or all fruits cause symptoms, at least some vegetables cause problems, and either whole wheat or table sugar (or both) is an issue for her. But it still could be either fructose or sucrose that's the problem. I'm going to have to just feed her plain sugar to find out, I think. Even if plain table sugar causes symptoms, that could be either hereditary sucrase/isomaltase deficiency (since almost all fruits, grains and vegetables contain sucrose and/or maltose) or hereditary fructose intolerance (since HFI affects digestion of sucrose also). Or possibly something else. I hope the doctors will be willing to try to figure it out at some point instead of continually telling us that we just have to figure it out by trial and error and avoid feeding her foods that cause symptoms.

We can't really do an accurate trial without removing all fruits altogether, and I just don't know how to make that work.

The problem is that she cannot drink plain water without choking on it or having it end up in her lungs. She aspirates thin fluids. So we thicken her water. The only thickener we've found that she can tolerate and is willing to drink is tapioca starch. But even that she won't drink plain. So we add a small amount of orange juice to make it palatable.

Her reflux medicine is specially-compounded so we get the plain ranitidine powder with no additives. But since it's so bitter we mix it with about a teaspoon of black cherry juice. I don't know what else we would mix it with--I suppose we could mix it with her plain thickened water, but--wow, yuck. I'd hate to have to inflict that on her twice a day.

She is still nursing, but the doctor says that's not enough liquid to meet her needs, so she really needs to be drinking something besides breastmilk. When we've tried to switch her to thickened water with nothing added, she'll just go without drinking anything besides breastmilk for extended periods of time. Besides, even the tapioca starch itself contains fructose and sucrose. They even make high-fructose syrup out of it, similar to high fructose corn syrup.

I'm once again feeling overwhelmed and out of ideas when it comes to feeding this child.

And I'm still trying to figure out what's causing M&M's stomachaches, diarrhea and frequent leg pains, too. AJ gets symptoms too, but not nearly as frequently or as severe. I'm hoping that figuring out Baby E's issues (since her BMs, etc. are easier to monitor) will be the key for all of them. I'll definitely be trying everyone on the "safe" diet for a week or two once we figure out what Baby E can eat without causing symptoms. Meanwhile, I don't want to give M&M and AJ a complex by constantly asking them how they're feeling at the moment, so I just try to pay close attention when they volunteer information.

I washed myself!

I let Baby E play with a little trickle of water in the sink while AJ and M&M worked on their Egypt Lap Books this afternoon.

E came to me some time later, glowing: "I did it! I did it, Mommy. I washt my ands, I washt my aiwh*, I washt my pinguhs, I washt my fumb, I washt my ahms, I washt dis lil pinguh, I washed all dis! I did it ahl. I washt myfelf!!"



* hair

Into Egypt

DH and I decided that it might be a good idea to try out some of the various curriculums to see what works best for us before we commit to buying one. Most of the ones we've been looking at have a week or more of free samples available online.

The girls and I started Week 1 of the sample curriculum from Tapestry of Grace today. Yesterday after church we spent the afternoon at the library, and came home with tons of books on Egypt. I told the girls yesterday that this week we would be visiting Egypt in our imaginations.

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With guests Friday and Saturday, a birthday party Saturday, and church and the library on Sunday, I ran out of time to do much preparation. So today we basically did a bit of an overview, looking through some of the books and picking out interesting points to look at.

We reviewed oceans and continents, talked a little about the Nile river and the basic geography of Egypt, and why civilizations tended to center around water. We read a little about the culture of ancient Egypt, and briefly discussed everything from their architecture to their beliefs to how they did their shopping.

We read bits and pieces of several different books together and the girls browsed through others on their own. I had thought the books might be a bit too dry, the topics too advanced and the wealth of information a bit overwhelming for their ages. But it wasn't. They each found several books that interested them from the huge stack. M&M's favorite was a book about an Egyptian cat. AJ sat down and read straight through a book on the Nile River and Geography From A to Z on her own. Both of them also read parts from other books on Egypt, and would have kept going if I hadn't called them to dinner.

One thing we had enjoyed reading about was the barter system used for commerce in ancient Egypt, so for dinner I had a bit of a brainstorm. I gave AJ a plateful of sliced cucumber (fresh from our garden) and three butter knives, M&M three pieces of oven-friend chicken and three forks, and Baby E three little dishes of potato chips and three spoons. (We were limited on the starches and produce since we were avoiding fructose and trialing sucrose today.) The girls had to "barter" with each other to end up with a complete meal and the appropriate silverware. They loved it.

By the end of the day, the kids had learned quite a bit about Egypt. So had I. Even Baby E enjoyed looking at the books and maps.

I think we'll easily spend the planned three weeks "visiting" Egypt. I'm more worried that we won't be able to spend as much time as we'd like on each area than that we'll run out of things to study before the 3 weeks are up.

This week we'll focus mainly on the geography, the river Nile, the animals native to Egypt, and ancient Egyptian culture and daily life (being aware that this was the culture in which Moses was raised). Next week we'll learn about the Pharaoh's role as ruler, the pyramids and tombs, mummies, the Egyptian religion, Moses, and the Children of Israel. I think the third week focuses mainly on Egyptian mythology, relating it to the Ten Plagues and the Exodus.

Interwoven among all that, we'll be doing things like making salt maps to learn geography basics, doing writing assignments, studying the arts and crafts of ancient Egypt, etc. I'm not sure if we'll start math, grammar and science this week or wait until after Labor Day to do that.

Today felt more like playing and exploring than like "doing school."

M&M told her daddy, "We went to Egypt in our minds today. But right now I'm still in Egypt in my mind."

AJ said, "When I grow up, I'm going to go and live in Egypt."

