Allergic to Allergies

My son has every allergy you can imagine. It’s a lot of work. He went into anaphylactic shock three times before the age of three. He has sneezed more and produced more mucus than the rest of my entire family put together. And while that fact is funny, it is no laughing matter. As exhausting as it is for me, I can only imagine how incredibly deflating and tiresome it is for him. He’s proven to be quite a trooper and is famous to my friends and fans as SuperBoy. Boisterous you think? No. let me explain.

Kenneth was born at approximately forty weeks to the day. He came out with a push and a half. He was more than eight pounds, almost two feet long, and had a faint mustache. At three months old, he would scream after every bath. I thought he didn’t like to be nudey in the breeze. No, he had eczema, and the lavender bath soap and lotion that I was using was torturing him. I didn’t know until one night when I only had cocoa butter at my disposal. After smoothing it over his little man body, not only was he not screaming, he was relaxed and comfortable. His skin needed that moisture and oil and he was pleased. At his next check up the doctor said: eczema. Eczema? Ok, I can handle that. No dyes or perfumes and plenty of cocoa butter. CHECK!

He trucked on through those next few months without incident. His skin was soft and smooth and his hair was super-curly-awesome! He was handsome and happy. I nursed Kenneth for seven months and when I switched to formula, a different set of problems started; sneezing, coughing, runny nose, congestion. So. Much. Congestion. After about a month of formula, Kenneth was transported by ambulance to the hospital. It was Christmas Eve. Pneumonia; the doctor said.

I watched as my infant child was held down by four adult women and then given an IV. I stood by as he was wrapped in towels and had his nose suctioned to remove the excess of mucus. I was witness to him receiving breathing treatment after breathing treatment after breathing treatment. And he still struggled to breathe. We spent his first Christmas in the hospital, sharing a twin sized hospital bed and slept at a 30-degree incline. I was broke, had no prepaid minutes on my phone, no charger for my phone and no change of clothes. At the time, I received a few visitors and I received a pair of fuzzy pajamas and socks. i also received a beautiful painted glass tile that doubled as a comforting nightlight. It was a really rough time and those few items helped me to feel at ease trying to help him feel at ease.

When we were finally released from the hospital, I went home and cried. Kenneth was almost back to himself, but I was exhausted. I called friends to see if someone could come and watch him while i tried to nap, but i wasn’t that lucky. i cried more. It took almost two weeks for his arm to heal from the adult-sized IV needle that was jammed into it. The bitch nurse that did so laughed at me for crying while i watched her shove a needle the size of a McDonald’s straw into his arm. She smirked and said “are you going to be alright?” and then smiled at the other nurse that was helping to hold my child down. I wanted to punch them both in the face. I will never forget her rude, inconsiderate, wrinkly mug. I hope i see her another day so i can tell her just how ridiculous and subpar she was during such a sensitive and traumatic moment in our lives.

Pneumonia, huh? It came on so suddenly. He hadn’t been sick or outside. It was December but it wasn’t cold (I mean, this is Southern California). But ok. Pneumonia, I guess. No dairy for a few days, no exposure to the cold, keep him hydrated and take all of his medicine. Got it. Pneumonia? We can handle it! CHECK!

Kenneth returned to the hospital emergency room just two months later. This time they said bronchitis. Bronchitis? Isn’t that one symptom shy of pneumonia? Good grief. But ok. We didn’t stay. I refused to be checked in or admitted. We got our diagnosis, our prescription and went home.

This became a cycle that went on for about two years. Kenneth was either at the doctor, or at urgent care. There were also a few emergency room visits. He was transported by ambulance again, when he was about four. We’d actually gone to the doctor, but his blood oxygen was so low that she called 911. Devastating.

Every episode was a bout of coughing, sneezing, snotting, choking, and pure misery. Sometimes his eyes would just scream “help me!” It was just murderous to watch. I always felt like I’d done something wrong; done something to him. I wondered if I’d inadvertently made him sick. But how, how do you give someone bronchitis or pneumonia? What set of skills do you need to have to impart such a condition? I felt guilty, and like an outsider. I had to stand back, step out-of-the-way, and watch other people care for my son.

I didn’t know what I was in store for. I had no knowledge of food allergies or their impact and effect on my infant/toddler child. I spent days, nights, and weeks watching my son struggle to breathe. He would not eat because he couldn’t breathe and there was just so much mucus that every swallow would lead to choking. He was miserable and I was too, twelve times as much. No one wants to see their child suffer through any kind of illness. It makes us parents feel helpless and ineffectual. We are the care providers and we are outdone and undone by a “bug”, a flu, a pneumonia. It sucks.

