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I sat at our kitchen table this morning having a quiet breakfast with Bear, and I noticed leaves falling from the trees outside.  On the way to the store, I saw that some of the trees had begun their annual change from green to orange and yellow.  Fall is officially here!

My intended one-month blog vacation somehow grew into two.  In early August, my husband was given a two-week vacation from work, and I worked extra hours at my job to make up for taking so much time off.  We spent a few days in West Virginia visiting family and then traveled to Bermuda for our first real family vacation (and probably the last for a long while)!

Bear was exceptionally cranky for the first few days in Bermuda.  When we were at the pool, she would cry that she wanted to go to the beach.  When we were at the beach, she would cry that she wanted to go to the pool.  Several times, she asked to go home.  After a few days, she began complaining about her feet and a sore mouth.   I eventually realized that she probably had another version of hand-foot-and-mouth disease, despite the fact that she it last year as well.

Once she recovered, she was much more interested in swimming.  We developed a routine of spending our days in the sun at the pool and at the beach.  She learned to build sand castles (or Rapunzel towers, as she preferred), and she took over the resort game room so she could use the pool balls and Chinese checker marbles to pretend that she was making muffins.

We chose the small resort where we stayed based on their assurances that they could accommodate Bear’s food allergies.  The resort is owned and run by a family and their communication seemed much more genuine than the form responses I received from other hotels and resorts on the island.  When we arrived, we met with the chef and discussed various foods that Bear could have.  At first, he seemed very confident that there was no soy in anything that he prepared.  I explained that everything – from pastry to hamburger buns to broths to dressings – had soy in it, unless it was made from scratch and without soy-containing ingredients.  After a quick trip to the kitchen, he returned to agree that most of his supplies did have soy, but he said that they would make homemade meals for Bear.

We had great luck with food the entire week we were there.  We ate at the resort for every meal, and Bear did well.  She enjoyed having sorbet after dinner every evening.  On the last day that we were there, we decided to have lunch at the resort before leaving for the airport.  We had the server re-heat Bear’s leftovers from dinner, and we handed off her sippy cup to be filled with milk.  Once Bear got her food, she took a few bites and a sip or two of milk, and then she pushed back her food and refused to eat anything else.  She kept dipping her finger in ketchup on her plate and coughing every time she put it into her mouth.  Then, her face turned bright red, and she started crying.

We quickly gave her some Benadryl and tried to figure out what was causing her problems.  She had eaten all of the food the night before without issue.  She began crying hysterically for more medicine and while I was trying to console her, she began vomiting.  At this point, we knew that this was serious.  I unscrewed her sippy cup and smelled a sweet smell inside.  I handed it to my husband, and he confirmed that it contained soy milk.

We quickly left the restaurant and went into the lobby to change Bear’s clothes and so I could call Bear’s allergist.  At this point, I started crying because I realized that what we had tried so hard to prevent had actually happened.  The nurse at the allergist’s office told us to give her more Benadryl, and we did, but within a few minutes, Bear was throwing it up too (on the nice rug in the lobby).  Once we got her clothes off, we discovered a rash quickly moving down her body.   Her face was dark red, and when she wasn’t vomiting, she was leaning her head on one of our shoulders.  She looked awful.

I called back the allergist’s office, and they convinced me that since the Benadryl hadn’t stopped the reaction and since it was continuing to progress and in light of the anaphylaxis that she suffered a year ago from soy milk, that we needed to give her the Epi Pen.

I could hardly speak at this point, because I was so upset.  The nurse thought that my reluctance meant that I didn’t know how to use it.  I knew how to use, but I just didn’t want to!  The idea of jabbing a large needle into my daughter’s leg was a horrible one to me!

My husband held our poor little girl in his arms, and pulled off the top of the pen and put it up against her leg.  It snapped, and we counted to ten.  Bear screamed.  I pulled it back out of her leg, and held her tight while she cried while my husband told the hotel staff that we needed to go to the hospital (a requirement after an Epi injection).