We can all hardly wait to do more of our study tomorrow. We're going to start our salt maps, learn more about the Nile, and try to find or make some food that ancient Egyptians might have eaten.

Decisions

I've been feeling under the weather for almost 3 weeks now, so hopefully I'll start getting some energy back soon.

The past couple of weeks we've spent a lot of time with family--several of DH's siblings have been able to visit this summer, and it's been nice to spend time with them, his parents, and other family members. Tonight the Musical Overseas Family (one of DH's sisters, her husband and their 7 kids) is coming over for dinner. I also have Graceful Lady's daughter for 2 days (today and tomorrow) while GL runs in a marathon, so we'll have 10 extra people for dinner tonight.

Right now I just finished getting the 4, 5 and 6-year-olds down for naps/quiet time and Baby E is falling asleep in my arms while nursing.

I've been spending every spare moment researching various options for homeschooling this year.

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We had throught we'd decided on Sonlight, but now we're thinking it probably wouldn't be the best fit for our family. I like the idea of a literature-based curriculum, but I think we also need hands-on activities and some good systematic grammar training. I prefer a more classical, intentional and systematic approach to grammar rather than the more Charlotte-Mason "learn by observing good literature and pick it up largely by osmosis" approach.

Also, I think reading bits and pieces of 6 or 7 different novels every day would drive us crazy. Some of the literature selections in SL seem a bit heavy in theme or dry, or we've already read them. Some of the other curricula I'm considering are more topic-based rather than based on specific books, so it's easier to substitute a different book on the same basic topic without having to completely rewrite the schedule. Most of the curricula I like have the option to be scheduled by the week instead of by the day so that you can read the books one at a time, all at once or somewhere in between. I like that.

So far the ones that look most promising are primarily literature-based with something of a classical approach. I'm discovering that the Christian Classical approach or a classical/literature/Charlotte Mason/eclectic blend seems a better approach for my philosophy of education and our needs than a pure Charlotte Mason style. I do think some subjects, like grammar and math, need a more systematic approach, some drilling, and need to be taught concretely rather than just expecting kids to pick it up through exposure without much formal training. I'm not against textbooks as a "core" or base for the curriculum, but I do think kids learn better from stories and real books along with the textbooks. Especially my kids, who love to read (and retain things well that way). My kids also love hands-on activities, so it's important to me to include those too.

A few of the options we're researching include Winter Promise, My Father's World and Tapestry of Grace.

Tapestry of Grace looks the most interesting to me, but I'm not sure I can handle the amount of prep work this year. I'm wondering if it would be better to start it later when the kids are a bit older.

I may end up just putting together my own curriculum using the textbooks we have but adding fiction and nonfiction literature to fit with the topics we study in science and history. We plan to continue with Singapore Math, supplementing with extra drills and review, no matter what curriculum we use. We'll do some sort of formal or semi-formal grammar and writing/spelling practice. For other subjects like science and history, I like the idea of taking a somewhat systematic approach with a rough framework that moves through various topics, but mostly using "real" books rather than textbooks to learn about each topic.

I have a couple of first-grade science books I like and would probably use some chapters from each. But I don't really have a history text that covers what I'd like to have AJ study this year. We did US history last year, and I'd like to take a more worldwide or multi-culture approach this year. I know I don't want to take an approach to schooling that spends 90% of the time on US history and our own culture--we want our kids to have a big-picture view of time and a pretty good grasp of history with a worldwide perspective.

I need to look into some of the options like Biblioplan, Mystery of History and Story of the World. I just haven't had the time to study every curriculum in-depth. At some point very soon I'm just going to have to accept that I can't spend hours researching every single curriculum available, and just pick one. :)

My Father's World (although it's a bit too CM in its approach to grammar for my taste) utilizes a great idea that we'll probably use no matter what curriculum we choose. It's a "book basket" filled with books of all types that connect to the topics currently being studied. The kids can browse through them at their own pace and pick what they'd like to read at their leisure. You change the selections in the book basket every week or two, and that way the kids are reading lots of different books that connect to what they are learning in school. My kids would thrive with that sort of approach, I think.

We'd better hurry and decide if we want to order whatever curriculum we decide on and have it here in time to do planning and start by the Monday after Labor Day, as we're currently planning.

But first, I think I'll take a break and try to get a bit of a nap myself.

Confusing

Just to put another twist in things: We found some organic bananas that have not been treated with any pesticides or fertilizers and, most importantly, have not been fumigated with corn-derived gasses.

Baby E seems to be able to tolerate them just fine. She had half a banana twice yesterday, and it certainly didn't give her diarrhea.

She's also been eating pears bars fairly frequently with no obvious problems.

I'm actually wondering if, as can happen with lactose intolerance, her tolerance to fruit fluctuates with the state of her digestive system. It seems that when she's had a recent reaction, is fighting a virus, etc. she can tolerate almost no fruit at all. But when she's doing well she can digest fruit much better.

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I've been keeping really detailed records of her eating and her symptoms again for about a week now. The biggest thing I've realized is that she nurses a lot. She's still nursing at least 5 to 8 times per day, usually every 2-3 hours during the day. She does sleep through the night most nights, but otherwise she nurses almost as much as an infant does. With a few exceptions (meat, potato chips, occasional fruit, kohlrabi, yogurt and scrambled eggs) she eats only a few nibbles of whatever solid food she is offered (even if she hasn't nursed recently). She almost never eats more than a nibble of anything containing a grain--even rice, lately. Some days she doesn't eat much at all of any solid food, even her favorites. [Edit: Of course, I keep thinking that eating little nibbles of this and that is pretty typical for a 2-year-old. I may be making myself crazy trying to find patterns where none exist. :)]

She's also learned this past week how to say "My tummy hurts" (sounds more like "My ummy uhts"). It's a huge milestone for her to be able to communicate this in words reliably and on her own initiative. She says it fairly frequently--and often it's times when there's little or no other indication that she's uncomfortable. She might be a bit quieter than normal, or she may be pulling at her shirt a bit or chewing on her hand, but she's not being fussy or having diarrhea. The times she complains of her tummy hurting correlate well with the times she doesn't want to eat much of anything.

