I am honestly starting to think that by blogging about our parenting adventures, the universe somehow feels responsible for ensuring that I never lack writing material, because life is truly starting to feel ridiculous. Curve ball, after curve ball, after curve ball. Luckily, I am better suited at catching and handling metaphorical curve balls than the regular sport type (ask anyone who had high school gym class with me :p).
In my previous blog post, I shared about Cade’s messy, largely ineffective, puffy face, rash-inducing introduction to solid foods. Due to COVID-19, we were not able to see the allergist immediately; however, things came down to the wire last week when my frozen milk supply hit scarily scarce numbers, so I called the office. I was beyond thankful to secure an in-person appointment for the following week.
The day of the appointment, I felt more anxious than I have in a long time. Was I concerned about the results of the testing? Well sure, but that wasn’t the root of my anxiety. I WAS FREAKED TO LEAVE THE HOUSE! Last Thursday, I realized that I have developed some semblance of quarantine-induced Stockholm syndrome. I have become far too comfortable in my cozy little house bubble where routine is guaranteed and literally, no outside factors can throw off our predictable little schedule. Having an in-person appointment at EXACTLY naptime was enough to throw me into an internal tizzy! It didn’t help that Cade and I were going at this alone as only one parent was allowed to attend due to COVID restrictions. That morning, when I slogged out of bed to the sound of my 5:00 am pump alarm, I thought about all the possible scenarios that could happen to make the day work out in a reasonably painless way. Best-case scenario, Cade sleeps to the later end of his typical wake up range (which is 6:00 am to 6:45 am) and we push both naps back a bit. Naturally, he woke up at 5:30 am. On to Plan B: pray Cade has a solid morning nap, and then leave an hour early for the appointment and hope like hell that he falls asleep in the vehicle for a bit. THANKFULLY, this plan actually worked and I was able to bring a somewhat rejuvenated baby to the appointment instead of an exhausted, cranky one.
Due to the fact that the world is closed, the allergist’s office was eerily quiet (i.e. we were the only ones there besides the masked doctor, nurse, and secretary). We were immediately ushered to a small room where we met Dr. Allergist. Being the first unfamiliar human Cade has seen in two months, Cade stared at him wide-eyed while plastering his little body as close to me as possible; however, I was genuinely surprised by how quickly Cade relaxed and focused on making it his mission to steal the pen on the desk beside us while the doctor reviewed Cade’s history. He asked about Cade’s eczema (a problem that has been waxing and waning since he was born). I told him that it was currently under control but he obviously didn’t believe me as he suddenly started trying to roll up Cade’s pants (I say trying because that was not going to work). “Want me to get him undressed?” I asked with the intention of lying him down on the bed beside us. “No no, just hold him up!” the doctor replied. Umm alright? So I dangled Cade in the air and the doctor started tugging on his pants (which were tied by a drawstring that he didn’t undo). I braced myself for the crying, but Cade was a ridiculously good sport considering there was a far easier way to achieve bare leg status. After confirming that Cade was indeed, rash-free, the nurse came in with the samples and they started the test.
I held Cade’s arm down. First, they made a line of pen marks. Next, they put the allergens on the marks. Then they gave his skin a little poke on each dot to allow the allergen to penetrate the skin. And voila, easy as that! We simply had to wait a few minutes (while not allowing Cade to touch his arm) to review the results. As we waited, the nurse said, “Hopefully none of them will be positive!” I laughed. “Yeah… this kid doesn’t exactly have the best of luck when it comes to these types of things.” She looked a little confused and then glanced at his arm. “Oh…yeah… I can already see reactions”. I shifted Cade so I could see his arm too. Red bumps everywhere. Oh good.
With no further explanation to me, the nurse started furiously writing and the doctor came back into the room. “Dairy, eggs, and peanuts,” she said immediately upon his arrival. Dr. Allergist threw his head back in response and muttered, “Oh shit”. I just looked back and forth between the two of them. The nurse pointed out the largest, most obvious hive on Cade’s arm, “The worst one is the dairy.” She stood up and I watched her grab leaflet after leaflet from different sections of a folder, gathering an alarmingly large stack of relevant information.
Cade, blissfully unaware of what this all meant for him, happily played with a toy while I tried to focus on the slog of information that the nurse began throwing at me. Stand out points include:
- Nurse: “You should NEVER take him to a Chinese or Thai restaurant.”
- Nurse: “Are you planning to send him to daycare?” Me: “Uh, yes.” Nurse: “You’ll have to find an allergen free one! And even then, you don’t know what the other kids ate at home that they may bring to school and smear on the table.”
- Nurse: “Have you removed all peanut butter from your home?” Me: “Uh, no… not yet.” Nurse: “Do that. You and your husband shouldn’t eat it unless you’re not going to see Cade for six hours.”
- Nurse: “You should NEVER take him to an ice cream place… even if they have dairy free options, they may use the same scooper.”
I could feel my stress levels rise and my eyes start to tear up. The nurse didn’t notice (or pretended not to) and proceeded to go through each paper informing me of all of the things Cade cannot consume. This is where it would have been important to have Lyndon attend the appointment, because my brain was falling behind and rather than soaking in the incredibly important information like a sponge, I was having a hard time blocking the thoughts of how Cade’s already more challenging than average life just got even more difficult.