They brought around this old hotel van (I’m sure because Bear had been throwing up on their nice rugs) and we climbed inside.  In hindsight, we should have called an ambulance, but we had been there long enough to know that it takes forever to get anywhere on that island, and the hotel staff thought that they could get us to the hospital more quickly.  We rolled around in the back of this van while an assistant manager did his best to quickly navigate the congested Bermudian roads.

Bear became very quiet and limp and would not keep her eyes open.  For a terrifying 25 minutes, we screamed at her to stay awake.  She seemed to rally by the time we reached the hospital, and after going through the slow registration process and having a nurse check Bear’s vitals, a very nice nurse informed a doctor that we were supposed to be on a plane in about two hours.  She listened to Bear’s lungs and thought that they sounded clear, and she ordered some steroids and more Benadryl for Bear.  Contrary to the normal procedure in the U.S., where Bear would have been admitted and watched for several hours, she told us that if anything seemed amiss with Bear that we should not get on the plane and she let us leave with more Benadryl to take with us.

Amazingly, we arrived at the airport a little more than an hour before our flight.  They allowed us to go through customs, and Bear seemed tired but OK by the time we boarded.  Once we exited the plane in Atlanta, I noticed that her rash seemed to be returning, so we gave her more Benadryl.  It quickly went away, and by the time we boarded our flight home, Bear was exhausted from the day’s events and the massive amount of Benadryl she had consumed.  When we got her home, she literally ran to her bed and threw the top half of her body onto it as though she were trying to hug her mattress.  I felt the same way!  I wanted to kiss our front door, but I was too tired.

The next day, Bear seemed mostly recovered.  She had a continuing cough and really disgusting, loose stools, but otherwise, she seemed well.  She now refuses to drink milk of any kind, however.  She requested it out of habit for several days after the event, and after a sip or two, she would push the cup away and tell me that it was “spicy.”

The experience really reaffirmed to us that all of the efforts that we have made over the past year to control her food were worthwhile.  I had almost convinced myself that her allergy must have disappeared.  Clearly it has not.  I also have no desire to travel anywhere again in the near future.  Home is a wonderful, safe place, and we’ll happily stay right here!

 

Bear ran out of milk at daycare yesterday.  Actually, she ran out of Lactaid.

In a pinch, my husband, who dropped Bear off and who was already running late, agreed that they could give her regular milk instead.  He did not have time to think about the consequences.

When I picked up Bear, she refused to walk with me.  When I held her, she screamed.  So, I let her walk, while I half-dragged her to the car.  She cried the entire way.  I assumed she was in a bad mood.

On our way home, I attempted to console her by explaining in detail all that we would do once we were there.  We would see Doggie.  Yes, she nodded her head.  We would change her clothes.  Yes, she nodded her head.  We would make dinner.  No nodding.  No eat, she said.  You’re not hungry? I asked.  No eat, she insisted.

At home, she agreed to a warm bath, which she quickly ended because of tummy trouble, and then I propped her up on the couch with her pillows, blanket, babies, and a sippy of Lactaid.

My husband called to say that he would have to stay late at work, and I mentioned that Bear seemed to have a stomach ache.  He cursed and explained why.

We have tried several times to slowly transition Bear back to whole, lactose-containing milk, but each time, she has developed issues fairly quickly.  We don’t dare introduce legumes into her diet, because we know that she will have an allergic reaction, but with intolerances, sometimes, we are a bit more willing to stretch her boundaries.

However, giving her multiple cups of lactose-containing milk in one sitting was not a good idea.  I don’t blame my husband, because he is not well-educated on such matters, but switching cold turkey must have been a shock to her system.  And, it is a good reminder for us that a problem that seems non-existent when well-controlled comes back in a fury when given the chance.

While listening to Morning Edition on NPR on the way to work a few days ago, a story of particular interest to me began playing as soon as I drove into the parking lot for my work.  Instead of turning off the car, and going into work, as I should have since I was already late, I sat in the car and listened to this.

I self-congratulated myself as I heard the reporter beg her son to eat his vegetables.  I shuddered a little when she told him that eating his vegetables would make him a big boy.  I thought, that woman needs to talk to Ellyn Satter.