I'm glad she's becoming more able to communicate such things.

M&M complains often of her tummy hurting, too, and gets some of the same symptoms. So I wonder if part of this is some issue they share. We haven't been able to pinpoint a clear pattern for either of them, yet. I want to keep detailed records for M&M, too, but it's much more difficult for an older child who can help herself to food at family gatherings and who takes herself to the potty without help. Even though I ask her to tell me when she has diarrhea, etc. or when her tummy hurts, she doesn't necessarily remember to do so. I'm not really sure how to make the record-keeping work well for her.

AJ, we've recently realized, seems to have hypoglycemic tendencies. Her most severe emotional meltdowns almost always coincide with being hungry, and are quickly mitigated by a healthy snack.

I hope we can figure out how to best feed our kids soon.

Which Avatar?

I'm thinking of changing my avatar, but I'm not sure. What do you think? Should I keep my cute little purple kangaroo logo?



Or should I make it something like a photo of me instead? I was thinking about something like this:



Of course, in avatar size it would look more like this:



Would it be too confusing to change my avatar so drastically, do you think? I kind of like the anonymity and name recognition of the kangaroo, but the idea of something a little more personal has some appeal as well.

Sliding

Today was a great day. First we had church, then the big annual "grandkids' birthday party" at DH's parents' house, and my sister Sparrow came over this evening.

Here I am playing with my girls and some of their cousins this afternoon. I'll post more photos tomorrow.

Nuptuals

Congratulations to Elementary Schoolteacher and Family Lawyer. May you have a lifetime of rich and happy times together as you grow in wisdom, godliness and love.

Little Family

Baby E, pointing to each of her toes: "Dad, mom, baby, ohr baby, ohr baby."

Adrenaline Rush

I still have a sinus infection, but it seems to be improving. I'm feeling quite a bit better. Thanks for the comments and well-wishes.

Tonight we had a potluck gathering with DH's family at Family Tradition Falls. DH's curly-haired sister from Gateway to Oz and her husband and kids were there, along with 3 of DH's other siblings, some of their kids, and DH's parents. We rarely get to see the families from across the USA, so that was fun.

DH's dad seemed happy to be there and spoke briefly with me and others. Pretty soon, though, he ended up going back to the car to lie down.

One of DH's nieces was holding Baby E while I brought things from the car and worked on getting things set up. Gateway to Oz BIL came over to say hello to her. I greeted him as I went by.

Then out of the corner of my eye I saw BIL hand Baby E a piece of a corn chip. It didn't register for a moment, then in seeming slow motion I saw her look at the strange new food and start to move it toward her mouth.

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I made a flying leap to grab her hand, saying, "No, no, NO-no-no-no-no!"

Thankfully, I caught her arm halfway to her mouth. I took the chip and stood there holding her arm so she couldn't put her hand in her mouth, asking DH to bring me a baby wipe. Baby E started giggling at strange Mommy. I laughed with her in relief and explained to BIL that Baby E is severely allergic to corn. Poor guy, I probably gave him a heart attack too. DH brought the wipe and I cleaned E's hand as thoroughly as I could.

BIL apologized and held up some lettuce or something, saying, "Oh, well can I give her this?"

I said, "No! Please, don't feed her anything at all. She can only eat what DH or I give her."

It took a while for my heart to slow down its beating. We were probably at least an hour from the nearest hospital, and we certainly didn't want to trial something major like corn chips in that type of situation. I'll take the controlled in-office food challenge with medical care and resuscitation equipment inches away, thank you very much, even though we likely wouldn't end up needing it.

Baby E did have a reaction (albeit mild) with a slight rash and significant GI symptoms earlier this week to some Vitamin C (ascorbic acid) powder that was supposed to be (and was labeled!) corn-free, but turned out to be most likely grown on corn-derived glucose. She started getting eczema or some type of little rash on her face (which hasn't happened since her last suspected corn exposure in March) along with the diarrhea, etc. I'm not sure if the milder reaction was because it was such a small amount, because she's getting less sensitive, or because I buffered the vitamin C with baking soda (a substance that some claim can minimize or neutralize allergic reactions in the gut) to cut the acidity.

The ascorbic acid reaction was different from and more severe than the symptoms she's been getting from fructose or whatever it is that's bothering her in some other foods. At least she didn't get the facial swelling or raspy breathing/coughing this time. Of course, this was trace amounts (mostly through my milk) of a corn derivative so highly refined that it technically contained no corn.

Just to throw a wrench in things, we gave Baby E a Pear Bar at luch today with no significant symptoms. Pears are supposed to be one of the very worst foods for people with fructose intolerance, and dried fruit is supposed to be even worse than fresh fruit. One bar is the equivalent of two pears. She ate the whole thing with no apparent effects other than a BM just a bit softer than normal about an hour later.

Four blackberries, a quarter of a peach, or less than half a banana gives her diarrhea, horrible reflux, and pretty severe GI symptoms, but she can eat two entire dried pears with only very mild effects? Fresh pears seem to affect her the same way most other fruits do, but she can handle Asian pears better than Bartlett? It makes no sense.

Some days I just want to throw up my hands and say, "Okay, I give up. I can't figure it out. Just tell me the answer."

I don't have anyone to tell me the answer. So I'm back to detailed record-keeping. Hopefully something will give us a clue--or at least give a clue to someone who knows how to interpret the data, if we can find such a someone.