As time went on, Kenneth’s flare-ups would become (what I thought was) somewhat predictable. But then there were also times that they came on suddenly and unexpected. It was a life-or-death guessing game. Russian roulette… with an unknown weapon that had a hair-sensitive trigger. Every time I thought I knew what was going on, something would pull that trigger and I’d be back to square one. At some point the pediatrician said that Kenneth had asthma. Just “asthma”. Did I mention that he was diagnosed with eczema at just three months old? Yeah, so there was that, and now the asthma. Inhalers! Nebulizer! no cold, no wind, no dust, no pets!! asthma? CHECK!

The worst part of any and all of this was watching my son have to deal and adjust. He received shots, syrups, chewables, breathing treatments, inhalers, and steroids. STEROIDS! You know the culprit: prednisone! awful stuff. I mean, an absolute God-send in the way that it targeted his swollen bronchial tubes and allowed him to breathe. but HORRID in the way that it turned him into an emotionally unstable toddler HULK! He was bouncing off walls one minute, crying the next, and anywhere in between at all times. One morning, I had to get him ready for our morning commute. At that time, I just got him dressed and put him in the car. He never woke. But one fine morning, he did wake; and he cried and cried and cried. I knew it was the prednisone taking hold of his emotions. He was inconsolable and it ripped my heart out. So, considering all that he had been through and was going through, I had to decide if I should actually give him the prescribed medicine that he needed to make him better: TO HELP HIM BREATHE. Or I had to watch him struggle with every breath. Whatta crock!

I called the pediatrician and described what happened. Kenneth was prescribed an alternate course of medication that had zero to no effect and nearly had us back at he hospital the next week. Again, I realized the gravity of this drug induced torture upon my child. Kenneth became so disagreeable and defiant. And moments later he would be crying. To make matters worse, I had to leave him at childcare on some days knowing that his heart was broken and that he didn’t feel good. I really don’t know how I kept a job through those years.

During all of these bouts of asthma and eczema flare ups, my son would have allergic reactions to particular foods. At almost 3, he nearly died from exposure to peanuts. And that was the THIRD time that he’d been in anaphylactic shock. I have no idea what was the cause of the first two situations. He would vomit when he ate eggs, wheeze when he ate marshmallows, and all dairy products would descend upon his sinuses and create a constant and steady congestion that would surely lead to urgent care. I missed hours, days, and weeks of work. I spent many nights watching him, holding him, and administering medication at all hours of the night. I was tired for me and exhausted for him.

We have come a long way, but we didn’t do it alone. Kenneth is nine years old now. He is tall for his age, and slender for his size. He destroys a pair of shoes every two months and could eat his weight in pizza and ice cream. He spends his spare moments drawing, reading, chasing Pokemon, and doing those things that classify nine-year olds as exactly that. It took years for us to get to a point where he could just live his life comfortably. I blogged about her some time ago, but his health and well-being is due in part to our pulmonologist. She prescribed a strict regimen of maintenance medication that makes it possible for him to run, jump, and ride bikes without a hospital trip. He still has flare ups and complications now and again, but it’s nothing that we can’t handle.

I joke that “I’m and untrained, unlicensed, unrecognized respiratory therapist”. But it’s the God’s honest truth. Kenneth went to camp this past summer — for a whole week! The thought of sending him away gave me anxiety. I had to load his medical history and medication profile into the camp’s online registry. It seemed arduous at first, but I simply sent the prescribed medications in their proper containers with their pharmacy labels and all things went as flawless as if I’d been there myself. His school, our church, and camp are all very considerate and helpful. Our camp liaison returned with kudos from the nurse stating “he was awesome”. He didn’t have any flare ups while camping. 🙂

kmt-at-camp-summer-2016

Photo courtesy of Forest Home Christian Camp: The Village Summer Camp 2016

I belong to and monitor several support sites: Food Allergy Research and Education, Kids with Food Allergies, and suggest that everyone support and protect their allergy sufferers with awesome products like the ones available at AllerMates.

My twins had shown some food sensitivities in their early days, but luckily it appears they’ve dodged that bullet. They just turned three and we can have them tested to know for sure. While I certainly want to know if they have any allergies and avoid all near-death experiences, I dread the blood drawing and the possible bad news. I’ll credit their mostly organic diet for their improved health. Our household is predominantly organic, and we do our best to avoid those dangerous agribusiness foods like: high fructose corn syrup, food dye, food color, and most preservatives. I am certainly not perfect at any of that, but each effort and experience is worth it to know that my kids won’t glow in the dark next week.