Within a few radio seconds, the reporter was on the phone with Ellyn Satter, a therapist and dietician who has written a number of books about feeding young children, and Ms. Satter began explaining to the reporter that the harder she worked to get her child to eat something, the more likely that he would resist.

When Bear was starting solids, I was at a complete loss at how to feed her.  I felt like her pediatrician gave us very vague guidelines, and as a clueless mom with no previous experience, I took to googling.  Fortunately, I began seeing a pattern of other moms who reported that Ellyn Satter’s book, Child of Mine, was pivotal in forming the way that they fed their children, and so I ordered it.

Shortly before the book arrived in the mail, I found myself engaged in the usual struggle to get Bear to try a new solid.  I put the spoon of sweet potatoes that I had lovingly pureed to her closed lips and she turned her head.  With animated gestures, I tried some and demonstrated how much I liked it.  She took a swipe at the bowl.  I began bargaining with her.  If you just try it, you’ll like it, I told her.  Finally, I stood over her and when she opened her mouth, I shoved in the spoon.  Bear protested and spit sweet potato onto her tray and looked at me like, why, mom?  I did not want my child to become a picky eater.  I am not.  My husband is not, and Bear was not going to be a picky eater either.

Early in the book, Ms. Satter essentially says that forcing your child to eat something means that as a parent, you have a problem with control.  This sentiment pained me.  Was I controlling Bear by trying to get her to try something new?  Was this control hurting her and hurting me?

Quickly, I shifted my efforts at meal time from trying to get Bear to eat to simply providing food for her.  If she did not want it, she didn’t have to eat it.  This approach made meal times so much more relaxed, and I quickly let go of the frustration that I felt inside when Bear refused to eat something.  I would still offer it, but she could choose whether she wanted to eat it or not.

However, this week’s story on NPR made me realize that I am still controlling Bear’s meal times in a way that Ms. Satter would not approve.  She tells the reporter to let her son eat bread, even five pieces of bread at meal time, if this is what her son wants.  In Child of Mine, she suggests putting food on the table and allowing your child to eat as much or as little as the child chooses and to always include some food that you know that your child likes.  Her theory, and that of others I assume, is that children instinctively know how to self-regulate, and they will eat what they need and not over eat what they do not.  According to Ms. Satter, by allowing children the freedom to control how much they eat during a meal, they will begin exercising their internal self-control.

My problem is this:  When I cook, I rarely make enough to put in serving dishes.  I make enough for the meal, and I dish food directly onto plates.  In light of Bear’s restrictive food allergies, sometimes Bear gets different food than my husband and I, although I try to avoid this as much as possible.  I serve Bear her food on a plate, and generally, there is no more of this food beyond what I have given her.  Then, I am comfortable with allowing her to eat all or none of it.  This is her choice.

The issue arises when I serve something that there is more of, like a slice of cheese.  I will cut up pieces for Bear and put them on her plate with the rest of her food.  She loves cheese and will always eat it first.  Then, she’ll turn to the refrigerator and beg for more cheese instead of eating any more of her food.  My husband and I do not indulge Bear in this request, and I wonder if in this way, I am deviating from Ms. Satter’s suggestions.  Perhaps I should cut more slices of cheese and make them available at the table when we sit down to eat.  Then, as Bear finishes what she has, allow her to have more if she wants it. 

This is where I find myself struggling with Ms. Satter’s theory.  I know that Bear will only eat cheese if given the opportunity.  I am comfortable with allowing her to eat the cheese on her plate and then allowing her to choose to eat the rest of her food (or not) with the assumption that if she is hungry, she will eat some of the rest of her food.  If she has an unlimited supply of cheese (at least, unlimited to the extent of what is on the table), I don’t think that she’ll ever reach the conclusion of “I am still hungry.  I have no more cheese, so I’ll eat something else.”

Perhaps, I need to return to Child of Mine.  Perhaps, I need Ellyn Satter on speed dial.  Are any of you familiar with Ellyn Satter’s theories?  Would any of you like to share your thoughts on this or your own battles with toddlers and food?