Fence Hopping

It was somewhere between 11 and midnight. I was getting ready for bed, exhausted and ready to sleep as soon as possible. But I kept hearing voices laughing and hooting over the sound of dice being shaken in a can.

It was our neighbors, behind and catty-corner to us. They like to sit on their back patio and play games with their guests, I guess. They weren't doing anything particularly offensive--just playing some kind of dice game, laughing and talking loudly.

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Something about the acoustics of the surrounding houses and yards seems to bounce the sound right up to our windows. With the windows open and the silence of the night, we could clearly hear conversation carried on in a normal voice if we wanted to. Even with the windows closed their laughter and shouts of gaiety pierced through our home.

Last time they had a party like this, they kept going until 3 or 4 AM, making it impossible to sleep even with the windows closed and the bathroom fan on. They even woke the kids on the other end of the house several times.

Between still trying to get over being sick, and Baby E having had a reaction today, I really didn't want to be awake all night with the neighbors' party again. I knew I probably wasn't the only one bothered. The neighbors on one side of us go to bed early and have mentioned being wakened in the wee hours of the morning by the backyard neighbors (or their dog) before. The neighbors on the other side of us have an almost one-week-old baby.

I had to do something.

I thought about telephoning, but I wasn't sure I had the right number. I'd tried calling them the day after last time. The phone had been answered by what sounded like a teenaged boy. After I explained that I was the neighbor and asked for the woman who owns the house, he stammered a bit and told me that nobody by that name lived there. I had double-checked the number several times, and called my next-door neighbor to see if she had the same number for them. She did. I was pretty sure it was the right number, but I wasn't going to risk it so late at night.

I thought about hopping in my car and driving over there. Although our yards touch at the corners, their house is on a different street from ours. It's 5 or 6 blocks to walk from one house to the other around the corners. The front door idea seemed a little odd, though. I wasn't sure they'd answer the doorbell, and somehow it didn't feel quite safe to be ringing a near-stranger's doorbell in the middle of the night and maybe getting into an altercation with someone who may be angry or drunk or something, for all I knew.

I'd tried calling to them out the window last time, "Excuse me, are you aware that it's 2 AM and people are trying to sleep?" But they hadn't seemed to hear me.

Calling the police seemed like overkill, since I hadn't even tried talking to them personally about it yet.

So I walked out into the back yard, to the corner that touched the corner of their yard. The fences are six feet tall in our neighborhood--smooth cedar panels with nothing for feet to grip. I'm 5' 2", so the top was well above my head. Since it was a corner, though, I could grab onto the tops of both fences and brace my feet on the sides.

For a moment I didn't think I'd be able to pull myself up. Then I was scaling the fence, awkwardly clambering atop the boards.

The people sitting around the backyard table looked up as I settled myself comfortably astride the fence. I wish I had a picture of their faces as they glanced up to see what must have seemed something of a ghostly apparition sitting atop the back fence in the dark.

"Hello!" I said in bright, cheery tones.

The neighbor lady looked like she might bolt or scream for a moment, but then she realized I must be just the crazy neighbor. "Uh, hi?"

"I don't know if you realize this, but we can hear you loud and clear inside our house."

"Oh? What time is it?"

"I don't know, almost midnight?" I looked at my watch. "Oh, it's 11:20. A few weeks ago we could hear you until 3 or 4 in the morning. I just wanted to let you know. My kids are trying to sleep, and the noise wakes them up."

"That was, like, a month and a half ago."

"Maybe. I don't know, 6 or 8 weeks ago? It woke the kids several times. Anyway, I thought you might want to know we could hear you quite loudly."

"Have you tried a fan? Sometimes that masks noises."

"Yes, we tried the fan."

"Do you have the windows open?"

"No, they're all closed. Something about the way the noise bounces off the courtyard or something, just makes the sound carry, I guess . . . "

"That's weird. So, we're being too loud. We're not going to be out here much longer, anyway. We're just celebrating my nephew's graduation."

"Okay, well, have fun. I hope you have a good night."

"We'll try to be quieter."

"Thanks, I really appreciate it."

"Good job getting up on the fence like that, by the way. That was impressive."

I laughed. "Thanks. I just figured you probably didn't know we could hear you so well. Thought you'd want to know."

"We'll try to be really really quiet."

"Thank you very much. Enjoy your party. Good night."

I strained my hip a bit hopping down in the dark, but it was worth it.

If I'm feeling up to it tomorrow, I might take them cookies or something to thank them for quieting down and to let them know there are no hard feelings. I really didn't want to spoil their party, but, you know, I think I'd want to know if my party was keeping the neighbors awake like that.

Floor Play

As I told DH yesterday, "Wow, I haven't been this sick in a long time."

Having the flu and then a sinus infection really has knocked me flat. I've spent most of the time sleeping or sitting around like a zombie drinking lots of water.

DH has singlehandedly been taking care of the kids, laundry, dishes, cooking etc. He's my hero.

My sole contribution has been little things like nursing Baby E, lying on the floor playing Polly Pocket with AJ and M&M, lying on the floor keeping the kids company while they fell asleep, and lying in bed throwing a ball for Baby E. :)

Mostly I've been pretty useless, both physically and mentally.

Sample conversations:

PK: "I think . . . there's still some . . . uh, um, some . . . uh, chicken in the . . . in the . . . in the . . . "

DH: "The refrigerator?"

PK: "Ughhhhh. Moan. Yeah, that."



DH: What do you want to do tonight?

PK: Huh?

DH: What are your plans for tonight; what do you want to do?

PK: Um, crash? What do you mean?

DH: Well, I was just wondering if you wanted to watch a movie, or sleep some more, or what.