I mentally checked back in. “Go to this website where you can order pins!” the nurse told me. Huh? You can get a pin that says ‘STOP! Don’t feed me. I’m special’, she told me with an impossibly straight face. I almost laughed out loud. “Stop, don’t feed me, I’m special?” I repeated incredulously as she wrote the absurd warning down, as if I was going to forget it. How special can one boy be? I joked to myself while making a mental note to research how to make my own more appropriately worded informative buttons.
Next she pulled out an epi pen. “Has anyone shown you how to use this?” she asked me. “No, our first appointment was by phone so we have one but were never shown, just given verbal instructions,” I told her. She pulled out a practice pen and proceeded to give me a quick demonstration. “Got it!” I said automatically when she was finished. “Good… now you try,” she said and handed me the epi pen. You know those moments when you realize you actually weren’t paying attention and then get completely overwhelmed and have no idea what to do? Like when you’re introduced to someone new and realize you didn’t actually listen to their name? Or when you’re called up to the board in middle school math class and completely blank? Well, that was me. I hesitantly took the gadget and willed my brain to make sense of it. I honestly have no idea how, but somehow I managed to figure it out on the spot and not look like a complete fool with massive disregard for the safety of my child, but my goodness was it close!
Next, we discussed my most pressing issue: formula. We have two options. Soy-based formula (this was a small win as the test indicated he was not allergic to soy despite it being common to have both dairy and soy allergies) or hydrolyzed formula. I was informed that the latter is very expensive and tastes like dog food (which is often rejected by older babies with developed taste buds) so the former should be where we start. I could almost hear my husband’s eyes rolling from across town at the simple suggestion that his son should drink a soy based formula. Long story short, Lyndon has some strong feelings about soy. I braced myself for a fun conversation later.
Armed with a stack of brochures and a follow-up appointment scheduled for a blood test in six months, I walked out of the office and back to the car. Just as I was getting Cade buckled in, I heard my phone ding. I glanced down and saw my cousin’s name. I immediately felt worried as my cousin recently had a baby who was diagnosed with transposition of the great arteries. Her baby girl has been a true warrior over the past few weeks, enduring multiple heart surgeries, and I have been in awe of the tremendous strength my cousin and her husband have shown while navigating this unfathomably difficult situation. Not a day goes by that I do not think of their family and take a moment to recognize that our current obstacles are small compared to what others have to go through and feel gratitude that my son is healthy.
I parked myself in the driver’s seat and opened her text. I immediately started tearing up. This text was not about her baby girl, thank goodness. No, despite being in the most heart wrenching type of situation a parent can go through, she took the time to reach out to offer to donate her milk to Cade. She explained that she is pumping, but has no feeding date in sight. She just so happened to read my most recent blog post and thought she would see if by chance, we might need it. Up until literally five minutes ago, I would have said, “Nahhh…we’re fine, we’ll figure it out! Thanks for the gesture!” In fact, she actually isn’t the first friend to have offered to donate milk to Cade, which truly speaks to the absolutely incredible, selfless, friends that I have in my life. Until now, it honestly seemed like an absurd idea. We would just transition to formula, no big deal. I don’t need to feed my baby someone else’s milk! But I know my baby, and I am 100% certain that transitioning to formula would involve bottle refusal and many tears. That, in combination with the controversy around soy formula and the reality of navigating multiple allergies, I knew that I needed to accept this generous offer, as strange as it felt to me.
My mom became the “milk man” and delivered two huge freezer bags of milk to our door a couple days later. If I’m honest, not being able to feed Cade fully on my own anymore made me emotional. Despite wholeheartedly believing that “fed is best”, I felt sadness and guilt having to rely on someone else to ensure that my little guy was taken care of. But the logical side of me recognizes how lucky we are to have the opportunity to continue feeding Cade breast milk and I am so incredibly thankful for my cousin’s generosity.
Thank you to everyone who has sent information and recipes following my previous blog post! I must admit, I am feeling quite overwhelmed and have much to learn about this dietary restricted way of life. As my sister put it, “You just need to learn a new way of cooking!” to which I responded, “Step one: do I own a muffin tin?” If this would have happened to my sister, she would have been good to go… she’s all domesticated and such and I often graciously accept her offer to cook us things (such as muffins, because the answer is no, I do not own a mini muffin tin). But me… well you see, I’m the queen of Costco pre-made meals and have next to no cooking/baking experience! So more accurately, I need to learn how to cook in the first place. Challenge accepted, I guess! So I’ll be over here embracing my latest label: #allergymom. Thankfully, I have very quickly realized that like parents of children with limb differences, there is a whole world of supportive mamas of kiddos with allergies out there willing to help us newbies!
If you’re a resident of Saskatoon and smell smoke coming from a house in Rosewood, maybe check in on us. It could be me burning my dairy free, egg free, nut free, breakfast muffins in my new mini muffin tin.
Until next time! Xo
P.S. Since discovering Cade’s allergies, the number one question I have gotten is, “Might he grow out of them?” The answer: possibly! It is actually reasonably common for a child to grow out of a dairy or egg allergy. According to my research, between 60% – 80% can tolerate dairy or egg by the age of 16… so that is quite promising! (If I fail to think about the fact that Cade is a 1 in 40,000 type of kid in the first place). Unfortunately, it is a lot less likely for a child to grow out of a peanut allergy. Around 20% of kids outgrow peanut allergies and only 4% grow out of tree nut allergies. So we’ll keep our lucky fins and fingers crossed and like everything else, we’ll take it one step at a time!