Is spending too much time on eBay looking for a new pair of shoes for Bear a good excuse for not updating this blog in quite awhile?  Probably not.  I have a couple of pairs that I’m “watching” though.  I tend not to enjoy the bidding aspect of eBay, which results in a lot of watching and waiting.  In the past, whenever I’ve found something that I want – usually after a lot of research and scrutinizing – I have placed a bid only to lose to someone more eBay-savy than myself.  And then, I’ll spend a good hour or two mad about it.  Isn’t the “Buy Now” feature easier?  If only I could find good Stride Rite shoes for less than $30 somewhere else.  Bear is about to grow out the last pair that I bought her at a consignment sale in, um September, so we’re going to need a new pair very soon, and I grew weary of the monthly Target shoe purchases this summer.  I bought monthly not because she grew out of them, but because they fell apart.  The last pair Bear had from there, the ladies at daycare actually asked me not to send her back in them.  They wouldn’t stay on, and she kept tripping on them.  Hence, all of my time wasted on eBay, and I still have no shoes to show for it.

Instead of Trick-or-Treating this year, we took Bear to the zoo.  Fortunately, she is too young to really understand that she was missing the opportunity to amass a lot of candy.  Next year, candy avoidance is going to be much more difficult.  Hopefully, by that time, she will have outgrown her soy allergy.  I feel like we could work around the peanut allergy, but soy is in nearly Every Single Piece of candy that I looked at.  Finally, I purchased a package of special allergy-free Sour Worms at Whole Foods.  The package indicated that it had 20 packs of worms inside.  When I opened the package and took out a pack to give to Bear, I found that it had ONE worm inside.  Yes, one.  As did each and every other pack.  I bought 20 allergy-free sour worms for $6.00, which works out to 30 cents a worm.

Aside from the lack of candy, Bear had a great time.  She recovered from the stomach flu (yes, that came to visit us a week after Hand, Foot, & Mouth Disease), and she loved dressing up for her daycare Halloween party.  She was the last to leave, and we literally had to drag her out of the building.  We treated Bear to the zoo next, and since her favorite books right now are Goodnight, Gorilla and I am a Zookeeper, she was delighted to see the animals.

We kept seeing another young couple with a sleeping baby at each exhibit.  Bear refused to ride in the stroller and for awhile, Dad carried her on his shoulders.  Before a long walk back from Africa, we decided that she needed to ride in her stroller, and we gave her no choice but to get inside.  Bear screamed and howled and trashed and kicked.  I noticed the young couple watching us.  As we walked away with a yowling Bear, I told my husband that they were thinking one of two things:  Either “That’s what we have coming next,” or “Our child will never act like that.”  I remember thinking something similar to the latter one day as a little boy followed me around a store beating on a drum.  Every time I turned around, he’d stop and walk the other way.  As soon as I started walking again, he’d follow me banging on the-most-annoying-toy-drum-ever-made.  Even now, as I recount this, I am thinking, “I can guarantee that my child will never wander around a store alone,” but I am sure that someday this thought too will come back to haunt me just as that young couple’s sweetly sleeping baby will soon enter the Frequent Public Tantrum phase.  I do have limited experience, but I am fairly certain that all toddlers try their parents in this way.  And, I have no doubt that Bear comes by it naturally.

Contrary to my promise to do so, I haven’t updated my blog in a few weeks.  But, don’t worry.  It isn’t because I haven’t been writing.

I wrote a short story that, while still a work in progress, is a good first start and perhaps, something that I’ll submit somewhere someday.  I need more defined goals, don’t I?

Last weekend, I took Bear back to my hometown for the first time since March.  I am always amazed at how when I first arrive, my rural little hometown feels so foreign.  After half a day there, though, it begins to feel familiar again.  The first morning we spent there, I put Bear in her jogging stroller and took a twenty minute walk across town to visit my grandmother.  My hometown is flat with few trees in comparison to where I now live.  I reveled at how it was so quiet and peaceful that I could hear a car driving down the street three blocks away, and if I turned my head in time, I could clearly see it pass between houses.  As I walked, I could easily tell who was home, and even hear moms talking to small children inside their houses as I passed.  Sound carries easily there without the trees to soak it up and other sounds to drown it out.  On our walk back, I thought about how all of the familiar names on realty signs and inscribed into rocks in front of houses now belonged to my classmates rather than their parents.  Later, when we went downtown to shop, I was amazed how some people (mostly those from my parents’ generation) so enthusiastically welcomed me and how others (mostly those from my generation) looked at me like I was the prodigal son returning home and they were his brother.

