Sunday, December 31, 2006

Keen Dat!

I really enjoy watching my kids interact with life.

On Friday night my two sisters came over to visit while DH and Dad were at the basketball game. At AJ's suggestion, we all worked on the 750-piece puzzle AJ had given me for my birthday. Both of the older girls did great with the difficult puzzle, happily working until they found pieces that fit.

Baby E, of course, wanted to "help" too. She was just tall enough to reach the pieces on the table, so that made it difficult to keep her from grabbing handfuls of the puzzle.

A couple of times she grabbed a puzzle piece off the table and made a beeline for the trash. Throwing things away is one of her favorite pastimes at the moment. Thankfully she usually throws them in the recycling instead of the garbage, so DH finds the sippy cups, toys and socks I miss when he sorts it for pickup.

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I really enjoyed spending time with my sisters. Putting a puzzle together is the perfect activity for snacking and chatting.

Sis J has decided to stay in town this semester so she can work on getting stronger and trying to figure out what's going on with her health. It will be nice to have her less than 15 minutes away again (at my parents' house) instead of being clear across the country.

Every time Sister Sparrow comes over, she teaches us some sign language. Last time it was the sign for "please." This time she taught Baby E how to sign "shoe" by bumping the sides of her fists together.

Baby E was delighted, and went around the house finding all the shoes so she could bring them to us and say "shoooo" while knocking her little fists together. The next morning she woke up still talking about shoes.

She's talking about everything these days. She says, "Hey, guys" when she wants to get the older girls' attention, and she calls DH and me "Dad" and "Mom." No "Mommy" and "Daddy" for her--that's for babies!

While I was cooking lunch today, she came over to me and said, "diddle-diddle-diddle" while she giggled and tickled me (quite effectively, I might add) with both hands.

Her favorite word is "yeah," which she says often and with enthusiasm in answer to various questions like "Do you want some kohlrabi?" (She's eating a ton lately, and devours just about anything we give her. Several weeks with no severe food reactions have made her much more adventurous in her eating.)

Another favorite word is "stop," which she says "dop." A few moments ago when I started to lay her down for a nap she started crying and said, "Dop. Dop dat! Doll. Naaah, dat doll. Yeah. Milk." She wanted her doll (that doll, not the other one!) and some milk before her nap.

Her doll is very important to her. Last night when we told her it was time for bed, she went running out into the middle of the family room yelling, "Oh, noooo!" She waved her arms around and shrieked for a few minutes, jabbering wildly and looking around. Then she said, "Doll!"

She didn't know where her doll was, and of course she couldn't go to bed without it. What a catastrophe! DH helped her find it and then she went to bed with little protest.

Baby E watches intently everything we do, and tries to copy it. She has become grand tantrum central lately, mainly because she wants to do things we won't let her do, but that she's sure she knows how to do properly.

She wants to climb up and put things into the toaster, open the refrigerator to take out food and put it in a bowl, grab a potholder out of the drawer and use it to open the oven, scale a chair to type on the computer, and climb up the cupboard to turn on the sound system and the TV. I hope I can figure out how to redirect that keen observation and consummate ability to copy what she sees into safer pursuits.

Baby E spends a lot of time taking the plastic dishes out of the cupboard and setting them around the perimiter of the table, taking glasses to the refrigerator dispenser to try to fill them with water, pretending to feed her dolls out of the dishes, and then putting them all back into the cupboard.

Order and rightness are very important to her, like her sister AJ. When she has a diaper change or uses the potty (which she's doing frequently), it has become increasingly urgent in her mind that I wash her bottom and her hands thoroughly. If I don't do it right, she wants me to do it again and will cry and say "Dop! Ipe!" or "Dop! Keen!" when I try to put her diaper on. She thinks she should really have a bath after each time, but will settle for thorough washing of her bottom, hands and often face.

She loves washing things. The other day she managed to get into the bathroom unattended, and I found her vigorously scrubbing the toilet with a piece of tissue. She'll wash herself, other people, the floor, and just about any other surface with any rag or tissue she can grab. Yesterday she was "sweeping" the floor with a lambswool duster.

I can certainly put that cleaning talent to good use around here; last week a friend looked around my kitchen and then asked me where I kept the broom--or if I even knew that I owned one.

Baby E will be 17 months old in a few days. She's almost a year and a half old already. Wow.

As the year comes to an end, I'm planning to post about each one of the girls individually. I have some really cute, funny and touching things to post about AJ and M&M soon. These kinds of posts are always fun to write.


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Saturday, December 30, 2006

Anaphylaxis underdiagnosed

A woman I know from an online allergy forum recently had a severe anaphylactic reaction involving a loss of consciousness and a drop in blood pressure, vomiting, and systemic changes in skin color, among other symptoms.

When she fainted, she fell hard enough to break the toilet. She awoke to find herself lying in a pool of water, unable to get up or help herself. She could have died if her husband had not come home a few minutes later and called 9-1-1.

The EMTs and then the emergency room doctors kept insisting that what she was experiencing could not be an allergic reaction, despite the patient's medical alert bracelet identifying her allergies and her protestations that she was certain she was experiencing an allergic reaction. Even though she told them the location of her epi-pen, they did not administer it.

When she got to the hospital the ER personnel kept telling her that passing out was not a symptom of anaphylaxis.

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The patient did not have hives, swelling or airway restriction (her unconsciousness and weakness was from the drop in blood pressure), so she did not fit the doctors' preconceptions about what a severe allergic reaction looks like. They thought her vomiting might be a sign of internal injuries from hitting the toilet when she fell, so concentrated their energy on checking for that.

They had trouble with the IV and other needle-sticks because of her collapsed veins and low blood pressure. The woman theorizes that it was the pain from all the tortuous needle sticks that got her own body pumping enough epinephrine to begin to stabilize her.

It took more than two hours before she was finally given epinephrine and antihistamines, or treated in any way for an allergic reaction.

As she said,


This was not a good outcome over all. Epinephrine should have been administered immediately. My husband and everyone else were so obsessed with the toilet tank and fall - thinking internal injuries - that they didn't give me epinephrine. They don't want to hear that I would have been dead from the allergic reaction before the internal injuries would have been found.
She did not have internal injuries, and recovered after finally being treated for the allergic reaction.

Unfortunately, this type of scenario is all too common. According to studies such as this one, anaphylaxis is grossly underdiagnosed. Even when anaphylaxis is correctly diagnosed, epinephrine and other lifesaving measures go unused in far too many cases.

Incidentally, the woman is allergic to corn. The item that triggered the reaction? An application of Monistat. Allergens can lurk in the most unsuspected places.

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Friday, December 29, 2006

Another Day

I was feeling a bit better yesterday. Not so good again today, but better than earlier in the week.

Still, I had enough emotional energy, finally, to jump back into the fray. That meant making phone calls to various doctors and allergists, e-mailing companies about ingredients, etc.

Of course, that means I didn't get much done other than that. It takes every bit of my full time and energy just to take care of the kids, meals and basic household tasks. Any time I spend doing other things like calling doctors means that other things don't get done, but it all has to happen somehow.

Last week I called our allergist, Dr. D, as sort of an experiment. I thought that maybe if I gave him one more chance and worked hard at informing him and explaining things, he wouldn't be so inclined to brush us off.

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I told the nurse about the reaction Baby E had to the mask or anesthetic during her endoscopy three weeks ago. I asked if there was any way to test, or if the allergist had any ideas about how to find out whether it was the mask or the anesthetic she was reacting to.

I described the reaction in detail (a bright red rash with raised bumps on her cheeks and around the circle where the mask would have been, possible rash on her tummy, welts moving into her eye area the next day, swelling of the face and tongue, possible respiratory involvement, symptoms lasting for days [the welts under her eye still haven't completely disappeared 3 weeks later], etc.).

I explained that both the doctor and the anesthesiologist said they'd never seen anything like it before, and pointed out that it was possible the mask was treated with some kind of oil or film, but that post-marketing reports also show reactions including rash and swelling (including topical contact reactions) to sevoflurane.

The nurse called back later and told me that [wait for it] the allergist thought it was unlikely that what Baby E experienced was actually an allergic reaction. More likely it was just marks on her face from the pressure of the mask, since it was probably "so tight on her face for such a long time" (all of 10 minutes).

I think that's highly unlikely, since both the anesthesiologist and the doctor were so adamant that (a) this was a highly unusual occurrence, and not a normal or common side-effect of any part of the procedure, and (b) the mask was so soft and on her face for such a short time that it shouldn't have caused long-lasting redness or any swelling at all.

If Baby E does develop swelling and a severe rash lasting for days just from short-lived gentle pressure on her face, then that would seem like it might need to be looked at further anyway.

However, I don't think that's the case with this. Her skin does mark easily, but it is a smooth, light and very short-lived redness in the exact shape of whatever touched her. It is certainly not bumpy like an allergic rash and it does not spread to areas beyond where the object was touching.