PK: I don't know. Thinking hurts my head. So do noises. So does light. I think I'll go back to bed.

Today was better than yesterday, at least. I got up for a while several times. Even made breakfast for Baby E and myself and baked sugarless "cookies" (more like scones) while DH and the older kids were at church, grocery shopping and lunch. Then I ended up having to call him and ask him to hurry home because I was crashing.

Now I'm going back to bed.

Everyone else, BTW, is fine. Runny noses. DH is wearing himself out, though.

Too bad he has to go back to work tomorrow.

He's a good guy.

Whew

Baby E woke up crying sharply somewhere between 1:30 and 2 a.m. last night. She was so uncomfortable. She finally fell back asleep in my bed somewhere between 4 and 5. She's still quite fussy and uncomfortable this morning.

Her reflux was acting up badly, and she was extremely gassy and appeared to be having GI discomfort as well. She wants to nurse and nurse. I'm sure it must be soothing to her throat and digestive system. She cried and cried when I finally made her stop nursing this morning after about an hour on both sides.

Can we say tired? Besides the fact that I now appear to have a sinus infection.

I'm so glad it's Saturday so I can hand her off to DH and go back to bed.

Head Spinning

Just a couple of notes to add to my last post, and an error to fix:

Hereditary fructose intolerance (HFI) probably has an incidence of somewhere between 1 in 10,000 and 1 in 100,000. It's very, very rare. Since fructose malabsorption is found in about 3 out of every 10 people, or close to 30%, it's a much more likely culprit.

I'm still trying to figure all this out. I don't really understand it very well yet, but I'm finding a lot of conflicting information about what foods are and aren't problematic for people with fructose intolerance or fructose malabsorption.

She may not even have this problem at all, but I'm trying to learn about it so I know what questions to ask the doctor.

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I can't conclusively rule out sucrose intolerance at this point with what little I know about the various conditions, either.

Apparently there are at least 5 different variations of Congenital Sucrose-Isomaltose Deficiency, 3 distinct types of inheritable fructose intolerance, and nearly infinite variability in sensitivity with Fructose Malabsorption. (Fructose Malabsorption can range from asymptomatic to quite severe, and can require varying degrees of dietary adjustment from almost no restriction to as restricted as the HFI diet.)

There are other types of sugar malabsorptions, too. Sorbitol malabsorption alone doesn't fit, although it goes along with some of the previously-mentioned types of sugar intolerance. At least I don't think we have to worry about whether it might be glucose intolerance--she doesn't have any signs or symptoms of diabetes.

According to this article, "Reducing sugars include lactose, glucose, fructose, and galactose but not sucrose." So apparently any of those sugars could have caused the fecal reducing substances tests to come back positive.

I'm a bit overwhelmed and feel like my head is spinning at the moment, between still trying to get over the flu and taking in the information overload from reading about every type of sugar intolerance I can find information about.

At this point we're waiting for calls back from the pediatrician and the GI specialist to see where to go next. Meanwhile, we're trying to trial foods one at a time to see whether Baby E can tolerate them, and how much of them she can tolerate.

I allowed her to eat two blackberries tonight, and she had no obvious symptoms. I'll probably let her eat three tomorrow and see what happens. Some of the things, like honey, we've never really trialed alone, so we don't really know if it's that or another food being consumed at the same time that's giving her symptoms.

There are a lot of confusing things right now. For instance, I'm going through charts of the sugar content of foods. I'm looking at the ones we know give Baby E issues, and trying to figure out if there's a common thread between them. So far I'm not finding one. For instance, bananas should be one of the fruits least likely to cause issues with fructose malabsorption, and yet they cause noticeable symptoms for E within an hour or so of eating a relatively small amount--more so than we've noticed with some other fruits that "should" cause more issues.

I don't think this is something we'll be able to figure out by ourselves, so I'm really praying that the doctors will have a lot of wisdom.

We are likely dealing with at least 3 different issues here:

First, the allergies or severe intolerances which cause the rash/itching/swelling type of symptoms and which affect E. These cause her symptoms through my milk even if I eat them and she doesn't. Most likely this is just corn and soy, and it is possible she has outgrown these or may in the future.

Then there is the sugar malabsorption issue, which is completely separate. That should not cause symptoms through breastmilk, so at least for that one we only have to worry about what she is directly eating. Depending on the type of intolerance she has, this may also include starches and other types of foods.

Thirdly, we have to consider the possibility that there may be some other kind of intolerance, such as an individual intolerance to bananas that's separate from the sugar issue.

If that's not confusing enough, there are plenty of other things that could be complicating things as well, such as her reflux and the fact that she's a two year old who gets grumpy, fussy and sick sometimes just like any other two-year-old.

The good news is that, whatever the issues are, she is a healthy, thriving child who just happens to have frequent mild-to-moderate unpleasant GI and allergy-like symptoms. She is gaining weight, developing normally, and is generally healthy and happy.

We just need to figure out how to help her be the healthiest she can be, and try to keep from feeding her too much of anything her body doesn't process well.

But right now, I need sleep.

Fructose Malabsorption

The disconnected puzzle pieces may finally be starting to fall into place.

It seems fairly well-established now that Baby E is, in fact, definitely not lactose intolerant. She tolerates breastmilk, yogurt, and whole cow's milk just fine.

But we know from her symptoms and from the positive reducing substances tests that she malabsorbs some kind of sugar. Ruling out lactose as the problem sugar set me to researching again.

Sucrose intolerance or congenital sucrase-isomaltase deficiency doesn't seem to fit.