On Sunday, Bear battled stomach issues that I am fairly certain can be traced to some mystery zucchini bread that a lady in a hometown clothing store gave to my grandmother with Alzheimer’s, who then gave to Bear while my back was turned.  There were a few exciting minutes that my aunt spent frantically digging pieces out of  my daughter’s mouth.  Bear spent most of the next day with some nasty diapers and had periods where she cried and beat on her tummy, crying “Owie!”  Her response reminded me why I work so hard to only give her food that I know will not cause her to react.

Yesterday, after several good days at daycare, Bear came down with a fever.  She also began using her new, favorite word “owie” indiscriminately, so while we knew that something was hurting her, it was impossible to tell what.   At first, she would pull up her pant legs and hit her knees and saying “Owie.”  Then, during diaper changes, she would say “owie.”  She would also open her mouth to say something, and a huge bubble of saliva would come out instead.  These symptoms, along with her fever, seemed concerning, so I called the pediatrician’s office and her allergist’s to see if he would call in a prescription for some compounded non-soy containing Tylenol-type medication.   Around 6:00 last night, Bear began acting strangely.  She couldn’t seem to keep her eyes open, and she was moaning softly.  This, of course, scared me, and I immediately took her to her pediatrician’s after-hours clinic.  By the time we arrived, her fever had reached 104.  Despite enduring a strep culture and a catheter to obtain a urine sample, we left without any answers. Her pediatrician promised that a high fever wouldn’t “boil her brains” but acted annoyed that her allergist wouldn’t let us give her generic painkillers that contained soy.  I was annoyed that he was annoyed, but mostly I was tired and sad that my daughter was still not well and that we didn’t have any way to help her.

Fortunately, Bear’s fever broke last night.  She has not felt well today, but the absence of the fever has greatly improved her spirits.  She seems hungry but doesn’t want to eat.  She continues to have strange drooling issues and to say “owie” when I change her diaper.  She has also started telling me that her hand hurts.  We think that she has Hand, Foot, and Mouth Disease, but until blisters start forming, we won’t know for sure.  She seemed happy to take a nap, and for now, is sleeping peacefully, and I am still waiting for a call from the compounded pharmacy that someone has made a painkiller that my little girl can safely take.  However, I am hoping that we’ve passed through the worst.

Baby Toes, originally uploaded by Ryan Abel, Creative Commons, Flickr.

This morning, Bear woke up in a really bad mood. Nothing seemed to quell it. She was not happy after guzzling a cup of milk. She screamed as Daddy stretched and hitched up the dog for her beloved morning walk. After the walk, she stood at the side of her high chair and shook it yelling, “Baby! Baby! Babeeeeey!” Yes, the child wanted to eat. Unfortunately, we were not ready for breakfast. Daddy and I really needed Bear to wait until at least one of us was dressed and ready to sit in the kitchen with her while she ate. Besides, it was time for “Sid the Science Kid.”
Against my better judgment, but knowing that nothing other than food – not even “Sid” would be able to satisfy her – I filled a cup of corn puffs and set her down in front of the television in our bedroom to eat and watch “Sid” until one of us was ready to feed her a proper breakfast.

Now, these things that I refer to as “corn puffs” are just corn that is puffed. My husband brought them home from the grocery store last weekend in an attempt to find some processed (i.e., convenience) food that Bear can safely eat. They are not salty or sweet. In fact, they have little taste at all and tend to stick to your teeth. For some reason, my daughter enjoys them.