Speaking of the GI clinic, I'm a bit frustrated with that too. It's been 3 weeks since her procedure and the stool tests. I was told to follow up with the nurse practitioner after the procedure, and that she would want to see Baby E again at that point. They also said they would let me know when the test results came back.

I've been calling a few times a week for 3 weeks now and still haven't heard a thing.

I called again today. I also called around to the various allergists in the area trying to find out if there's anyone who is knowledgeable and experienced at dealing with young children with multiple food allergies and somewhat atypical reactions.

My options are very limited. Most allergists in the area don't work with kids as young as Baby E at all. There was basically only one in this state or the next state that I could find who works with young kids, other than the two practices we've already tried.

From talking to the nurse, that allergist, like most others I've talked with, seems to test and run. The nurse actually said he doesn't "work with" allergies or with patients, he just tests for allergies and that's all he really does when it comes to food allergies. There are no shots or desensitization treatments, so all they can do is diagnose.

I told her I was hoping for someone who would at least give us some advice about how to cope with the allergy, be willing to help us figure out what medications are free of her allergens (or at least be willing to prescribe them if I do the legwork and figure it out), give some guidance in figuring out what she might be reacting to, help us with challenging foods she has tested positive to but we aren't sure she's allergic to (i.e. apples), etc.

Is that too much to ask?

I even checked with Dr. D's office to see if there was another allergist in that group that might be better at dealing with non-athsma patients, but no luck there.

It looks like we'll be going back to Dr. "nobody is allergic to rice" or someone else in her practice. I'll call them on Monday, I guess . . . they're closed Friday afternoons.

I have a chiropractor appointment early this evening. DH will watch the kids during that and then is taking off as soon as I get home to go to a basketball game with my dad. I think the kids and I will eat dinner a bit early and then hopefully everyone will go to bed early or at least on time.

I know I'm going to be quite sore after the adjustment, as much as my back and shoulder have been bothering me and as miserable as I was after the adjustment last week. Hopefully I'll be able to go to bed soon.

Baby E still isn't feeling well. She seems under the weather and has a rash on her cheeks and diaper area, but at least the diarrhea is less runny if not less frequent. She was at a level orange for most of the day, fussign unless I was either nursing her or holding her and working very hard at entertaining her.

I've wondered if it could be a die-off reaction from the nystatin and yeast-treating diet, but I don't think that would cause a rash on her cheeks. She seems to be having a low-grade allergic reaction to something. I wish I knew what it was.

Last night Baby E didn't go to sleep until midnight. DH got home from dinner out with his family right about then (he'd gone straight there from work), and we ended up staying up until 3 a.m. talking. Shortly after that Baby E ended up coming into our bed and sleeping restlessly for the rest of the (short) night.

Since Baby E took a very short, early nap today it's felt like bedtime since about 1:30 in the afternoon. :)

DH's dad is slowly making progress. He can manage small amounts of walking and even go up steps now. His knee is still hurting him a lot. Hopefully he'll be well enough to move out of the nursing care center and start the steroid therapy in a couple of weeks.

My mom is still sick and now has a cold/cough again. Her test results are getting quite worrisome again, too and showing signs of problems with her kidneys and some other things.

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Thursday, December 28, 2006

Cuteness

AJ's drawing of the park

After breakfast this morning, AJ asked, "Mom, could I please have some pure white paper so I can draw lots of beautiful pictures for everyone?"

She entertained herself quite happily that way for most of the morning. The picture above is of AJ and M&M at the park. I love the "beautiful snow-capped mountains in the distance."

Meanwhile, M&M read aloud to herself and/or Baby E from a book of short stories we got at the library Tuesday night. In two days, she read straight through all nine stories, from "The Poky Little Puppy" to "How the Turtle Got Its Shell."

It is really cute hearing a 4-year-old do all the different voices in "Goldilocks and the Three Bears" and explain the pictures to her baby sister.

Baby E was in a good mood despite her poor sleep and tummyache last night, and diarrhea today. I still haven't figured out whether it's the teething, an illness, or something she ate causing the tummy trouble.

As I was taking my medicine this morning, she told me "dood dob!" and clapped for me. Tonight she started wiggling in her chair to the music playing in the background, grinned at me, and said, "I datze." [Translation: I dance.]

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Later, she headed downstairs and I said, "Where are you going?" and she said, "Di doll." I said, "You're going to find your doll? Where is it?" She looked at me like I was being silly and pointed as she surfed on her tummy down the steps, "Down decks."

She's been asking to use the potty a lot lately, shaking her little fist and saying "otty!" I bought training pants for her today . . . we'll see how soon we end up actually using them.

All in all, it was a fairly peaceful day. I was able to get a few chores done and prepare lunch without too much trouble.

This afternoon I really needed to go pick up Baby E's prescription, but I was worried that if I waited until after nap time I would be starting dinner late. I really have to start cooking a meal 2 to 3 hours before we want to eat it now.

Luckily, our babysitter happened to be available. So I had her come over for an hour to sit with the kids. Even though it was only an hour and I just got the prescription and a few groceries, it was really nice to be out of the house--and by myself, too!

I can't remember the last time I left the house for something that wasn't absolutely necessary, and even necessary errands can feel like a mini-vacation these days. Just that little break helped my mood considerably.

The two older girls didn't get to bed quite as early as I'd hoped, but they were settled down to go to sleep by 8:00.

Baby E and I just finished sharing a smoothie made with strawberry and grapefruit--not unlike a non-alcoholic strawberry margarita in flavor. She didn't like it much--too tangy or too cold--but I did. Mmmm.

She and I will both be going to bed soon. I was going to try to make some kind of crackers or snacky-crunchy thing tonight, but I think that will have to wait.

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Year-end Meme

The kids are already in fine form this morning. A spate of holiday late nights out with Daddy does have certain residual effects of the grumpy-whiny variety. Baby E is cutting four molars and four eyeteeth. Fun times!

I put the kids to bed on time last night with DH away, but I don't think just "on time" is going to do the trick. Since the Wonderful Fun Daddy is planning to be gone again tonight and tomorrow evening, I foresee very early bedtimes for the kiddos.

In lieu of a real post, this is an interesting little meme I've seen going around (I think I saw it first at MysteryMommy).

What follows is the first line from the first post of each month for the year 2006.

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January: Happy New Year, everyone! We didn't end up going to bed early tonight. Baby E is still up, so we are too. :)

February: Baby E will be 6 months old on Friday. She is a delight to have around. I'm enjoying all three of my kids so much, and I love being a mom.

March: Just a quick note as it's 1:30 a.m. here, but 3:30 a.m. in the time zone we're now used to. We just got home from the airport after 10 days in Mexico. We ended up getting quite sick a few days into the trip (and most of us are still sick), so I didn't do any journaling.

April: A friend called me this evening to tell me about her teenaged sister who is very sick with an influenza virus that's going around this season.

May: Phantom Scribbler has a post up about answering the door to strangers. I probably shouldn't, but in our current neighborhood I feel pretty safe and I often do.

June: Baby E is definitely on the mend today, though still snuffly and coughing.

July: Baby E is still sick with a cough, but it doesn't seem to bother her much.

August: We just got home from several days at a retreat center with DH's family. We're tired, but we had a great time.

September: The past couple of weeks have been mostly uneventful. Lots of little things . . . chiropractor appointments, shopping trips, much meal preparation and housekeeping, a little bird trapped in our van (we did manage to get it out), conversations with the kids, illness, a teething baby . . . that sort of thing.

October: We've had a fabulous weekend.

November: Yesterday we visited the botanical gardens. They were pretty, and the maze made from shrubbery was quite entertaining for the kids. Unfortunately I was feeling worse by the minute, and Baby E didn't seem to be feeling well either.

December: Baby E is squarely in the red today, crying whether I hold her or put her down.


Translation: Baby E didn't sleep much in 2006. We traveled a lot. We had fun. We were sick a lot (even especially while traveling). I worried about other people being sick. I was tired. My children were a delight and a joy to everyone. Baby E and I were sick some more. Baby E cried a lot. I no longer answer the door to strangers.

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Wednesday, December 27, 2006

Placeholder

I'm here, and okay. Slept most of the day yesterday after my dental appointment in the morning. When I tried to get up in the afternoon, I just felt like collapsing where I was standing, so I went back to bed.

Thanks to DH for taking care of the kids and making progress on the kitchen while I hibernated.

We did go to the library as a family yesterday evening, and then I had enough energy in the evening to begin catching up on things I'd left undone all weekend.

I'm more functional today, and am more than halfway through my normal morning chores so far.

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Tuesday, December 26, 2006

Dec 26th

I had to get up at 6 a.m. for a dental appointment this morning, so when I got back DH let me sleep from about 10 till 3. That was really nice.

I just had some lunch and since all the kids are resting, I'm actually thinking about going back to bed again. Sleeping the day away doesn't sound all bad. :)

I made some mini-loaves last night with rice, teff and tapoica flour and acorn squash, with lemon juice and baking soda for leavening. In case anyone was wondering, those particular flavors do NOT combine well. Teff is pretty good with chocolate, though.