What does seem to fit--so far nearly flawlessly--is fructose intolerance. Yes, fructose. Apparently being able to tolerate orange juice, white grape juice and organic strawberries doesn't rule out fructose intolerance. Fructose absorption (in the non-hereditary form of intolerance) is affected by glucose levels, not just fructose levels alone. Oranges, white grapes and strawberries are less likely to cause problems for a fructose malabsorbing person because they have a good balance of fructose and glucose.

Also, now that we know better what to look for we're realizing that "tolerate" is all relative. It's hard for a baby to tell us whether she's experiencing stomach pain or intestinal cramping--especially if she's experienced those feelings almost constantly for most of her life.

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Almost all of the foods we know she has issues with (including corn, soy and other legumes) are problematic for people with fructose intolerance.

So many of the symptoms that have seemed chronic or random suddenly make sense now. Also, many of the issues we thought were the result of trace amounts of corn derivatives could have been caused by fructose instead.

Almost every single time Baby E has had a non-rash food reaction, we can correlate it to consumption of fructose or fructans (chains of fructose molecules found in certain vegetables and grains, such as artichokes and whole wheat).

All those "healthy" foods I was making with honey in them would be problematic if fructose is really the issue--honey is worse from a fructose perspective than cane sugar. So are agave nectar, grade B maple syrup, and all those other "healthy" unrefined sugars that I could never figure out why E didn't seem to tolerate all that well.

Most of the times we've been at gatherings and I thought she was reacting to trace amounts of food others were eating, I'd brought along some kind of "safe" treat for her--usually fruit or something with honey in it.

Every time we've tried whole wheat bread with regular yeast, she hasn't seemed to tolerate it well. She does much better with unsweetened sourdough bread. But it may not have been an issue of the yeast being grown on corn after all. Whole wheat contains fructose, and the yeasted bread had a small amount of honey in it. Sourdough culturing breaks down the sugars and the fructans in the grains.

E digests unenriched white rice better than brown rice, and brown rice better than wild rice. White rice has the least fructose/fructan content of the three.

Remember the probiotics that made her so miserable, that contained FOS? FOS and inulin are fructans.

The weekend we went to the coast with Malamute Rescuing family, Baby E did great at first, but got increasingly miserable throughout the weekend. We were eating a lot of fruit and artichokes while we were there. Artichokes are high in fructans.

On our last trip, Baby E kept getting increasingly uncomfortable. We were eating quite a bit of zucchini brownies that I'd made to take along as a treat. They were sweetened with honey. Zucchini is rather high in fructose also, for a green vegetable.

Now that we understand how to watch fructose and are avoiding it most of the time, we can finally see a pattern. A quarter of a pear, banana or plum gives her stomach cramping and a very soft BM within an hour or so. Her reflux gets worse, she gets a bit grumpy, and has trouble falling asleep for naps. 4 blackberries resulted in the same symptoms yesterday.

We thought she tolerated grapes well, but when we tried them this week after 24 hours off fructose, she got fussy/sleepless/gassy/diarrhea for the rest of the afternoon with some red and purple grapes. We still need to trial white grapes to see if she can tolerate them better.

We're probably going to have to do some more testing to verify this, and to make sure what she has is fructose malabsorption (a.k.a. dietary fructose intolerance) as opposed to the much more rare, severe and limiting hereditary fructose intolerance.

With hereditary fructose intolerance she would have to pretty much completely avoid all fructose and sucrose of any kind, which would mean essentially all fruits and vegetables, legumes and whole grains--as one sufferer put it, "pretty much anything that grows out of the ground". The only kinds of sugar she could have at all would be glucose (dextrose) and lactose. We would probably have to worry about cross-contamination and trace amounts of sugars in her food and medications.

But with E's symptoms and history, I think dietary fructose intolerance (fructose malabsorption) is much more likely than hereditary fructose intolerance. HFI is extremely rare--somewhere between 1 in 10,000 and 1 in 100,000, while 1 in 3 have some level of FM (many people have it so mildly they never know it, or just get diagnosed with something like IBS--I've known my own IBS was at least partially sugar-related for some time now).

Baby E's fructose malabsorption seems to be fairly severe (4 blackberries?!), but it does (at least in my internet-educated opinion) seem to be malabsorption rather than the more serious form.

With fructose malabsorption, we'd just have to figure out her tolerance level in order to find out which foods she can tolerate. She may be able to tolerate things with a good balance of fructose and glucose (like cane sugar, white grapes and oranges) just fine, or in moderation. The good thing about FructMal is that we probably don't have to worry about trace amounts of foods--just what she's actually ingesting.

Either way, it's most likely not something she'll grow out of. And her diet will probably be very limited and complicated, especially if she continues to have issues with even fructose-free corn and soy products. But we specialize in limited and complicated here at the Kangaroo Cottage, right? :)

Interestingly enough, from what I've been reading the very safest foods for people with fructose issues are meat, peeled white potatoes, and (for those that can tolerate lactose) plain dairy products.

Baby E's favorite foods have always been meat of all kinds, potato chips and plain unsweetened yogurt.

Review of the Weekend

DH was well enough to go to work today, and I am feeling somewhat better also. I started getting sick Sunday night, so I really hope I'll be well enough to go to a friend's wedding shower by Saturday.

Last weekend was very full. I don't have the energy to write anything really creatively descriptive about it, so this post will be mostly photos. I've made them a bit smaller so the page will load faster, but you can click on them to enlarge. (For those who are getting posts via e-mail, drop me a note if you would like enlarged versions of any photos.)

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On Saturday the kids and I went to the rose gardens with Dr. A the pediatric endocrinologist while DH went to a movie with a friend (miraclebaby's DH). We had a lot of fun wandering around and taking pictures of the flowers. The girls enjoyed smelling the flowers, hiding behind the rose bushes, and collecting petals and rocks.







