I like plans. Plans are my favourite. It means that I know what to expect and can adequately prepare for what’s going to happen. I came from a family of planners, so I come by it honestly. In fact, my sister’s “planniness” has already rubbed off on my three-year-old niece, who has on several occasions, called me to ask, “What is your plan, Auntie?” I hope that Cade falls somewhere nicely in between Lyndon and my levels of planniness (i.e. plan nothing vs. plan everything). Yes, somewhere in the middle seems healthy.
None of us planned for COVID-19 to send us all into isolation. I certainly didn’t plan for my baby to interact only with his parents for several months. I did not plan for him to be limited to the rooms in our house for months on end. I did not plan to lose all in-person support from my friends and family as I navigated new motherhood. I could go on and on about how my best laid plans have been turned on their head from the moment we decided to have a baby until now… Honestly, at this point, all I can really do is laugh. Let’s throw a global pandemic into the mix, mere months after you gave birth to a baby with fairly unique medical needs. Cool, thanks, universe. Alas, I must take some of my own advice. 1) Do not borrow worry; 2) I will not be given more than I can handle; 3) Facing challenges can bring you down or give you an opportunity to gain wisdom and strength. So, in regards to Cade’s medical journey, here is the latest…
Last week we had a phone appointment with Cade’s orthopedic surgeon…
The Plan (prior to last week): At six months of age, Cade was to begin five weeks of casting followed by a surgical procedure to correct the position of the oblique talus bone in his right foot. Heal. Wait and see if his foot can bear weight.
The Reality: “So I reviewed Cade’s x-rays again,” Dr. Ortho told me after a quick discussion about his development over the last few months, “and I don’t think that we are going to do casting.” WHAT?! “I showed his x-rays to some foot specialists in larger centers and in the last picture, his talus does not look oblique,” she explained. HUH??? “So no casting… just the surgery?” I asked, dumbfounded. “Uh no… no surgery either,” she answered. “I now think the best plan of action is to wait and see how he uses his foot just as it is.” I willed my brain to process faster. Since Cade was born, we have been told a few different things. First, that he had a vertical talus, then that he had an oblique talus… either way, casting and surgery was a given. Now he just has a talus? I’m confused. Dr. Ortho picked up on my hesitation. “Would it help if I looked at his foot over video chat?” she asked me. Definitely. I suggested that I take some pictures and videos for her rather than trying to manipulate the monkey’s foot while on Facetime, as I knew cooperation was unlikely. A few hours later, upon reviewing my footage, she called back and said, “It looks pretty good!” Well alrighty then! We gave her permission to share the pictures with her colleagues but she reiterated that she feels the appropriate plan is to wait and see. Best-case scenario, he would require shoe inserts to enhance stability. I assume the worst-case scenario remains as is, but I didn’t bother going there.
The New Plan: Nothing. When we are no longer bound by the rules of social distancing, we are to make an in-person appointment with her. Otherwise, we shall continue watching our little man navigate the world with the body that he was born with! Look at that… a plan actually changed for the better!
A few days later, my phone rang unexpectedly. It was Dr. Ortho again! “Is now a good time?” she asked me. ‘Oh no, it was too good to be true!’ I thought to myself instantly. “So I showed another foot specialist the pictures and videos you sent,” she started. I braced myself for bad news, “and she agrees that casting and surgery is not the route that should be taken.” PHEW! No bad news after all! “She did, however, suggest a different possible explanation for his differences.” You have my attention. She went on to tell me that this specialist believes that Cade presents with a variant of fibular hemimelia. “I didn’t think of it myself because Cade’s right fibula is present and looks to be the same size as the left,” Dr. Ortho explained. Google later told me that fibular hemimelia “is a birth defect where part or all of the fibular bone is missing, as well as associated limb length discrepancy, foot deformities, and knee deformities.” To be completely honest, I’m not sure what to make of this. To me, it sounds like Cade has fibular hemimelia minus the fibula difference, limb length discrepancy, and knee deformity… so just a foot deformity (lol). The doctor said that we will have to watch his growth because it is possible that his legs may grow to be different lengths. I asked a few questions and she reiterated some of the information we already knew… Kids with four rays (i.e. sequences of bones throughout their foot) tend to be able to use the foot. Kids with three rays tend to require amputation and a prosthetic as the foot cannot bear weight. Cade has three and a half rays BUT she dropped a new “ray” of hope (hehehe pun intended!)… Cade’s bones are still cartilaginous which means that it is still possible that his “half ray” will turn into something more substantial, potentially bumping up Cade’s “ray count” and likelihood that the foot is usable. She also said that she thinks it’s positive that the first and second ray are fused together because it gives him more of a platform. Long story short, there is certainly hope that Cade will be able to use his foot and finding cute orthopedic shoes will be my biggest concern ;). As far as this new potential explanation, I remain unphased. I truly believe that Cade will never fit perfectly into a box, and that is just fine! What matters is what we’re going to do to support him!
I wish I could end the blog post here, but alas, there is never a dull moment, and we’ve recently added a brand new specialist to Cade’s repertoire of doctors!
When Cade hit six months, I tentatively delved into the world of introducing solid foods. I attended a workshop (back when we could be around other people) and learned all about the different ways to start this “exciting” new chapter (I put “exciting” in quotation marks because I think a more appropriate word would be “challenging”… but that’s not the word they used in the advertisement).
The Plan (prior to beginning solids): Utilize the baby led weaning approach (i.e. giving him soft, finger-sized chunks of whole foods for him to pick up by himself and consume). Introduce allergens right off the bat to prevent/rule out any allergies. Watch Cade discover the wonderful world of food!