I'm trying to develop a good gluten-free yeast-free bread recipe, but that's a bit stiffer challenge than I had expected. So far I've made combinations with a fairly good texture or a fairly good flavor, but not both at once. :) I'll keep trying.

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Monday, December 25, 2006

Merry Christmas

By the time I put away the soup I'd made and eaten by myself for lunch and did a few other necessary things, it was almost time for Baby E to wake up. I could barely drag myself around, though, so I decided to lie down for as long as I could anyway.

I don't know why I'm so tired. I'm not really that sick. I seem to be getting over my cold, but I'm so extremely fatigued and I keep feeling dizzy and faint, which makes it difficult to motivate myself to do anything that's not absolutely necessary. The pain in my back and shoulder is still there, but not at a level that I would normally let slow me down. Usually it takes a lot more than this to slow me down.

It seems kind of silly to let minor things like this stop me from doing anything, and it's unusual for me. But for some reason this time it's brought me to a screeching halt. I don't know why. I'd much rather be out having fun with the rest of the family.

Anyway, I attempted to take a nap while Baby E was sleeping. I laid there for a while listening to my sinuses pop and thinking about what we might do together as a family when DH and the girls got back.

Just as I was dozing off, the phone rang. It was DH calling to say that SIL The Mentor and Science Teacher BIL had issued an invitation for games and movies at their house after the singing time at FIL's nursing care center.

DH offered to come home and get me and Baby E, but a number of factors made that impractical. He also offered to just come home and stay here instead of going, but just because I'm exhausted and Baby E and I have colds doesn't mean we have to ruin the rest of the family's Christmas. It sounds like a lot of fun and I want them to be able to be there. I briefly thought about asking him to have everyone come here instead, but since we have no food and it's a 45-minute drive for everyone each way, that didn't seem practical either.

So Baby E and I are here alone for the evening once again. She's wide awake and busy, so a nap is out of the question. She's having a blast playing with her new doll.

I thought about calling my parents and sisters, who don't celebrate Christmas and are probably home, but they can't be around anyone who has a cold because of my mom's health issues.

I really should work on cleaning up the various messes left by cooking and festivities. I just don't have the energy, although I'll probably manage to do some of that later this evening. I suppose I should cook something for Baby E and myself to eat. We'll probably just have leftover turkey vegetable soup again. I could probably come up with some kind of holiday treat, but that sounds like a lot of work for just Baby E and me. It makes me even more tired just thinking about it.

I'm sure I can't be the only one home doing nothing on Christmas Day. Is anybody else out there tonight?

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The Best Gift

The family party on Saturday was a success.

I didn't get done everything I would have liked to do, but enough. AJ and M&M were fabulous helpers, picking up and vaccuuming. They're old enough now that when they help, the word doesn't require quotation marks around it.

DH is one of 12 children, so just his parents, siblings and spouses, and their children makes for a big crowd. Our girls have more than 50 cousins. Of course, not everyone is in town, and a few we had expected weren't able to come. Still, I counted 27 people.

Everyone seemed to enjoy the food and the family time.

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The white elephant gift exchange was great fun, as usual. The family has gotten so large that we don't do a regular gift exchange any more--everyone just brings a gift or two, some gag gifts and some nice gifts, and we draw numbers. Adding the ability to "steal" gifts makes it fun, too. The little children have their own small gift exchange that doesn't involve stealing.

BIL and SIL stayed the night with their two children. The 5 kids had so much fun playing together. They left after breakfast, and we went to church.

In the afternoon I still wasn't feeling well, so DH let me sleep for several hours while he took over with the kids.

This morning we exchanged gifts and acted out the story of Christ's birth with a little nativity scene made up of sculpey clay with some additions of plastic and porcelain figures gleaned from various sources.

Now DH and the two older girls are off to sing carols with his family at the nursing care center, and Baby E and I are going to take a nap.

Quote from AJ: "Jesus is the best gift, isn't He? He came to die for our sins, and that was the very best gift of all."

M&M: "But after he died Jesus rose again, and he's alive!!! Reall-wy alive! That's the good news!"

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Saturday, December 23, 2006

Two Hours

DH cleaned the kitchen last night, and I got a lot more packed into bins in the dining room . . . fabric, sewing notions, yarn, patterns and half-completed projects each in their own bins.

Now it's down to the things that are more random and not-so-easily categorized: receipts, old shoes, doll clothes, magazines and newsletters, candleholders, coverless books, clothes needing repair, hairless dolls, that sort of thing.

For now I'm giving up on that project. I think I'll put the curtains back up over the doorways to the living and dining rooms. People can eat at the kitchen table and on the couches in the family room if they have to.

DH just left for a family meeting with his parents and siblings to discuss decisions regarding his dad. Everyone will be coming here after that, perhaps 2 hours from now.

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Thankfully DH put the turkey in the oven before he left. I would never have been able to lift it into the oven with the current state of my shoulder--just getting dressed was enough of a challenge. I'm hoping a strong dose of Ibuprofen will get the swelling down enough that my fingers will stop going numb.

My goals for the next two hours are relatively small: Try to get Baby E to take a nap. Feed the kids lunch. Keep an eye on the turkey. Get the floors tidied and vacuumed in the entry, family room and kitchen/nook. Clean the bathrooms and put out fresh towels.

If I have time left after that, I'll mop the kitchen floor. I'd like to get the veggies chopped, peeled and ready to cook, and bake a cake from what at least appears to be a safe mix. But if necessary that can happen after people start arriving.

Still, it seems that just accomplishing that might take a miracle.

Baby E just finished teething on me and fell asleep. I'm off to the races!

[Update: She woke up screaming as soon as I laid her down, and kept escalating until I finally got her out of her crib 30 or 40 minutes later.]

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Friday, December 22, 2006

Thirty

I'm 30 today.

My kids and husband gave me sweet cards and gifts this morning. AJ picked out some darling salt and pepper shakers for me, DH gave me flowers and a new camera (I'm very excited about that, but haven't had time to play with it or read the instructions yet), and M&M gave me a camera case.

Three friends (two who have moved out of the area but are in town for Christmas) each came over for a little while to visit today and yesterday, which was nice. They were here at separate times, and each helped a bit with getting my house ready for the big family Christmas celebration (30+ people) we're having here tomorrow.

Morning came over both yesterday and today. She gave me a thoughtful card and gift, and my friend Elementary Schoolteacher baked blueberry bread for us (I couldn't eat it, of course, but I let the older girls have some).

We didn't make much of a dent, but it was wonderful to connect with friends I hadn't seen for several months and have some adult conversation.

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Even with two adults here at a time, it took most of our time and energy just fixing meals and caring for the kids. We managed to do one load of dishes each day, sweep the floor, partially pack a bin or two, and put some books on a bookcase.

My house still literally looks like a disaster area. As I've been saying to DH over the past few months, all I really wanted for my birthday and Christmas was a clean house. Hopefully I'll be able to get a lot done after the kids go to bed tonight.

DH has been over at the hospital almost every night this week. I'm glad he's been able to do that. We had considered the possibility of DH and his siblings in the area taking shifts helping to care for his dad at home for the next few weeks, but ultimately the family decided to make use of a nursing facility.

Apparently FIL has a problem with his heart valve (it's only opening a tiny crack--0.4mm--to let blood through) along with the multiple myeloma. He's 88. This is a man who routinely has root canals with no anesthetic and does a vigorous hour-or-two-long workout every day (something like 100 jumping jacks, 50 times running up and down the stairs, etc). He's been more fit and active than most 20- or 30-year-olds until now.

My mom has been quite ill since Thanksgiving, but is finally better now. My sister is still waiting to hear back results for the tests she underwent last week.

I just finished cooking and eating chicken and brown rice with the kids. They really want me to have a cake, but I'm not sure I have the energy and imagination to come up with one I can eat--especially since Baby E and I are doing Candida treatments so can't have any sweetener except Stevia.

I spent most of the afternoon trying to work out mixups and issues with Baby E's prescriptions, including one that was mailed to the wrong address and we will use the last dose of tonight.

My back and shoulder went out again on Monday, so I was glad to be able to get a short-notice appointment with my chiropractor today. I'm sure I'll feel better as a result, but right now I'm just more sore from it.

Baby E has been fussy the last few days, and wanting to nurse every hour. We've finally gone two days in a row without an obvious allergic reaction, but she's cutting 4 molars.

I really need to work on finding the floor in the living and dining rooms so we can use those rooms tomorrow, and I need to get the guest and bath rooms ready for those who are staying overnight.

We have a huge Norbest turkay defrosting in the refrigerator, but I'm not sure it's going to thaw out in time. It's supposed to be corn-free, so I hope it will be okay for myself and Baby E. I'm not sure what else I'm going to cook yet.

