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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!

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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!

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.

Is it strange that I care what Bear’s doctor thinks of me?

I have internalized this fear, since childhood most likely, that unless I have an illness with a tangible symptom that leaves no doubt to the observer that something is amiss, that doctors will think that I am making up my problems.  It doesn’t help that the primary issues that I have been afflicted with have few tangible signs:  migraines (oh, you have a headache, people will ask?), polycystic ovarian syndrome (for me, a diagnosis based on the exclusion of other causes), and during pregnancy, unexplained bleeding (that was, well, unexplained).

Poor Bear is now bearing the ill effects of my insecurity.  I have no doubt that the response I received from her pediatrician when I called last week about my concerns regarding her digestive issues would have irked anyone.  But, a small part of me wonders if I am dwelling unnecessarily on issues that are not that big of a deal – that other parents wouldn’t think twice about – and therefore, the doctor’s annoyance with me was justified.  This said, Bear is clearly uncomfortable.  She beat on her belly the other night, right before we found floaters in the tub and after refusing dinner.  She wakes up from deep sleep to pull her little legs up to her belly.  She has bowel movements all day long.  And, of course, she reacted quite spectacularly and frighteningly to soy milk.  My mothering instincts, fledgling though they may be, tell me that something is not right, even if the problem is something minor, like consuming too much  milk at one time.

I took Bear to a new pediatrician today.  This doctor actually saw her in the hospital after she was born.  He is famously laid-back and also famously personable, and he was very nice to Bear today.  He did not seem overly concerned about Bear’s trouble with milk, and despite my continual back-pedaling and apologizes, he ordered a blood test so we can uncover any food allergies that she might have.

Although, this test is not exact and will not answer the question of whether Bear is intolerant to certain foods, it is a starting point.  And, I appreciate that, even if I am completely wrong about the cause of Bear’s symptoms, at least the doctor was willing to suggest something constructive.  Now, if I can just let go of my concern that he thinks that I am going to be a problem parent so that my idiosyncracies don’t make me one.

 

I will apologize upfront if this post turns into a gory discussion of poopy.  That is not my intention.  But for about three weeks, Bear has been having strange and frequent bowel movements.  I will spare you the details, but this change coincided with the culmination of her transition to whole cow’s milk.  Once we had stopped nursing and stopped giving her bottles with formula (which was also cow’s milk-based, by the way) and started giving her bottles of only cow’s milk, her trouble started.  And, nearly every time I change her diaper, I see trouble staring back at me.

Last week, I called her pediatrician’s office about my suspicions that Bear may not be tolerating milk well, and after describing Bear’s symptoms to the nurse, who later described them to the doctor, their consensus was that Bear had a virus.  I was told to call back in a few days if things didn’t clear up.

Today – one week later – I called again.  I described the same symptoms to a different nurse, who apparently had another discussion about them with the doctor.  Again, the consensus was that Bear had a virus.  This time, the nurse, who kept referring to Bear as “he,” told me not to worry too much about this, offered the suggestion that I cut back on the amount of milk that I give to “him” and told me to buy a probiotic to help replenish the good bacteria in Bear’s gut that this mystery virus had cleared out.  I did not share with her that I’d had a similar discussion last summer with a nurse in her office about probiotics and that the nurse told me then that Bear’s pediatrician never recommended probiotics.

At nap time, I decided to give Bear a little soy milk to see if she would tolerate it better than cow’s milk, andin hopes that we could go a few hours without a dirty diaper.  She drank down about four ounces and rolled onto her side for a nap, so I carried her to her crib and left her to sleep.

After a few minutes, I heard coughing.  Then, more coughing.  And a few minutes after that, Bear began crying hysterically.  I walked into her room our found her sitting in the corner of her crib covered with white vomit.  She continued coughing and produced strings of thick mucous.  After a bath, I dressed her again – still crying – and she continued coughing up mucous.  She puked again, and then I noticed that her face was covered with a red rash.  She continued coughing and began pulling at her tongue.

I REALLY did not want to call her pediatrician’s office in light of the helpful response that I had received early in the afternoon, but I was concerned that my daughter was having a real allergic reaction, and I was on the verge of putting her into the car and taking her to the hospital.  A different nurse called me back, and I quickly explained the issue, including all that I had been told by the other nurse earlier in the day.  This nurse agreed that it sounded like Bear was having an allergic reaction and asked concerned questions about her possible lactose intolerance as well.  She agreed to call me back after talking with the doctor.

When I received a call back, it was the same nurse but now with a completely different demeanor.   She told me that the doctor said that she had “dealt with the problem this morning” and advised me to try the soy milk again this evening to observe the response (like my daughter is a science experiment).  When I asked if she was certain that I would not be sending my daughter into anaphylactic shock, she tersely answered, “I’m just repeating what the doctor told me.”

I feel badly enough that I inflicted the soy disaster on Bear in the first place, and I am in no mood to do it again tonight.  We did offer her a little (with Benadryl in hand), but she refused to take anything more than a sip.  Smart girl.  Tomorrow, I’ll be taking her in to visit the doctor to see this issue through, and then I’ll be in the market for a new pediatrician.