The kid blew up like a balloon. First, it was cheese. Allow me to rewind…
In a not so intelligent parenting move, we gave Cade a stick of soft mozzarella before bed one night. When laying him down for bed, I said to Lyndon, “Do his eyes look really red to you?” We stared at him intently and decided that his red eyes were not really too unusual given that he was tired and kept rubbing them, so we put him to bed. In the morning, he seemed fine. Phew, just me being overly crazy. We gave him another stick of cheese the following day. This time there was no mistaking it. Our sweet little man got all red and blotchy, and his eyes swelled. “OMG, WHAT DO WE DO?!” I shrieked. I called my sister whose youngest daughter has allergies. “Give him Benadryl!” she told us. In a second not so intelligent parenting move, I realized that we did not actually own baby Benadryl. “GO TO SHOPPERS NOW!” I ordered Lyndon, basically kicking him out the door. Luckily, we live very close to the drug store so within a few minutes, we had allergy medication and managed to get some into a balloony looking Cade. Thankfully, he was not showing signs of breathing difficulties. Two doses of Benadryl, several hours, and many cuddles later, Cade deflated and began to act like himself again.
Cade saw a doctor right after the incident (unfortunately, not our regular doctor) and she advised us to continue to explore food and introduce allergens one at a time, while steering clear of dairy for awhile. We anxiously did just that, and surprisingly, the next couple weeks went smoothly! So smoothly that we started to wonder if his reaction only occurred because he was battling an eczema outbreak at the time. We tentatively decided to try a few dairy adjacent products… butter, then plain yogurt. To our surprise, both went fine! Now, I must point out here that when I say things like “try” or “eat” I really mean “pick up, lick, make a disgusted face, and throw on the floor,” but whatever.
Just as I thought we were in the clear, it happened again. I gave Cade peanut butter on a rice husk thingy. This was the fourth time he had peanut butter, so I thought nothing of it. Almost immediately, his face got blotchy and swollen and he got hives on his hands. Much to his extreme dislike, we managed to get some Benadryl into him again and things did not progress, but he was still not looking quite like his cute self the next morning. In stupid parenting move what is starting to feel like one thousand, I gave him some eggs for breakfast. Now again, Cade has had eggs before! But it is technically one of the “big eight” allergens so I should have known better. What was deflating began inflating once again. So much for the dozen egg bites his dad just made him for a convenient breakfast option.
We were able to have a phone conversation with our family doctor within a few days and she sent a referral to the allergist. I wondered if multiple food allergies would constitute an “essential” medical service. Turns out, not; however, to my surprise, Dr. Allergist called us within the hour! “That was speedy!” I remarked gratefully. “He’s a baby! I take babies very seriously, young lady” he told me warmly. Young lady? Hehe… I liked this guy. He proceeded to gather Cade’s food history over the phone and told me that while he is not currently seeing patients, Cade will be at the top of the list the moment he has the go ahead, given that he is so young and has reacted to multiple allergens. “The kid has to eat!” he told me. Agreed. Which brought me to the next problem. Those of you who are well acquainted with our journey will know that I am an exclusive pumper (despite my never-ending disdain for the process). Unfortunately, I am no longer able to pump enough milk to meet Cade’s intake, so every day I thaw eight or so ounces of precious frozen milk that I stocked up at the beginning of my pumping adventure. But those bags of liquid gold are dwindling, which means that we will have to start supplementing with formula soon. And while I had zero issue with this impending switch prior to his reactions, the word “formula” now may as well be used interchangeably with “poison that will likely hurt him” in my books. Who knows what he will be able to tolerate versus what he will react to, never mind what he will actually willingly consume! What the doctor said next was music to my ears and I am beyond thankful. “I will make an exception,” he told me. As long as neither of us have symptoms, before I run out of milk, I am to contact Dr. Allergy and he will see Cade even if the restrictions have yet to be lifted. He will test him and we can give him formula in office in case the worst happens.
Armed with that plan, our current adventure simply involves attempting to feed Cade in general. Last week, while Cade napped, I went to the grocery store and I left Lyndon with the task of researching baby led weaning friendly recipes that do not include nuts, dairy, or eggs. When I came home, Lyndon was in a mood. He huffed about the house until I asked him what was up. “I watched this video!” he started, “It was of this cool-looking hipster mom, with her perfect husband, and her perfect house, and her perfect baby named THEOOOODOOOREE who has big brown eyes and two hands, and eats everything she puts in front of him!” I burst out laughing. Welcome to “mom world” where you research something and immediately feel like a complete and utter failure… and also ugly because why are all these influencers wearing makeup and do their babies not grab their hair and yank it when it’s down?! My curiosity got the best of me and I made him pull up the video that had caused such a grand level of discouragement in my husband. I cannot lie, I saw why he felt that way. We both watched this Theodore character grab the broccoli in front of him, put it in his mouth, chew, and swallow. We’re lucky if Cade licks a vegetable. “At least he’s bald,” Lyndon retorted. Ha! For those of you who may be wondering why we don’t try the traditional puree approach, let me assure you, we have. We continued watching the video. When Theodore was presented with a spoon, he willingly opened his mouth and ate the food. We looked at each other. You mean all babies don’t close their lips tightly and shake their head back and forth gluing it to the back of the highchair in order to get as far away from the clearly grotesque puree as possible? Cool.
So anywho, that about sums up our world for now! Taking any and all suggestions for nut free, dairy free, egg free meal options LOL! On an unrelated note, also taking suggestions for types of shoes that may work for Cade! Up until this point, I have avoided this issue by simply dressing him in socks that have “shoes” drawn on them haha! But alas, now that we will be avoiding casting, I should probably buy the kid some footwear. So if anyone knows of comfortable baby shoes that secure around the ankle or don’t break the bank because we likely have to get two different sizes, that would be excellent. Ah, sometimes I marvel at this crazy life we lead.
Stay safe, all! Until next time! xo