DH is trying to see if we can work it out to have the first part of the party at the nursing care center and then have everyone come here after for dinner. If so, I think it will work out best for me and Baby E to stay here and cook dinner while everyone else is at the party.

I've been sick for about a month now, but this seems to be a fresh virus. Nothing serious--I'm just congested, coughing and sneezing, and so very tired. Hopefully I won't be contagious by tomorrow.

This morning I talked to my dad to let him know I was sick and couldn't get together with my parents and sisters as planned for my birthday tonight. He said some very sweet things about what a nice daughter and good mother I was, which was nice.

Now Baby E is done nursing, so I'm going to get the kids ready for bed and get back to work on the house.

Purple_Kangaroo, allergic to coconut, avocado, milk, blackberry leaves, latex, many environmentals (mold, dust mites, pollen, cats, etc.) and most antibiotics
. . . Mom to 3 girls, including Baby E who is allergic to corn, soy, oats, kidney beans, apples, banana, mushrooms, mold and ???

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Wednesday, December 20, 2006

Treading Water

DH's dad didn't seem to be in as much pain today. He slept a lot, thanks to whatever drugs they were giving him. DH, his brother who is a doctor, another brother, and a sister were all there along with DH's mom today as they explained and discussed FIL's condition and prognosis.

We will know a lot more after the bone marrow biopsy, but it seems there is more likelihood than DH and I had originally feared that he will have some period of time being able to live a relatively normal life again after this acute infection is resolved.

I'm busy trying to get ready for the big family gathering scheduled for our house on Saturday.

We'll have people staying with us in addition to the party and meals that the large crowd will be here for. Of course, I'll need to cook most everything from scratch in order to keep things safe for Baby E. I'm glad SIL will be here to help with some of the meal preparation, and some of the family are bringing carefully-planned Baby-E-safe items to contribute.

We love hosting these kinds of things, and I'm glad we're having it here. But I am a bit worried about the state of the house.

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I was hoping to be able to get a friend or two to come over and help me find the floors so I can at least vaccuum the carpets and clear off the dining room table so we can use it. But, in addition to other complications, the kids and I are all sick. Nobody is going to want to expose themselves to an illness the week before Christmas, you know?

I've purchased lots of plastic storage bins to shovel clutter into. Some of it's getting sorted now; others will be packed away in the garage to be sorted through later.

Over the last several days I've managed to sort and pack all my fabric yardage into bins; 9 of them. Who am I kidding? I'm never going to actually be able to sew up all this fabric. I don't have the time or energy for sewing.

The house hasn't gotten much attention in the last year or so. These days I'm lucky if I get a shower once every few days, much less clean the house. Many rooms in the house we can't walk through in a straight line. What little I have done has been a challenge since my allergies have recently gotten to the point where any exposure to dust or mold makes me promptly miserable.

Meals and kids have had to take priority, of course. With Baby E's allergies, meal preparation becomes a feat in itself. Researching what Baby E can have or what might have caused her last reaction, dealing with doctors, etc. is a full-time job in itself--even without taking into account that actually caring for Baby E requires so much time and energy when she's having a bad week or month. Some days I literally have to finally let her scream and scream in her crib for a while so I can play a game with or read to the older girls for a few minutes or throw together a quick meal.

I've let relationships fall by the wayside to a large degree, and I'm feeling the effects of that. I've even missed more church services than I've attended in the past year because of Baby E's and my own health issues. Church is the one thing I would almost always manage to get out of the house for in the past, but being sick or having a baby in the middle of a screaming spell makes it rather impossible. It's also difficult to make phone calls with a baby fussing or screaming nearby.

I'm often hesitant to talk to people because I'm afraid they'll ask how we're doing, and I don't want to complain or be a downer. Of course I usually just say we're fine, thank you, and how are you?

I've rarely left the house--especially with all the kids--in the past year and a half since Baby E was born. It's just too hard to take Baby E places with her extreme sensitivity to allergies and the frequency of her illnesses/allergic reactions.

The older kids are suffering the effects of the stress and the amount of time and energy it takes to deal with Baby E's needs and the extra meal-preparation work.

We haven't done much of anything about homeschooling for months. The older girls entertain themselves much of the time. I'm there if they need me, and I make sure they're fed and dressed, but I'm not doing well at meeting their needs for attention, schooling, etc. Not to mention trying to have energy left at the end of the day to interact adequately with DH.

But I can't blame it all on Baby E. I wasn't doing that well at managing life even before she was born, and she does have her good days when I could manage to do a lot better than I do. No, it's not her fault. It's me.

I turn 30 on Friday. Honestly, I am a complete failure in most areas of life right now.

I feel a little like I'm drowning.

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Tuesday, December 19, 2006

DH's Dad

DH went to visit his father in the hospital after work today, and he and one of his sisters were there with his mom when the doctors came in to talk to them.

They believe he has multiple myeloma. The history, blood tests and the cultures they took from his knee during the surgery point that direction. The diagnosis won't be definitive until they can test his bone marrow, which they can't do until the acute bacterial infection in his blood clears up. He'll be on IV antibiotics for the next couple of weeks.

FIL is still in a lot of pain even with treatments at the hospital.

Please keep FIL, MIL and the rest of family in your thoughts and prayers.

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Yes, she's a severely atopic child.

Pediatric Grand Rounds is up at Blog, MD. Since it wasn't up by two days after the normal time, Shinga came in with a swashbuckling venture at Breath Spa for Kids and put up her own version. My account of Baby E's endoscopy is included in both versions; my thanks to both editors.

We are making progress in figuring out what caused Baby E's allergic reaction at the endoscopy. I had to make several phone calls to the children's hospital, but finally got the name of the company that makes the oxygen masks like the one used in Baby E's procedure.

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I was able to contact the mask company last week. The quality coordinator was wonderful and immediately took Baby E's reaction very seriously. She was very surprised that she hadn't heard from the doctor, and said it was almost unheard-of for a patient (or patient's parent) to be the one reporting an allergic reaction.

She called the children's hospital to try to get information about exactly what mask was used. She's going to track down every ingredient that went into or onto that mask to try to find out what might have caused Baby E's reaction.

My guess is that many allergic reactions go unreported. If I hadn't drawn the nurse's attention to it and called the doctor about it, they would never have noticed Baby E's bright red rash and puffy cheeks. And if I hadn't called the mask company myself, the incident most likely never would have been reported or further researched.

Like vaccine reactions, I'm sure that allergic reactions are vastly underreported. Poorly constructed studies that tend to underestimate true allergic reactions, like the Tulane corn study, only help to reinforce doctors' tendencies to brush off or ignore allergies.

Comments about paranoid parents who imagine their child's allergies are so unhelpful to those of us who have to deal with allergies on a daily basis. I'm sure there are a few parents who do this, but I highly doubt it's as many as commonly thought.

With the huge flaws in allergy testing, the fact that the overall allergen load can affect the reaction to any individual item (for example, cross-reactions in which a patient is allergic to specific foods only when pollens containing similar components are in season), the likelihood of growing out of an allergy, so many factors such as medications and time since the last exposure causing variability in reactions to an allergen, and the possibility of delayed or non-IgE-regulated reactions, it doesn't pay to make assumptions. I wish doctors weren't so quick to assume that parents are overreacting or imagining things. Even if a child has a confirmed allergy, they tend to assume that a non-peanut allergy can't really be that serious, especially if it's not one of the Sacred Top 8 Allergens.

In such an environment it takes a persistent person with a lot of chutzpah to actually make sure an incident like this is properly followed up. If I wasn't such a strong advocate for my child, this reaction would have completely slipped through the cracks . . . until the next time Baby E had a procedure and perhaps suffered a much worse reaction.

I received a telephone call today from the anesthesiologist who worked with Baby E for her procedure. Dr. T had told her last Friday about Baby E's reaction--probably after receiving the phone call from the QC rep at the mask company.

The anesthesiologist said she was very sorry that Baby E had a reaction, asked how she was doing now, and said to let her know if she could do anything else for me.

She seemed a bit flabbergasted and kept saying she'd never seen anything like this before, and that the GI specialist hadn't either.

I said that I was very glad we had not given her the dextrose IV or propofol, since another allergic reaction on top of the reaction she did have could be very dangerous.

She said, "We only gave her plain saline and the gas anesthetic . . . just the things we absolutely had to give her."

She said it as though she had been in full agreement with those precautions at the time, or as though it had been her idea. I fought the urge to burst out laughing, thinking of the long lecture she'd given us about how those precautions weren't really necessary.

The anesthesiologist told me that obviously my child was extremely sensitive and that we needed to be very careful any time she had a procedure.

I said, "Yes, she is extremely sensitive. As I mentioned to you before the procedure, she reacts even to things that aren't "supposed" to cause reactions. We have to be very careful with her everywhere."

I didn't quite say "I told you so" or, "It would have been nice if you'd taken us more seriously before the fact, instead of having to see a reaction happen for yourself before you believed me." But I sure wanted to.