She seemed happy enough, munching and watching “Sid.” After a few minutes, I looked over at her to see that she was no longer eating. Instead, she was putting corn puffs between each of her baby toes and squealing with delight. I motioned for her daddy to watch, as we caught a little glimpse into our daughter’s psyche. “I’m glad to see that she has finally come to her senses,” I mused out loud. My husband looked at me like I was crazy. “Well,” I explained, “what else do you do with food that tastes like Styrofoam? Certainly not eat it!”

At this point, the dog burst through our bedroom door that doesn’t quite latch and headed straight for Bear with his tongue wagging. Within seconds, the corn puffs between Bear’s toes were gone. “See. Someone likes them,” my husband said pointedly; proud that his purchase was appreciated. “I’m just glad that the dog ate them,” I thought. It would have been bad to watch Bear eat Styrofoam but much worse to watch Bear eat Styrofoam from between her toes, but then again, there is no telling what the child has eaten when we weren’t watching!

  

009, originally uploaded by raisingbrainchild. 

 
I’m offering you a glimpse into my backyard today.  This past week has gone by so quickly, it is nice to slow down for a moment and appreciate the world around us, don’t you think?
 
My husband and I did some “slowing down” and “appreciating” this past weekend.  After a crazy week full of EpiPens and learning code words for soy, we both needed a break from reality.  Instead of going out to eat with Bear, which is something that suddenly is no longer easy to do, we stayed home on Saturday night and grilled steaks (yes, we are Good Midwesterners) in our driveway.  We usually prefer to cook our meat in the backyard on the deck and away from the curious eyes of anyone who happens to walk past, but my husband had big plans to stain the deck the following day and had moved the grill and just about everything else into the garage and driveway.  So, after thoroughly enjoying our steaks, and putting Bear to bed, we took a bottle of wine and two rocking chairs to the driveway.
 
It was a beautiful evening for mid-July.  The weather was nearly cool.  Fireflies seemed to hover over our lawn in the dusk, and no one was about.  We sat there rocking and drinking for hours.  We had better conversations that we have in years.  When the wine was gone, we were both hesitant for our sweet moment to end.
 
Life all too often is frenetic, and it would do my soul (and my marriage) good to invest in more moments like these.

 

Our new companion

 

A new friend of mine told me today, “don’t go looking for trouble,” in response to some questions that I was asking about food allergies, since we are frantically trying to educate ourselves on this topic.  

Two days ago, a nurse from Bear’s new pediatrician’s office called with the results of her CAP RAST, a blood test that the pediatrician ordered to give us a better understanding of some foods that Bear might be allergic to, in light of the soy milk debacle.  Although we are still trying to understand what all of this means, as the world of allergies seems to be a great unknown where nothing is black and white, her pediatrician believes that she has an allergy to soy and likely has an allergy to peanuts.  The test results and her reaction to soy necessitate keeping an EpiPen with her at all times.  Until we know more about her allergy, keeping her away from all soy will be quite difficult.  I suggest that you take a look at food labels next time you are in the grocery store.  Soy and its derivatives are in most processed foods.  

I have been living and breathing food allergies for the past several days, and I will not even attempt to share what I’ve learned here.  Frankly, I’m a little weary of it.  

However, I have “met” some wonderful people over at www.kidswithfoodallergies.org, and they have been more than willing to share their knowledge with me, probably because they remember feeling exactly as I do now.  

When we introduced solid food to Bear, we followed the basic “rules” about solids.  We waited a week after introducing a new food.  We did not give her the big “no-no’s” of nuts, honey, and milk prior to when we were given the OK by her pediatrician.  We still haven’t knowingly given Bear nuts or honey, but I suppose that does not mean that she hasn’t encountered the food in some other way, perhaps prior to birth or through my breastmilk or cross-contamination or at daycare.  Neither my husband nor I have significant food allergies.  We have some family history of some minor food allergies, and I am allergic to certain drugs and a variety of other non-food items, but we were blissfully unaware that this did not really matter.  We had no reason to suspect that Bear would have a major food allergy.  

I feel like we went “looking for trouble” when we gave her soy milk in the first place, since we were concerned that she wasn’t digesting milk well.  Even if we couldn’t have known that we were “looking for trouble,” trouble found us.

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