asthma – The Osling Chronicles

“What’s the weather today mom?…hot or warm?”

“Is it going to be rainy or sunny?”

“Can we go to the pool/spray park/playground/beach?”

Would it even be summer break without a whole slew of questions before 8 am?! I swear, these girls expect me to be some sort of activity coordinator with new and exciting activities to fill every second of every day. No thank you, minions…not happening.

In the past the solution was simple — GO OUTSIDE!

Sending the kids out to play, spending the day in the pool or at a park. Cheap. Easy. Minimal Effort. BURNS THEIR NEVER ENDING ENERGY! Perfection.

We have been anxiously awaiting the warm weather and have been hopeful that it would also mean the end of all sorts of nasty bugs that have kept us locked away all winter. But, what would life be without a curve-ball….especially with little L.

Cue the apparent reactions to heat/humidity. Who knew?!?!

Now we not only have to account for food/non-food items that will cause FPIES reactions, but we also have to be aware of the heat. Rashes, breathing issues, coughing, behavior changes, GI upset…all things our little zebra has started showing symptoms of when in the heat for a few hours. It was absolutely amazing the difference in him when we finally turned on the air conditioning! No need for the nebulizer, rash almost gone, and no coughing!

So what exactly do we do to keep the Os-lings occupied this summer while attempting to limit heat and humidity exposure?!

Like most millennial moms, I took to Pinterest for activity ideas! Finding ideas for the girls was simple…there were so many we had a hard time choosing! DONE!

However, I quickly became discouraged looking for new and interesting ideas for L. We can’t do play-doh, slime, paint, markers, chalk, etc. due to food sourced ingredients being a part of the recipes and we had to limit outdoor activities. I scrolled and although I did find ideas, it was a lot of trial and error, a lot of thinking things through and coming up with alternative approaches and substitutions. A lot of clicking on articles for “20 best activities” to find one or two before going back to my scrolling.

Dried pasta and beans for sensory bins…nope.

Shaving cream fun…double nope.

Corn starch in homemade chalk paint…no way.

Vinegar in science experiments…no go.

Food coloring for colored water play…not happening.

Playing with spice containers and small pieces…too stressful having to worry about cleaning them well!

I realized that although L is pretty reactive and we play it safe, there were lots of other kids who were worse off. Some react to bubbles, aluminum foil, book ink and more. Before entering the terrifying world of food allergies! Did you know aluminum foil is rolled out in soy oil during production? That chalk and children’s paint may contain dairy? That markers and board book ink can contain soy? There seem to be hidden allergens all around us in forms we would never expect! As if keeping our guy safe didn’t feel stressful enough already!

So, I decided to share the list I compiled of activities for my little guy. These may be new to you or not, but they are in one place and offer fun unique “pinteresty” ideas for allergy kiddos! I know some of these materials won’t work for all allergies but it’s a start! This will be 3 parts throughout the summer, not necessarily 3 consecutive weeks, so make sure you subscribe to the blog so you don’t miss the rest!

1) Velcro Popsicle Sticks:

I love that this one can be altered in so many ways! Matching colors, adding letters for older kiddos, or just sticking and pulling apart as L enjoyed! Super simple to do, just cut velcro pieces and stick them to the ends of the sticks (on both ends and sides). I stuck them all together to start and he enjoyed pulling them all apart and then trying to figure out how to get them to stick back together.

2) Laundry Basket & Tape:

This one can easily be adapted if your kiddo can’t do tape and/or aluminum foil but for L, he needed the additional sensory component. He tends to shy away from certain textures and we are dealing with feeding aversions. Since foods are limited I try to incorporate textures in other ways whenever possible. All you need is some tape and wrap it through the holes of your laundry basket to create a web. If you’re anything like me that means dumping the clean clothes on a mountain of laundry on the couch in order to free up a basket! I used ball pit balls with some balled up aluminum foil for a new texture but anything would work! L seemed only briefly interested but my adorable goddaughter LOVED this one (shameless god mommy plug!). Try adding stuffed animals or countless other possibilities to fit your needs!

3) Pipe-cleaners & Strainer:

I made sure to scrub the h*** out of the strainer before letting him play….but I was still a nervous wreck. He hasn’t seemed to react to small cross-contamination in the past but if your kiddo does, strainers are super cheap at a dollar store. Considering this was one of his favorite activities, I would say it’s worth it! I started with a strainer with smaller sized holes and placed all of the pipe cleaners in it myself before handing it to him.

He absolutely loved pulling them all out but it was a little too tricky for him to thread them back in so we switched to our giant pasta pot’s strainer (again SCRUBBED) which had larger holes. He is always trying to figure things out and has such intent focus on mastering new tasks so this challenge kept him busy for quite a while!