She did tell me that it was sevoflurane that Baby E had along with the nitrous oxide. I mentioned that there were several instances in the medical literature about similar allergic reactions to sevoflurane and other gas anesthetics. The sevoflurane data sheet says, "allergic reactions, such as rash, urticaria, pruritus, bronchospasm, anaphylactic or anaphylactoid reactions have been reported."

I don't know if the anesthesiologist will follow up on that at all or not. She said that she didn't think it could have been the anesthetic that caused the reaction because it was gas anesthetic, and was in Baby E's system for such a short time. That makes no sense. The allergic reactions noted in the clinical trials of sevoflurane took place during the induction period (i.e. in the first few minutes of anesthetic use, before the procedure even started).

If the mask doesn't seem to contain anything that could be the cause of Baby E's reaction, I'll certainly be looking to find out more about those anesthetics next.

Another thing I haven't really been able to get an answer about is whether the extent of Baby E's congestion after the procedure was normal or not. She was wheezing and rasping loudly when breathing and her voice sounded gurgly and hoarse immediately after she came out of anesthesia. She was coughing sporadically and remained congested for at least a day or a day and a half after the procedure. She was indicating that her mouth, throat and nose bothered her a lot during that time, as well as her cheeks. The rash took days to disappear.

Is that amount of congestion normal after an EGD, with the anesthetics she received, or not? I don't know, but I did think her tongue seemed swollen. The combination of symptoms concerns me that the allergic reaction may have been affecting her airways as well as her face.

Either way, we really need to find out what caused the reaction so we can prevent it from happening again.

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Monday, December 18, 2006

Never a dull moment

Baby E did much better last night. We skipped the yogurt/probiotic mixture we'd been giving her before bed, and she had no potatoes yesterday.

She slept through the night and her tongue and rashes are getting better. I'm thinking the probiotic may have been giving her problems. The nystatin and her reflux medicine didn't seem to bother her. She seemed to feel much better today than she has for the last few days.

My FIL had surgery today to clean out the infection in his knee and to try to figure out what exactly is wrong with it. They found a heart murmur also, so will be following up on that. We hope he'll feel better soon, especially since we have the family Christmas white elephant party at our house this weekend.


AJ's addition work

AJ asked to learn something new about addition today, so she learned how to add multi-digit numbers. I kept the problems simple, with no carrying. She caught on very quickly to the concept of starting with the right-hand column and just adding one set of numbers at a time across the row. She was so excited about it.

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I helped her write some of the numbers, but she did all the adding by herself with minimal instruction. I do wonder sometimes if I should be concerned about the frequency with which she writes backwards. She easily reads backwards and upside-down as well.

Addition problem written backwards

When DH got home AJ was eager to show her paper to him:

Twelve plus four is sixteen, Dad . . . . One hundred thirty-four plus twelve equals one hundred and forty-six.

See, you start here. Four plus one is six, three plus one equals four, and one plus zero equals one. You just have to add one part at a time. Then you put it all together and that makes one hundred forty-six. Isn't that great!?

. . . This is me, and these music notes are there to show how much I love music. That's my name, and I wrote a five down here because I'm five.

. . . Yeah, I did write those numbers backwards, but [chuckling] that's okay. I'll learn!

I love seeing kids so excited about learning.

I made a chicken soup tonight with my homemade chicken stock and some vegetables, and had buckwheat noodles on the side for everyone to add if desired.

The soup was a huge hit. Everybody in the family devoured it and asked for seconds and thirds. Even Baby E ate every bit--including vegetables she normally turns down. M&M said it was "the most yummiest soup ever" and AJ had something like 4 or 5 servings.

We had an artichoke for dessert, but AJ and I were the only ones who really liked it.

Something I ate tonight seems to be bothering Baby E. She got uncomfortable and started crying during her last nursing session, and then wasn't able to stay asleep the several times she dozed off. I always feel badly when something in my milk bothers her.

I suspect the nutritional yeast I sprinkled on my soup. It's not supposed to be an issue with the Candida--it's a completely different type of yeast (dead anyway) and chock-full of good nutrition. It shouldn't be a corn issue, as it's grown on sugar beets and has no additives. But I'm wondering if Baby E may be allergic to some kinds of yeast along with the mold.

Life is always exciting here.

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Sunday, December 17, 2006

More on Nystatin

Thanks for the great thoughts and suggestions regarding Baby E's sore mouth, everyone.

I did think of thrush, but since the underside of her tongue (where the reflux medicine pools when we give it to her) is red and sore too, I'm thinking it may be something related to irritation from the medicine. She doesn't have white elsewhere in her mouth, and it looks more like a canker sore than like thrush to me.

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I'm wondering if her beloved potato chips are irritating her mouth. We're taking her off hard crunchy things for a few days to let her mouth heal.

The nystatin liquid we are taking is compounded with stevia. The naturopath said she checked it out and there were no corn or soy ingredients, but I e-mailed her today to ask to double-check that there was no glycerine or alcohol in the extract.

Baby E is taking a probiotic with acidophilus and some other beneficial organisms, but it's been in the refrigerator for quite some time, so I'm not sure it still has full potency. We've just about used it up, anyway. She is also eating small amounts of plain yogurt from grass-fed cows, made with nothing but milk and active cultures. That's the only dairy product she gets.

I found one at the health food store yesterday that says it's soy-, dairy-, and corn-free. However, it has FOS in it and with Baby E's fruit allergies I'm a bit worried about giving her that. The wikipedia page on Fructooligosaccharide says that it can be extracted from bananas, among other things. Since Baby E is allergic to apples and bananas, anything extracted from unspecified fruit makes me nervous. If we can find a good probiotic we can tolerate, I will of course be taking it too.

In the area of grains, Baby E eats almost exclusively brown rice and spelt. I offer her amaranth and alternatives like quinoa and buckwheat fairly frequently, but she doesn't like them and since she has so many grain allergies I don't want to try to force a grain she's refusing.

We aren't eating oats, corn or barley because of allergies (I seem to be mildly allergic to barley, and it was one of the things I tested borderline on). We are also currently avoiding all legumes, nuts, seafood and eggs. I'm thinking we're going to have to cut out white potatoes and other nightshades again, too, at least for a few days to see if that might be one of the problems for both Baby E and me. I felt very sick after eating some "safe" potato chips this afternoon, and that's not the first time this has happened after eating them.

The main fruit we eat is pear, which the naturopath said would probably be okay since it's fairly low in sugar. I am, however, mixing tiny amounts of pomegranate juice in with her tapioca-thickened water. I don't really know what do to besides mixing juice in, since the plain thickened water is unpleasant to drink by itself and I don't want her to get dehydrated. She really prefers orange juice, but I don't want to give her that because of the reflux. I'm avoiding grape juice because of the candida, too. I do have some cherry juice . . . I wonder if that would be better than the pomegranate juice even though she doesn't like it much?

I'm sure the tapioca starch isn't the best for the candida either, but if I give her plain water she chokes on it because of the aspiration issue. She hates the taste and texture of arrowroot, and she dislikes stevia which is the only safe sweetener that would be okay for the candida diet.

I grew stevia a year or two ago and had to stop using it because I was getting mouth irritation from it. For that reason I want to be especially cautious with it and keep an eye on how it affects us, although an extract may not have the same effect as the whole fresh leaf. I did find an extract yesterday that is just water, stevia leaf and grapeseed extract that I thought would be worth a try. I'll probably try that in Baby E's drink tonight instead of juice, and see if she'll drink it.

I know from experience that she is not an easy "she'll eat whatever she's offered when she gets hungry" case. She can go a week or more eating almost nothing, and will just nurse a lot to make up for it. It's all such a catch-22.

We do have some florastor in the cupboard. I'll have to check and see if it's outdated or not, and what's in it. The hard part is finding a probiotic (or anything else, for that matter) that is free of dairy, soy, corn, and the rest of our allergens.

Purple_Kangaroo, allergic to coconut, avocado, milk, blackberry leaves, latex, many environmentals (mold, dust mites, pollen, cats, etc.) and most antibiotics.
. . . Mom to 3 girls, including Baby E who is allergic to corn, soy, oats, kidney beans, apples, banana, mushrooms, mold and ???

6 Comments links to this post

Weekend Concerns

DH is at church, singing in both services this morning. I'm home with three sick kids--AJ and M&M have the virus that's been going around (I may be coming down with it too), and Baby E was miserable all night with an allergic reaction.

I wish I knew what Baby E has been reacting to. The reactions have been different each time, so I'm not sure if it's one thing or several things causing it. Last night her throat was so bad she was unable to nurse even though she wanted to, and she was occasionally gagging and choking even when she wasn't trying to eat or drink something. Her reflux, which had been mostly under control, got very severe. The reflux does seem to be at least partially allergy-related.

She had a rash, as has been happening a lot lately. Her ears, eyes and mouth were really bothering her. What started out as a little slit in her tongue turned into two white blisters a day or two ago, and by last night it was just one blister, but it was painful and bleeding.