In the evening, we all met up at DH's parents' house for a family picnic with DH's sister and her family, who are home from overseas for the summer. Dr. A came along, and it was fun to be able to introduce her to some of DH's family (albeit a very small segment).

Here's a photo of Baby E giving "Mamaw" a hug and thanking her for a birthday gift:



The girls, as always, had a wonderful time playing with their cousins.





The kids' cousin W broke her leg earlier in the summer, so the kids had to find ways to play with her while she sat in a chair. Here she is pretending to "fish."



Those sticks made for some fun (and carefully-supervised) "sword fights." It was cute to see Baby E brandishing her "sword" and shouting "I dot chew! I dot chew!"



On Sunday we had a special service at church, of which DH was a significant part. Then in the afternoon my parents and sisters came over to celebrate Baby E's birthday.







In the evening we went to DH's parents' church to hear his sister's family talk and sing. Morning came along, which was nice. We really enjoyed the service. DH's sister, BIL and their 7 children sang some beautiful choral arrangements in multi-part harmony. I really wish they would record a CD so I could hear their music even when they're not in town.

DH's dad had spent the family gathering sitting huddled in a blanket hardly speaking and seeming very tired until he went in early to bed. But he perked up significantly on Sunday. He played the piano for both the morning and evening church service, had the energy to interact with people, and spoke in a more strong and energetic voice than I've heard from him for a long time. What a blessing to see him feeling so much better. I hope he continues to improve.

Wordless Wednesday: While the Dew is Still on the Roses

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[Click to see more photos]

Summer Flu?

We're sick with what at first seemed to be just a bad cold. Now DH and I both seem to have the flu, complete with all-over body aches, headaches, fevers, coughs & sneezing, stuffy heads, runny noses and severe fatigue. We can hardly drag ourselves around.

The kids, on the other hand, are barely sick (M&M not at all) and full of energy. Baby E is wanting to play and nurse and climb on me a lot, which is very draining.

It's too bad DH and I had to both get sick at once, but at least we can sort of spell each other. Right now we're hoping to get the kids to bed ASAP so we can go to bed too.

Two

Baby E is two years old today. Guess what we did to celebrate?

We went to the county fair.



"Wheeee! Wook, Eeen! Wook-a me! I widing howse! Wheeee!"



On being asked, "How did you like your first roller coaster ride?"

M&M, sparkling and glowing--huge grin: "I loved it! It was fabulous!"

AJ, deadpan, unsmiling: "Great."

She did smile for the miniature train, though.

Baby E was too small for any of the rides and was so very upset that she wasn't allowed to ride the merry-go-round when AJ and M&M did. Toward the end of the day we found the pony rides. She was so thrilled to get to ride a real horse.

I thought it was rather ironic that the proprieter refused to allow E on the merry-go-round--even sitting on a stationery bench instead of an animal, with me holding her. I've never seen a merry-go-round with such strict rules before. Yet the ride with real horses let her on, no problem. It seems that riding on a real horse would carry more of a risk than sitting on a bench in Mommy's arms, doesn't it?

The proprieter of the pirate bounce-and-slide in another part of the fair let E get on that, too, even though technically she was too short. All three girls bounced and giggled, shrieking with laughter when they fell down. Baby E was almost frenetic with joy at finally getting to go on a ride with the big kids. She jumped and jumped, fell down giggling, shouted "Wook! Wook-a me! I jumping! I jump! I fall down! Wook, I jumping!" and didn't want to get out. AJ and M&M tried to coax her, but eventually I had to go in and retrieve her--so I got to go down the big slide, too.



Baby E especially loved the "Mammas" and these baby alpacas. She got over her fear of animals and, for the first time, wanted to pet them on her own. We petted pigs, goats, cows, sheep, dogs, cats, a rabbit, a hen and more. The kids wanted to take them all home.

DH got permission to go in to work late this morning, and came with us for a little while. He got to see the kids finding their artwork displayed and enjoying some of the animals.

Later, Morning came and joined us for the rest of the day. We had so much fun seeing all the exhibits. We even found something from a food vendor that Baby E and I could eat--a plain baked potato, garnished with chicken we brought from home. AJ had corn on the cob and M&M had a corndog, and they both had snowcones, shared a milkshake and had some of Morning's popcorn (spread out over the day, not all at once). They were beside themselves with all the corny treats, and quite willing to wash their hands carefully before touching Baby E.

E napped in the stroller and the older girls didn't tire of the fun. So we stayed longer than we had initially planned. We wandered around, relaxed, delighted ourselves with all the sights and sounds, and enjoyed each others' company.

By the time we looked at many of the exhibits, played games, thoroughly exhausted the kids' area (complete with huge bubble wands, painting, a ball machine, and all kinds of exploratory and educational exhibits), and took in a kids' show, it was getting late. When we got home it was past their bedtime and all three girls went to sleep quickly once they were bathed and in their pajamas.

It was one of those thoroughly happy days that I wish I could duplicate and bottle to keep forever. Since I can't, I'm just quietly savoring it and thanking God for my loved ones and for the joy-filled day.

Home from the Allergist

Well, we saw the allergist. Baby E had skin-prick testing done for all the foods she previously tested positive for, plus coconut and chocolate.

All the tests were negative. The only one that was bigger than the negative at all was coconut, and it was a difference of 1mm--not enough to be considered a positive by any standard.

As the nurse said, "Maybe avoiding those foods for all this time has given her a chance to grow out of the allergies." As the doctor said, "It does seem pretty clear that at least some of her symptoms were food-related, but probably not all of them were. Some of those foods may never have been true allergies in the first place. Others, she's probably growing out of."

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It certainly seems to me, and the allergist agreed, that E's issues with apples, bananas and a number of other fruits seem to be more related to whatever sugar she's malabsorbing, than to allergy.