As the title states, I am allergic to allergies. And I mean that. I myself have airborne allergies and what appears to be a sensitivity to shellfish. I also battle a mild case of seasonal eczema. But I consider myself armed and dangerous when it comes to food allergies, asthma, and eczema. I have a wealth of knowledge, a library of pamphlets, and assorted literature, and have spent a MINT on prescriptions, over the counter, and other support products to aid my ailing child(ren). I know my  children’s medical history word-for-word by heart. I have their medical profiles and current medications loaded into my telephone and have established heartfelt personal relationships with their doctors, nurses, and specialists. I hope you’ll do the same should you find yourself in this predicament. You’ll thank me later.

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chasing crystal cove

it’s no secret that my son and i spend a majority of our time with our best friends: affectionately referred to as the bestie and the babies.  last weekend we made our seasonal debut trip to the beach.  we’d talked about it for weeks and were finally able to bring it to fruition. an afternoon with three kids and two snackin’ SuperMamas can run pretty costly so if and when we find something budget friendly, we’re in.

we all love the water.  our trips to the beach have become pretty status quo over the years. visiting at least two or three times in the summer months.  kids are so amazed and enamored with the sea. i have come to discover that my own love of the sea is long standing and strong. i have always been attracted to the sound, the sand, the shells and the animals. we have previously visited more popular and populated beaches… where finding your own sand station for the day is challenging. with the magic of four wireless digital devices a few traffic setbacks and this:

the “are we there yet?” trio. available in loud, louder and screeching.
SuperBoy, SweetHeart and The MadMan respectively.

we were steered to crystal cove. a state park.

after paying what we thought was an enormous amount to park and speaking with a very pleasant but slow talking park representative, we were advised that the beach itself was about an approximate half-mile walk away. we pressed on.

we decided to take a tour first to determine whether or not we wanted to set up camp. we gathered the children and the keys, trekked through the tall wildflowery path and voiced our skepticism and hunger along the way. there was a vantage point that allowed us to survey the cove itself.  it was quiet and serene. there were beach-goers, but plenty of space.

we decided to set up camp. i went back to the car and gathered everything we had determined to be necessary and required (remind me never to volunteer for that duty again).

with the help of passersby i managed to navigate the hill in the picture below with a packed ice chest, duffle bag, back pack, two more bags, two buckets, an over-sized shovel and all the while, wearing flip flops. this is also the main reason that our little camp is located right here. right in front. we didn’t realize it then, but we were right in the way of the state park beach cruising truck.

the hill of death. and that’s our camp. and that’s callie: my SweetHeart.

after setting everything in it’s place, applying sunblock and giving the sand toys, the kids scampered off until we managed to make our sandwiches and set everyone up to finally be able to eat. and we all ate. some of us (us mamas) standing, some of us (our babies) sitting and most of us quiet as a mouse.

turkey sandwiches, cheetos, grapes and gatorade.
it’s what future CHAMPIONS are made of.

we were all so happy that we stumbled upon this little place.  we had a great time.  i don’t really have a lot to say about it because i think i took some good pictures.

The MadMan, enjoying his own section of sand…

we ate, we played, we danced in the water. we fought off a very aggressive fearless seagull that pecked his way through a few paper towels (my guess is he was looking for crumbs and scraps, but all he got was paper — and probably some mild constipation).

the boys and i started the most non-sandcastle-like sandcastle compound, but the princess of the pack decided to completely mow over our hard work to construct a sand turtle safe ground:

sand turtle safe ground complete with seaweed retaining wall

eventually the sand got boring and the waves got interesting… the water was NOT hot, or even warm, but that doesn’t deter children very much. they ran into and out of the waves, with goosebumps on their arms and legs and teeth a-chattering. cute as can be.

watching the waves and poised for their attack!

look at him (AJ on the left), bent down low like a mouse-chasing cat! ready to pounce.

The MadMan never let the water catch him.. not once. but he had insurmountable fun waiting for the waves to TRY. and he threw sand at it. i still haven’t figured out why.

they got cold from time to time and i created a nice little “warming station”:

on a warm towel, under a warm towel, refueling with some fruit
(and sand “what’s crunchy, mommy?”)

or we buried them… … what? why are you looking at me like that? oh, ha! yeah, we BURIED THEM in the sand!

isn’t that the best expression? he looks like he heard the same thing “let’s bury him”… withOUT the “in the sand” part… 😀

that was pretty much our entire day. shannon took the kids down to the tide pools to see the sea critters. i held down the camp and had words with some birds. the SuperHeroes saw some things, touched some things and mistook a crab for a rock!! we all got sunburnt and the ride home was 300% quieter than the ride there. but what a day. and now… for my three favorite pictures:

seagulls. about every half hour for the duration of our stay…

via instagram: my SuperBoy just absolutely enjoying himself.