She slept very little last night, poor thing.

I need to find out the exact ingredients of the Nystatin the naturopath had compounded, and call the comapny that makes the probiotic we've been using. I'm seriously considering cutting out all grains for a while, but I don't know what we'd eat. We're supposed to be completely avoiding all sugars and even avoiding most fruit for the first few weeks of the Nystatin treatment. Baby E doesn't eat vegetables well, and I can't feed her nothing but meat for several weeks. I don't know what to do, but we can't go on like this. She's had some kind of reaction every day for the last several days.

I think I'll take her to the doctor tomorrow and at least have her tongue looked at if she's not better.

My mother-in-law called this morning to say that DH's dad was on the way to the hospital in an ambulance. He injured his knee a day or two ago and it had gotten painful to the point that my father-in-law, the man who routinely has root canals with no anesthetic, was groaning in pain and asking to go to the hospital. He had been resisting the idea of going to the doctor until then. For him to decide to go on a Sunday morning when he was supposed to preach, he must really be in a lot of pain. Since she couldn't lift him and he couldn't get up, she called 9-1-1. The possibility of torn ligaments and an infection in the knee is a concern.

On a brighter note, my mom is doing better, Sis J got home from college last night, and Little Sister Sparrow did great on her sign language finals.

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Mystery

Baby E and I have both been having a lot of trouble with allergies the last couple of days. We haven't yet figured out what's causing the reactions for either of us, but it makes things interesting.

Baby E's symptoms are mostly rashes and mouth/tongue/throat symptoms. Mine are mostly congestion, coughing spells, itching, severe fatigue and wierd adrenaline rush/mood swings. All of this is coming and going fairly frequently and completely for both of us, so I'm pretty sure it is allergies and not an illness.

I hope we figure it out soon.

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Friday, December 15, 2006

Wind Storm

We had the first big storm of the season last night. It was the biggest storm in at least 10 years, judging by windspeed and the number of downed trees and power lines.

Several people were killed by falling trees, many roads were closed, and hundreds of thousands of people were without power. What we thought was lightning flashing in the sky turned out to actually be electricity flashing from downed power stations.

Trees in our back yard

With all the old-growth fir trees in our neighborhood, falling branches are always a concern. The trees pictured above are in our back yard, only a few feet from our house.

After several branches hit the windows hard enough to shake the house, we closed all the curtains we could and stayed away from the windows in case one broke.

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broken fence

One of the old maple trees in our next-door neighbor's yard broke in half, completely pulverizing a panel of their fence. I can't see whether the house next to that was damaged or not, but I don't think so.

broken fence closer view

The neighbor behind us had a medium-sized broadleaf tree break off and land on their house. They were out with a chainsaw earlier today, working on it. Now it's leaning from the ground to where it's propped up on a tree. You can see other loose branches lying parallel to the ground in the trees above their house.


tree down


A branch large enough that neither DH nor I can lift it fell across our backyard bench, but didn't break it. DH estimates it's 20 feet long; I think it may be longer. It's wedged between two trees, so we'll probably have to borrow a saw in order to get it out.

tree on bench
tree on bench from a different angle

I'm so glad we had that maple tree that was rotten at the core taken down this summer. It would have probably ended up on our house with the way the wind was blowing last night. A few years ago, one of the fir trees in our neighborhood dropped a branch so large it penetrated a neighbor's roof and ended up in their living room.

stump

Today we got rain, sunshine, hail and then snow.

The snowflakes were this big:

snowflake in my hand

However, it was too warm out for the hail and snow to stick for long. I'm glad it didn't make the roads too hazardous. We already have enough closures due to trees and downed power lines.

Our power was only out for about 3 hours last night. My grandparents were without power for about 12 hours, starting in the early evening. Some folks in the harder-hit areas will probably be without power until sometime this weekend. It will take a long time to fix all the downed power lines and move the trees blocking roadways.

Our only apparent damage was that the trellis that broke in the last windstorm several weeks ago blew over even further, bending some of the rose bushes more than they were already bent. I hope they'll recover. I really need to get a sturdy stake and a sledgehammer and fix it. Maybe I'll be able to make a trip to the Big Fixit/Buildit-Supply Store this weekend.


downed trellis

We have lots of downed branches to clean up, too. Maybe I'll see if I can get a chainsaw from somewhere and cut them up for firewood. Then we can use them in the back-porch fireplace I hope to have some day. I really miss having a woodburning stove, but at least our gas fireplace still burns when the electricity is out.

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Wednesday, December 13, 2006

Test Results

They told me to call today to find out the results of the biopsy. I made myself wait until 10 a.m. to call. The person who took the message told me to call back if I hadn't heard from them by midafternoon, and they would page the nurse.

I counted the minutes until 3:00 and called again. They paged the nurse. After 10 minutes with no answer, they paged the doctor. Still no answer.

So I left another message.

As I started writing this post, the telephone rang. It was the doctor.

She said the biopsy results were good. Everything looked normal. No damage to the esophagus or cilia at all. No evidence of damage from the food allergies or reflux, no sign of celiac disease.

Now we're just waiting on results from the stool samples. The nurse practitioner is out all this week unexpectedly. I'm supposed to call and talk to her early next week to see what comes next.

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Tuesday, December 12, 2006

Stool Samples

Yesterday I was letting Baby E run around while I got a clean diaper for her. I noticed her grunting and put out my hand to move the open onesie tail aside.

When I got a handful of aromatic brown goo, my first thought was, "Oh good! Finally an uncontaminated stool!"

Then I looked at my watch and realized the lab was closed. We couldn't get it there within an hour of collection, as required.

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"That's okay," I thought. "We can use this for the frozen one." I popped it into the container, sealed it, put it into the plastic bag, and deposited the whole thing in the freezer.

I thought with relief that now we had only one sample left to collect. Since she usually goes when she gets up in the morning or after breakfast, I thought that if I worked hard at it I should be able to get it today.

This morning I watched Baby E intently, checking her diaper constantly, changing it immediately when it was wet, sitting her on the potty frequently and letting her go for long periods of time with no diaper. I was determined to get that last sample so we could go back to life as normal. We've been working on this for over two weeks now, and it's getting frustrating.

No BM when she woke up, none after breakfast, none after lunch.

I had to move the laundry from the washer to the dryer this afternoon. During those few minutes when my attention was distracted, she pooped in her diaper. As quickly as I could, I put her on the changing table and opened it up. Too late. It was wet also. Another stool contaminated and unusable.

Hopefully, I called the lab to ask if it mattered for this particular test (the parasite study) if the stool had touched urine. It did matter, of course. It had to be uncontaminated.

But there was something odd. The lab tech couldn't find the orders for the stool tests in the computer.

Finally she told me that they had been able to complete all the tests from the stool samples we had brought in last Friday.

All this time we've been stressing about getting an uncontaminated stool for nothing. We've been restricting Baby E's diet unnecessarily (no red meat, nothing red, no ibuprofen, etc.).

It would have been nice if someone had told us earlier that we didn't actually have to fill up all the different containers they gave us with detailed instructions that were different for each one (freeze this one, bring this one in within an hour of collection, smear these three on these six little windows in this card on three different days, put a pea-sized pellet in this vial and a walnut-sized pellet in this vial and the rest in this grey container and then fill out this survey and bring it in within an hour of collection, etc.).

They don't even need the one I have in my freezer.

Ah, well, I'm glad that's done.

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Managing allergies with holidays

Here's something I posted elsewhere explaining how we are handling food allergy issues for the holidays.

I have an extremely food-allergic child who is still of an age to put everything in her mouth.

We have decided that, even for holidays, we will not allow people to bring food containing her allergens into our home. I check ingredients at the door, and if it's something that will give her a reaction if she gets a crumb, the offending food immediately goes back out to the person's car or into our refrigerator without being opened.

At other locations, I pretty much just bring our own food and warn everyone not to feed my child ANYTHING without checking with me first. Yes, I have had announcements made to this effect at large gatherings.

I will even ask people not to kiss Baby E, since food on their mouths could cause a reaction for her, and to wash their hands before touching her.

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We also recruit people to help keep an eye on her to make sure she's not picking up crumbs off the floor or food from people's plates. If we are not keeping a VERY close eye on her, we have to hold her if there is food around. Sometimes I feel that might stunt her development, but it's better than an allergic reaction.

I have allergy alert bracelets for her and I designed a tee-shirt that says "Caution: Severe food allergies. Please do not feed the baby."

I do also use the epi-pen as an educational tool. I don't necessarily teach people how to use it unless they're going to be caring for Baby E, but I definitely make a general announcement along the lines of, "The epi-pen is in this pocket of this bag." My thought is that if Baby E is in respiratory distress and needs the epi fast, the more people who know where it is the better.

I also made up a three-ring binder with allergy information in it for Baby E. It has her picture on the front with large red letters saying "Important: Emergency allergy information for [her full name]."