Since her reaction to bananas consisted of only one especially soft stool, with no other real symptoms, we've been continuing to give her banana in small amounts. Each time she has an unusually soft BM shortly after (usually within an hour or two), and possibly some mild stomach discomfort, but nothing severe.

The allergist thought our plan was sensible: basically, we're going to continue to limit fruits (at least the ones that seem to bother her) and try not to overdose on them, but we're not going to avoid them completely. We'll allow E to have moderate amounts while trying to keep from letting her eat enough to make her miserable. I also plan to check in with the GI specialist on that issue, and see what she says.

As for the other foods, we're going to continue introducing one per week, more or less. The allergist said that we may or may not find that she can tolerate them all now, so if she has problems with one just remove it from her diet again and try again in 3 months or so.

At first, it felt like the allergist was assuming that I was overreacting and planning to withhold foods for the rest of Baby E's life if she looked a bit off after eating it once. But I was able to explain that I don't really consider it a conclusive reaction to a specific food unless essentially the same thing happens after eating the same food on about three different occasions, and that I don't consider it a significant reaction unless there are multiple symptoms (i.e. I don't consider it a big deal if she gets just red cheeks or just diarrhea). We've tried most things at least 3 or 4 times before deciding that the symptoms we were seeing could fairly conclusively be attributed to that particular trigger. And then like to test it again after a period of time avoiding the food.

I try to keep detailed records of what she's eaten and what's going on surrounding Baby E's rashes or bad spells, but I do try to not assume causality unless it's warranted.

When he finally understood the approach we were taking, the allergist visibly relaxed. He said that seemed very sensible.

Regarding corn, at first he suggested that we start with trialing some of the more refined corn derivatives. But I asked about doing an in-office challenge. Corn is the only food I'm really worried about the possibility of a severe reaction, and that was part of the reason. But if she really could tolerate corn, I'd like to know. Also, if she did have a reaction to whole corn, it would be extremely helpful to know the severity of the reaction in a controlled environment.

After we discussed it a bit, the allergist said he thought it seemed quite reasonable to do an in-office challenge for corn. He suggested that we trial all the other foods first, since corn is the most severe. Then, in a month or so, we'll schedule a full morning to go in and do the challenge.

He said he'd never done an in-office challenge for corn before, but he'll use the same procedure he generally uses for challenging peanut.

We'll bring in corn in several different forms--fresh corn, corn chips, and something like cornbread or polenta. They'll start by rubbing it on her arm, then her cheek. Then they'll have her take some in her mouth and spit it out, or just lick it. Then we'll start giving her tiny amounts, gradually increasing the amounts over the course of several hours until either she has a reaction or she reaches a normal serving size without reaction. The whole time, they'll be monitoring her blood pressure, pulse, breathing, skin, etc.

I tried to maintain a very calm, factual, professional demeanor during the visit, and I think that helped a lot. He seems to be finally getting past his initial perception of me as a somewhat hysterical, paranoid, overreacting mom. Never, never cry during a doctor's appointment. I'm just saying. It could take the doctor a long time to start taking you seriously again once you start bawling.

He did suggest again that I consider weaning--well, more like encouraged me that I've "already nursed longer than most women ever would" and that it's okay if I feel like I want to wean Baby E. That she'd be fine if I weaned her, and it's a lot for me to manage, trying to nurse her and avoid allergens for her sake, and, and . . .

I just smiled and told him that if I felt I needed or wanted to wean her, or she wanted to wean herself, I would feel free to do so.

In compiling records in preparation for the allergist visit, I was struck with how often on this roller coaster there hasn't been any clear cause for Baby E's difficult spells, or even her rashes. I always rack my brain trying to make connections or guess what caused it, but much of the time there is just no answer. With some foods the reaction has seemed consistent and clear, but other reactions seem to have no easily-discernable trigger. Of course, even when it's clear that a certain food is triggering a symptom, we could be seeing a sugar malabsorption issue rather than an allergy issue. Or a certain food might exacerbate her reflux.

But I'm increasingly aware that--even when the timing seems to suggest it--things often may not be food-related at all. Sometimes it could be that she's ill or teething. Or it could be that her reflux is acting up, which could be food-related or not. Or she could be hungry, tired or frustrated. Some of the rashes, too, could be caused by a variety of triggers--illness, contact with an irritant, etc.

The allergist did point out today that eczema tends to be worse in the winter than in the summer, so the fact that it's so much better now could have as much to do with changes in the weather as with dietary changes. Whatever the cause, Baby E hasn't had a rash since March. Almost all the symptoms we've seen in the last 6 months could be attributed to anything from reflux to illness, with the combination of just being a toddler. Most importantly, the symptoms are much milder and less frequent now than they were before. Baby E is happy and healthy most of the time. She's thriving.

She's definitely doing ever so much better. Is it because she's growing out of many of her issues? Is it that we've gotten good treatment for her reflux and aspiration issues? Has her body been able to heal itself on a diet of safe, healthy food? Is she just doing better because we've gotten so good at avoiding the things that trigger her symptoms? Or is she doing better for some other reason?

Anyway, I'm looking forward to seeing how the upcoming food trials go. We'll be introducing mushrooms, kidney beans and other types of legumes (she already seems to do fine with green beans and lentils), soy, coconut and then the in-office challenge for corn. The allergist recommends that we avoid nuts/peanuts and fish/shellfish for another year.

Our list of foods to avoid is getting shorter and shorter!

Tired

I've been staying up far too late recently, between Baby E having difficulty going to sleep and my renewed determination to try to keep up on the housework. Baby E has slept through the night the last two nights, finally.

Tonight I'm trying to compile information to take to the allergist in the morning. I really hope I won't be too tired to be coherent.

One thing's for sure . . . we've come a long way.