via instagram: my “disney” photo finish. the MadMan had just warmed himself in the sand next to me. when he jumped up and ran away, i got this shot. ❤ it.

the only thing i can’t really share is the look on their faces as they ran from the waves, shared with me the amazements they saw in the tide pools and how much it made me melt. they are all such good kids. these are the moments that will never leave our minds. “the little things”. a trip to the beach, some sand castles and free waves. it’s times like these that prove how amazing friendship can be and precious it is. we are all blessed.. and i will never let them forget it.

vexed over vacation

tomorrow i will be going on vacation. this will be my first notable vacation in many years. i’ve had some weekend getaways and a few sleepovers with the bestie and the babies, but that’s nothing in comparison to what is planned for my very near future. and while i am very excited, anxious and extremely “ready” for this vacation, i am saddened, as well as heartbroken to be leaving my main man, my sidekick, my number one buddy, my son at home. he will be well taken care of and perfectly comfortable at our home with his toys and his bed. however, i am not so certain that i will be the same.

so, enough with the suspense already, huh? ok. i’ll tell you. due to the overwhelming generosity of my aunt, she and i are going on a cruise. yup, a cruise. we are going to the bahamas, st. thomas, puerto rico and grand turk. i’ve never been on one, have you? i hear they are the bees knees and not to be underestimated. from what i understand it’s a floating party with numerous types of parties and options aboard. sounds exciting right? oh! and the food. i heard that cruise food is food to die for. that it’s just never-ending and mostly delicious (i say mostly, because someone somewhere doesn’t like something– usually). if it’s all so good, why do i feel so bad?

is it because we wanted and planned to take my son? and then later after much deliberation we decided that perhaps we should not? or is it because i’m leaving him for the first time for more than two nights since the day he was born? that seems more like it to me. my son often spends the night with his dad but calls for me rather crankily when he gets hungry or tired. we all love mom’s cooking, don’t we? i know i do. and of course, mamas bathe us and comfort us just before it’s time to sleep. no matter how much complaining he does, his time with his dad is always a great time.

so, again, why do i feel so bad? i have the normal traveling woes of not getting where i need to be on time, lost luggage and forgotten reservations. i have the normal concerns of anyone who is traveling with toiletry items (because of TSA), shoes that require tying and untying (because of TSA) as well as having to purchase my own in-flight food (because of TSA). i’ll remember to remove my eyebrow grooming utensils including tweezers and tiny sharp scissors, so that i don’t get held up and questioned (because of TSA). i’ll also be certain to remove that handcuff key from the bottom of my purse (because of TSA).

everything is taken care of. it’s all been paid for and reserved. our reservations for flights, hotels and cruise ships have been acknowledged and confirmed. the bills are taken care of, the refrigerator is taken care of and the house is taken care of. even my son, is taken care of, for twenty-four hours for all of the days that we will be gone. but… something keeps nagging at me. something is keeping me unexcited when i should be over-excited. i need to shake that feeling. i need it to be gone. if i’m bummed, i will undoubtedly bum someone else out and that’s just a bummer. boooooooo!

ok! so, with that said, i will do as i have been instructed by close friends to do a few things to remedy the homesickness that will fervently consume my son and i. first, i will leave a picture of me with him, that he can hold and keep close. you should know that i’ve already done the same, i think i packed pictures of him FIRST. second, i will make a calendar for him showing the days that we are gone with a photo of the person who will be caring for him that day. next, i will leave my favorite t-shirt behind so that he can sleep in it and feel juuuuuuuuuust a little bit closer to me. i will try to call him every night around bed time to let him know that i am thinking of him and wishing him sweet dreams. and last on my list is to take one of his blankets with me (and i plan on hijacking one of his small trains too) so that i can feel close to him when i want to.

*sigh* ok. i think these things will help. i think. i hope so because i really need to shake this before i get on a plane to the other side of the country and then on a boat for a whole week. i’m sure that tomorrow will bring a renewed feeling of excitement and joy as i finish packing, check items off my checklist and get the show on the road. in the meantime, i’m going to sit and watch him play and smile and drink in as much as i can. drunk on my preschooler’s love is how i wanna be so that the “i left him” hangover doesn’t set in until the plane has taxied off the runway and is into the air where my only options to protest are to jump or jump.

have you ever left your kid(s) for more than a couple of nights? how did you handle that? how did he/she/they handle it? was it bearable? did you have a hard time sleeping? were you too worried to have a good time? talk to me, darlings, i’m about to crumble and i’ve run out of things to blame on the TSA.

aww. back when he was six months old and teething.

just last weekend, he's a little over four years old and having fun at the Orange County Fair.