On the first page inside I have her photo again, her name and birthdate, a list of her allergens, and the names and contact information for us and her doctor. Since she is highly allergic to soy and corn I also have in large print circled in red, "No dextrose IV injection" and "no propofol sedative" since those are things commonly given by emergency personnel.

On the second page I have a printout of symptoms of an anaphylactic reaction with the symtpoms highlighted that mean immediate use of the epi/benadryl and a trip to the ER.

I also keep in that notebook copies of the package inserts for dextrose IV and propofol with the parts circled saying that they can be contraindicated for corn-allergic and soy-allergic patients. I've already been in several arguments with medical personnel about this, and it really helps to have the actual package insert to pull out and show them.

Other items in the notebook include lists of ingredients that can be hidden corn and soy ingredients, copies of test results and records, etc. I take this notebook everywhere she goes, and it's invaluable at doctor's appointments, for babysitters, etc.

It has the added benefit that, since I leave it in plain sight, the visual of her photo next to the words "emergency allergy information" helps to drive home the seriousness of her allergies to anyone in the room.

We really need to get her a permanent medicalert type bracelet. For now we're using a colorful bracelet from food-allergy-gear--a seller on eBay who is a part of one of the allergy support groups I take part in online.

If you have any other ideas, please feel free to share them in the comments.

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Sunday, December 10, 2006

Aftershock

At church today, everybody wanted to squeeze Baby E's cheeks. They look so rosy and cute with that rash on them, don't they? Ugh.

After about the third time I started telling people, "Don't touch her face, please" if they even looked like they were thinking about interacting with her. The rash was lighter and less noticeable, and had started to crust over by that point, but it can't have been comfortable to have people pinching and squeezing it.

I don't know why people do that to kids. Has any kid in the history of the universe actually liked having their cheeks pinched? I doubt it. Yet adults who should know better keep doing it, even though they probably hated it when they were a kid themselves.

I did put an allergy alert bracelet on Baby E, and let her go into the nursery. The same people were working as last time, and remembered Baby E and were quite prepared to takee precautions. They used safe snacks provided by me for all the kids in the room.

Nobody complained about it, especially after I showed them the rash on Baby E's face and explained what happened on Friday.

Today I've been feeling a bit overwhelmed by the enormity of Baby E's allergies.

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Now that I know her swelling and rash on Friday were not a normal side-effect of the anesthetic or procedure, it scares me. It's almost the feeling you get when you realize minutes later that you were nearly in a car accident, even though you weren't aware of it at the crucial moment.

With facial swelling, swelling of the tongue and perhaps the throat, and a rash of that severity and quick onset, it could have been a really dangerous allergic reaction. She was congested and occasionally coughing for more than 24 hours after the procedure. I know some of that is a normal side effect of the anesthetic, but I don't know whether the extent and duration of it is normal or not.

I'm so very glad that we worked so hard to keep her from being exposed to any other allergens. Even just something small could have pushed her overall allergen load to a level where she would have been in real trouble. With her face and perhaps her throat and airways already swollen, it probably wouldn't have taken much to cause respiratory distress or other severe problems.

It could have killed her.

That's not something I like to think about, but that is the reality of our life.

We really need to find out exactly what she was reacting to, but I'm not sure that's possible. In order for that to happen I would need someone at the hospital to either be very proactive and detailed about researching it themselves, or to give me the exact brand and product names and manufacturers of everything that touched Baby E during the endoscopy.

I'll call the nurse practitioner on Monday. If anyone would be able and willing to do that or find someone who could, it would probably be her.

An allergic reaction is such a tiny step away from Baby E at any moment. Even at home I can't completely protect her.

Tonight Baby E found a small piece of play dough one of the older girls had left in the playroom. They aren't supposed to play with it unsupervised, but one of them had managed to get the container open and gotten it out. Baby E found the lone piece that DH had missed when carefully cleaning it up. She put it in her mouth and sucked on it briefly before I caught her and took it away from her.

I didn't know what was in it; there are no ingredients listed on the Veggie Tales Silly Squishy Dough Kit container. But I knew it was likely that it contained some ingredient derived from one of her allergens. The chances had to be at least 10 to 1 that it would have something corn- or soy-derived in it.

I took off her clothes so I could more easily monitor for rashes, made sure I knew where the Benadryl and epi-pens were, and waited.

The reaction wasn't long in coming. Within minutes her cheeks had reddened again and she was sprouting a crop of tiny blister-like red and white bumps all over her belly.

It hasn't seemed to bother her much, but it's nerve-wracking all the same.

I can make allergen-free play dough, and will probably do that tomorrow. But I probably can't make the house completely free of all Baby E's allergens, all the time.

Is it fair to ask the rest of the family to brush their teeth with baking soda (or with nothing at all) like Baby E and I do? Can I ask DH to never bring soda pop into the house, ever? Should I refuse to allow a newspaper in the building because the ink is soy-based? What about glue and tape with adhesives that are most likely corn-derived? Waxed paper and paper plates with corn-derived wax on them? Toilet paper and tissues packaged with plastic, sure to be dusted with cornstarch? Even crayons and markers are made with corn and soy derived ingredients.

I can't put Baby E in a bubble for the rest of her life. We have to balance the benefits and risks and constantly make decisions about quality of life for everyone in the household. We try our hardest to keep Baby E safe with household rules like keeping food and beverages in the kitchen. We make a point not to have in the house anything crumbly or drippy with enough allergenic ingredients that a small amount would give Baby E a bad reaction. We do our best to keep her safe.

But we never know when she's going to have a reaction. We never know whether that reaction is going to be relatively benign, or when it might turn deadly.

If I didn't believe that Baby E is in the hands of a loving and sovereign God who has a plan for her life and for our family, I don't know how I would keep my sanity.

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Saturday, December 09, 2006

Anesthetic or Mask Rash?

Baby E looking at Mommy

Earlier today Baby E's rash seemed to be spreading again, moving into welts near one eye. She was so fussy and uncomfortable that I called the GI doctor at the children's hospital.

Dr. AT, who did the endoscopy, was on call. She said that Baby E's throat might be sore from the endoscopy and that it would be okay to give her some Tylenol. A sore throat and congestion are normal side effects of the procedure and anesthetic.

Dr. AT said that she had never seen or heard of a reaction like Baby E's facial swelling and rash after a procedure. She suspected it was some kind of contact dermatitis to the non-latex mask, and said that if it continued getting worse I should give her some Benadryl.

I noticed that E's tongue seemed a bit swollen yesterday, too. I wonder if the allergic reaction includes her mouth and throat. If she is allergic to the gas, the plastic, or something the plastic was treated with, then it might make sense that the tube down her throat or the gas hitting her lungs might have caused the same reaction internally as on her face. Poor kiddo.

I did ask them to double-check and make sure the plastic wasn't dusted with cornstarch before the procedure. The nurse said that the masks stick together a lot so she was sure they weren't, but that she would keep an eye out for that.

It's going to be a difficult task to figure out what exactly Baby E was reacting to in the anesthetic or mask. Facial swelling and rash are possible reactions to some gas anesthetics. I found information on isoflurane, sevoflurane and desflurane indicating that allergic reactions including rash, hives and/or facial swelling can occur as a result of these anesthetics. Halothane can also cause a rash, but it looks like it's more of a full-body nonspecific rash associated with halothane-induced hepatitis.

Since it's the first time she's been exposed to the anesthetics, though, I would think it more likely that there was some soy- or corn-derived product in or on the plastic of the mask.

I actually hope it was one of her known allergens on the plastic. I don't want to see the kid grow up with allergies to the only types of anesthetics that don't have corn and soy ingredients in them.

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Little Trooper

e clapping

tired


Baby E was such a trooper yesterday. DH brought her in around 3:45 a.m. to nurse, but she wasn't interested and we dozed off.

Just before 5 she decided to nurse after all. I wasn't awake enough to be cognizant about it until I woke at 5 and realized she had just finished nursing.

She wasn't supposed to have anything except clear liquids for 6 hours before her procedure, and check-in for the procedure was at 10. I hoped 6 hours before the actual procedure instead of before check-in would be all right.

DH took her back to her own bed so she wouldn't be able to nurse again while I was sleeping.

When we got up and got dressed in the morning, I noticed that the brand tag on my new blouse read "Anxiety." I briefly thought about changing my shirt, then decided that would be silly.

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We let E sleep as long as possible so she wouldn't think about breakfast. She was very fussy when she woke up, especially when she realized I wasn't going to nurse her.

Traffic was light, and we made it to JT's house 10 minutes earlier than we had planned. AJ and M&M were excited about spending the day there.

Even though we had trouble parking and then sat in the car waiting for Baby E to wake up, we got to the correct waiting room of the hospital a full 20 minutes early, at 9:40. We checked in and they said someone would be with us "very soon".

I was so glad DH was there. We took turns walking Baby E around, playing peek-a-boo, helping her color, and generally trying to distract her from thinking about the "milk" she kept requesting.