4) Kitchen Whisk & Pom-poms:

I used a rarely used whisk that was scrubbed but I will probably buy a cheap silicone whisk for the future for L. I added small plastic party favor hopping frogs mostly out of necessity to keep the pom poms from falling out but he actually ended up enjoying those the most. They were more challenging for him to get out because the feet kept hooking on the edges. Although he liked this activity, he emptied the whisk quickly and then had little interest in it. This would probably be more entertaining for younger kiddos but I am thinking a larger silicone whisk with varying sized pom poms would be better for L.

5) Formula Can Slots

I don’t know about you, but we always have empty formula cans lying around! I’m sure there will be more activities with these in the future! If you don’t have formula cans any plastic container or box can be used. Hands down, this was his FAVORITE! He walked around with this little can adding toys for over an hour. I started by just cutting slits in the lid and having him place popsicle sticks in. This was too easy, so we moved to pom poms which he enjoyed so much more! We also practiced taking the lid on and off (I’m sure I will regret building this skill!). He loved it so much that he carried that can around his playroom and experimented with different toys. Some fit in the slits but most didn’t and he loved the trial and error search to find things he could collect (including clumps of dog hair and dust bunnies…eek!).

I’m excited to see what other activities we can come up with for the next two parts! I’d love to hear suggestions of things you want to see adapted for your allergy kiddos too so leave a comment if you have an idea! Don’t forget to subscribe as a follower so you don’t miss the rest of the series!

Follow our little man’s journey on his Facebook page Living La Vida Lucca: https://www.facebook.com/Living-La-Vida-Lucca-2369903016563479/?ref=bookmarks

And all of our Os-ling adventures on Instagram @Osling_chronicles

This week I spiraled.

Not quite a full tailspin, but just enough to knock me off course.

We watch our sweet L get sick often. We go to the pediatrician often. We consult with specialists often. This is our normal.

This week I had enough.

This week, I was angry.

This isn’t the normal I wanted. This isn’t the normal I expected. This isn’t the normal our 3 Os-lings deserve.

Sometimes, being told that we need frequent flier points at the pediatrician is enough comic relief to make me smile, to lighten the load of another appointment. But this week, it was almost enough to break me.

Sometimes, being told by medical professionals that our boy is a mystery to them can be taken as a compliment when I seem to understand him so well. But this week, it was daunting.

It seems we can’t go a week without a food reaction, fever, illness, infection or random GI upset. Since September he has faced over 20 fevers, most without known causes. Plus a slew of airway issues including pneumonia, bronchiolitis, and recurrent croup. He’s had a handful of double ear infections. He’s had food fails that lead to weeks of diarrhea and blood in his stool. He’s been diagnosed with reactive airway disorder since he is too young for an asthma diagnosis. He’s had medical testing and countless blood draws. He’s had hospital trips, multiple rounds of antibiotics, steroids and nebulizer treatments. For the rare week when I am not making the trip to the pediatrician, he seems to make up for it with double appointments the following week. Although I am always relieved when a test comes back normal, when another issue is ruled out, I can never quite take a deep breath. I can never quite shake the feeling that some crucial piece of the puzzle is being missed and there is something more we can do. It just can’t be normal for one little boy to be sick this much; to have so many systems in his tiny body work against him. Can it?

This past week I struggled. I struggled to face the fact that our lives aren’t always what we pictured for ourselves. That we have added complications that those around us may not understand. I struggled to explain our boy’s medical needs, repeatedly. I struggled with comments made even if they were with the best intentions. I try to be grateful for others who don’t “get it”, this just means they haven’t had to live it. I try to be grateful for the opportunity to educate others, but it is exhausting to rehash it all like a broken record. This week though, despite the smile painted on my face, I was bitter.

I was not okay.

I struggled to see the silver linings. I struggled to see the blessings. All I seemed to notice was how unfair this hand we’ve been dealt can seem.

I know in my head that as time passes, he should improve. All of the doctors have told us this and the research is there to back it up. In my heart, I dream of the day when these concerns are behind us but dread his growing up at the same time.

So this week I chose to take action. I choose to reach out to all of his medical professionals and see what else we can do. I choose to revel in little L’s sweet smile and big brown eyes. I choose to soak in his sense of humor and vibrant personality.

I choose joy.

In those moments when I feel robbed for losing these precious fleeting moments to anxiety and illnesses, I will choose to be grateful that we have him to hold and love. That we are lucky enough to have this precious boy as our son.

In those moments when I want to scream into my pillow and crawl into bed in defeat, I will choose to pick myself up, put on some music and have a dance party with our 3 crazy Os-lings.

In those moments when I feel the pull of Google and the allure of a research spiral, we will head outside to play away from screens.

Finding the silver lining is hard. It doesn’t come naturally. When you are forced to be the medical advocate for your child, you start to only see the medical issues. This week I am choosing to see beyond that. I am choosing to take our lives, our summer, our fleeting precious time back.

Our little L is so much more than his complex diagnoses and it’s time that our life is too.

Tag: asthma

But it’s a beautiful day.