Something like 2 hours later they finally got Baby E checked in. She liked the little hospital crib and wanted to lie down in it and pretend to take a nap, but the charm of that wore off after 20 minutes or so in the cramped room. We had to wait a long time again before they prepped her for the procedure.

Apparently they had booked more patients than they had rooms. It was 12:45 by the time they finally took her back to have the endoscopy. By that time Baby E was very hungry, thirsty and tired. Still, she smiled and waved at the nurses and anesthesiologist, begged for the glass the kid across the way was drinking out of, and basically charmed everyone.

I was glad I was there to be a strong advocate for Baby E. Every time we saw someone new, I reminded them of Baby E's allergies. Finally, about the third or fourth person we talked to got a green "allergy" bracelet to put on Baby E along with her orange hospital bracelet.

bracelets

Still, a nurse was going to go and get a cup of the dextrose-based oral versed for Baby E, and probably would have given it to her if I hadn't stopped her.

They said they couldn't use the homemade pear juice I'd brought to mix with the plain versed since it wasn't "clear enough", but they could mix it with cranberry juice. I knew the cranberry juice would probably have corn syrup and/or citric acid in it, so I wasn't comfortable with that. I've had the hospital "cranberry juice" and I know it's too sweet to be straight cranberry juice. I didn't want them to give it to her unless I could look over the ingredients first and verify that there were no corn contaminants.

Finally, they went to talk to the anesthesiologist and came back to say that we could either squirt the versed up her nose, which would burn and hurt but would be fast-acting, or we could just skip the versed altogether and go straight to the gas mask.

They said that, although it did have an amnesiac and calming effect, the versed was mainly for the parents' sake. Some parents are traumatized if their child cries when taken away by the nurse. If we thought we could handle having her cry a bit, we could skip the versed.

We decided to skip the versed.

The GI specialist explained the procedure to us and asked if we had any questions. She seemed nice.

Then the anesthesiologist gave us a long lecture about propofol. She reiterated that they weren't going to actually use propofol today, but she felt that it wasn't really necessary to avoid propofol since Baby E had never been given it before. She technically hadn't actually had an allergic reaction to propofol itself.

She went on about how most kids who are allergic to eggs really don't have issues with propofol, and avoiding it because of allergies is not really necessary. We kept telling her that Baby E isn't allergic to eggs, she is allergic to soy, and that propofol is in a soybean base.

The anesthesiologist said that she didn't know what would be in the propofol that was soy . . . but that most people who are allergic to eggs are allergic to the white, and there's only something derived from the yolk in propofol, so it was fine.

I told her again that the liquid base in propofol is soybean oil, and pointed out that the package insert itself gives precautions relating to soy allergy (as well as egg allergy). The propofol package insert says it can be contraindicated with soy allergies, and that soy-allergic people have had anaphylactic reactions to propofol. I really wished we had Baby E's allergy and emergency information notebook so I could show her the package insert, but we had inadvertently left it down at the front desk.

The anesthesiologist said again that most people who are allergic to soy probably don't have a problem with propofol. Yes, statistically most people who react to soy are allergic to only the protein and do not react to lecithin or refined soybean oil. However, occasionally you do get the extremely sensitive person who will react to the lethicin or the oil.

We know that Baby E is in that minority, and we are certain she reacts to soybean oil. We aren't just overreacting here; given Baby E's known, proven level of sensitivity it would be foolhardy to pipe soybean oil into her veins.

Anyway, the anesthesiologist humored the paranoid parents and refrained from using propofol.

A nurse took Baby E from us at the door to Surgery. She didn't cry at all.

They used plain saline in the IV and gave her only nitrous oxide and another gas (I can't remember which one . . . the list of possibilities they had given me earlier included isoflurane, sevoflurane, desflurane and halothane) as anesthetics.

I made sure to ask that they not give her anything to eat or drink afterwards until we were there. They said she could nurse as her drink after the procedure.

Less than 30 minutes later, they were done. We hurriedly gathered our things and went back to where Baby E was screaming frantically in the arms of a nurse.

Her little face was all puffy and swollen, and she had a bright red rash on her cheeks and in a ring around her nose and chin where the mask had been. There was an awful rattle in her throat, and her voice burbled when she cried. She had three lines attached to her; an IV in her foot, a blood pressure cuff on her right arm and a sensor on her left finger.

As I took her from the nurse, I asked, "Is this amount of congestion normal?" They assured me that it was and said she would "just have to cough it out." I see now why a cold is such a contraindication to general anesthetic.

At first I thought the red, swollen face was just from crying, but even after she calmed down and the redness from crying went away, the puffiness and rash were still there. Her tongue seemed swollen, too.

The GI doctor showed us a few of the pictures she'd taken during the endoscopy. She said that we wouldn't really know the results until the biopsies came back, but it was a good sign that everything looked normal in the camera.

EDG photos

Baby E nursed and was able to keep the milk down, although her stomach lurched a few times. She was very upset by the items attached to her hand and arm. She kept holding out her hand and fussing for us to take the thing off her finger.

Finally the nurse took off the sensor and blood pressure cuff. Baby E calmed down a bit for a few minutes, and then she realized that she still had something on her foot and she wanted it OFF! She kept saying "ow" and pointing at her foot and touching her cheeks.

They took us to the recovery room and found a rocking chair for me to sit in with Baby E. The nurse who took us to the recovery room took the opportunity to tell us repeatedly how bad soy is. She told us how dangerous it is for anyone to eat soy or use soy products. Our assurances that we have no soy in our home because of Baby E's allergies had no effect--she acted almost as though she was afraid we were going to go out and drink a glass of the horrible soy milk as soon as we left the hospital.

The nurse asked us to "promise her" that we would read Dr. Mercola's web site and consider the dangers of soy. I told her that I was quite aware of mercola, refraining from telling her that I have a very low opinion of his poorly-researched claims and his scare-tactic marketing techniques. Finally she left us alone.

Baby E was very fussy and restless and seemed disoriented and upset. She wanted both of her hands on my elbows at all times. I rocked her, rubbed her arms and legs, gently stroked her sore cheeks, and sang to her softly. She cried intermittently and nursed several times, briefly. Eventually she fell asleep.

An hour or so after the procedure, another nurse came to take the IV out. She was going to use an oil to loosen the adhesive around the IV, but when I asked what kind of oil it was she didn't know. Since vegetable oil is usually corn or soy-derived, we decided it would be safer not to use it around the puncture in her skin.

The nurse eased the tape off without even waking Baby E, and then she slept through DH getting her dressed in my arms. She kept reaching with her hands to make sure I was there, and then relaxing again after making sure I was still holding her.

Just as we were leaving, I asked the nurse if the rash on E's face was normal or not. She looked at Baby E's chart and said that she hadn't been given anything that should cause facial reddening or a rash as a side effect. She didn't know why she would have a rash like that, but it was not usual.

As soon as I put Baby E down in her car seat, she woke up. I gave her some bread and plain yogurt in the car. She was very eager to eat.

We picked up the older girls and headed home, where Baby E and I cuddled on the couch to watch a BabySongs video while DH took AJ and M&M out to run some errands.

Baby E and I laid on my bed while she nursed, and we both fell asleep. We slept for 3 hours, finally waking after DH and the older girls finished eating dinner.

rash

These pictures were taken just before I put Baby E to bed. The rash was lighter, but still there.

E's face

Today we're all still tired. Baby E's rash has faded somewhat and the swelling in her face has gone down. She still has a bit of the rash in a ring around her face, especially under her eyes at the tops of her cheeks. She's still congested. She's a bit fussy and grumpy, and afraid to let me out of her sight, but otherwise seems to be mostly her normal self.

She gets really frightened whenever I try to put her to bed and leave the room. It's almost as though she's afraid that if she goes to sleep without me there she'll wake up in pain with tubes attached to her, in the arms of strangers again. I hope her fears will calm soon. It makes me wonder a bit if skipping the versed with its amnesiac effects was a mistake.

Last night I fell asleep on her bedroom floor, and today I ended up sitting in her room with the laptop while she tried unsuccessfully to take a nap.

Now I need to find out whether facial swelling and a rash is an acceptable side effect of the anesthesia or if it's considered an adverse or allergic reaction. I suppose it could be from the mask itself, but it was worst on her cheeks where I don't think the mask was touching. I didn't see exactly how the mask sat on her face.

It's definitely something we'll ask the doctor about. I'm also keeping a close eye on her today because she seems a little warm, and a fever is one of the things to watch for after this type of procedure.


[Update: After talking with the doctor and the anesthesiologist, it is clear that what Baby E experienced was in fact an allergic reaction.

Neither of the doctors had ever seen or heard of anything similar. They expect it was a contact reaction from the mask. The company that manufactured the mask is now trying to track down exactly which mask it was and what could have been in or on it.

However, there are reports in the medical literature of similar reactions to sevoflurane, which was the anesthetic used along with nitrous oxide for Baby E.

The endoscopy was negative.]

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