Things Have Been Hard – 2021

This post I actually began writing in December of 2021, but as you can tell, the title hints that things have been hard. It is now spring of 2022, but I feel this 2021 recap that I started and never finished until now deserves its place in the digital archives…

*rewind*

As 2021 comes to an end, I have been reflecting on this past year. The pandemic aside, this year has been the hardest year of my life. As Mike and I were trying to navigate being first-time parents, our life was flipped upside down with Piper’s medical news. In January, Piper began having issues with breastfeeding, after doing so well her first three months of life. I assumed it was a supply issue, but after some lactation counseling, it was evident that Piper was the one having the issue, not me. That began our journey in Feeding Therapy, as well as a discovery brain MRI. The MRI findings showed a severely abnormal brain makeup. Piper’s muscle tone and lack of hitting basic milestones threw us into Physical and Occupational Therapies. The doctors appointments began piling on. Video swallow studies showed Piper would need a g-tube placed in the very near future. Initial visits with ophthalmology, audiology, an ENT, another ENT because I wasn’t happy with the first one, a prescription for a cranial helmet to lessen the severity of her flat spot she had developed due partly to lack of mobility, a referral for AFOs (orthotics). And the list goes on. All of this was happening while Mike and I were trying to balance all of our adult responsibilities, working full time, making time for family and friends, relaxing and making time for ourselves and each other, enrolling in therapy because that was obviously needed, and oh, don’t forget, trying to not bring Covid-19 home. It may be the largest understatement ever to say that this year was a lot.

Now don’t get me wrong, we also experienced a lot of joy in 2021 – so much joy that it is worth documenting here. Although our life seemed a bit blurry and sad due to the diagnosis, we had a kick-butt summer. We visited Colorado in May with some of our best friends from college, rented a lake house with my family for a week, spent lots of time at Mike’s parents’ new cottage, visited the U.P. with the O’Connor side in July, spent our first night away from Piper at a Keith Urban concert, celebrated Piper’s first birthday, and even snuck in a four year anniversary trip to Maine in September (thanks Mimi and Papa for babysitting)!

Prior to our trip to Maine, we met with Piper’s new metabolic team of specialists, which consisted of another neurologist, a dietician, and a metabolic geneticist. This specific team specializes in assisting kids’ transition to the ketogenic diet. Due to Piper’s metabolic condition and the way her body processes sugar, the ketogenic diet is truly the best route for her. (I will spare you all of the scientific details because there is just too much other content to cover here.) The ketogenic diet is commonly used as the first line of defense against seizure activity in kiddos, if it is a feasible option. It has been proven to reduce or eliminate seizures in a large percentage of individuals, although doctors and scientists don’t fully understand why.

Now, you might remember from my last post that we were feeling very thankful because Piper wasn’t experiencing seizures. Or so we thought. After meeting with the neurologist, she educated us on how seizures can present themselves in many subtle ways. Piper exhibited what we thought was the newborn ‘startle reflex,’ but her neurologist explained that it was possibly seizure activity, and that an EEG would be needed to confirm. I felt like a failure. I felt so unprepared and uneducated in what I was supposed to be looking for in regards to seizures. I had this idea in my mind of how you see seizures portrayed on tv, but learned that sometimes a seizure can be happening under the surface with the only outside indicator being something extremely subtle, such as a startle or an eye twitch.

So with this information, we scheduled the inpatient stay at the children’s hospital to get started on the ketogenic diet in September. The medical team wanted Piper admitted for an entire week to begin keto in order to fully monitor how she was tolerating everything, and to hone in on what exact ratio (fat to protein) would be needed to level out her urine ketones and blood panels. (Again, trying to avoid the medical ‘weeds’ here.) The week went fairly smooth, slowly increasing the ratio everyday and seeing her tolerate the food perfectly well. Toward the end of our stay, Piper began having bouts of fussiness that were unexplainable. We went home because everything looked fine, but this started a full month of constant fussiness and crying. We’re talking full-on crying every single day from 3:30 until 8:30 when we could finally get her calmed down to go to sleep. With this new diet, she had been started on a few new medicines and supplements, so we were trying to temporarily remove one thing at a time to determine the cause of her pain. It was excruciating and I was calling our dietician almost every other day begging for another thing to try. Finally, we decided to switch her food recipe completely (for the second time during this month). Piper had been on a medical prescription formula, and her dietician suggested a blended diet of real food we could cook her at home. After switching Piper to this, it was like a light switch had been flipped. She was no longer fussy and her demeanor was back to normal! We were so thankful. Her stomach must have not agreed with something in the medical formula, but because she wasn’t having an issue with vomiting, we did not know that was the culprit.

Now, while we were inpatient at the hospital, we also had Piper’s first EEG done. It came back showing infantile spasms and abnormal background noise. The infantile spasms were the ‘startles’ we had been seeing but thought were nothing. Mike and I were sad, but we had suspected this after our prior conversation with the neurologist. Doctors wanted to wait a couple of weeks to see if the keto diet made an impact, which it did not, so we began our journey with seizures medications. We were actually able to get the infantile spasms under control pretty quickly with the first medication we tried.

During this ketogenic journey, we were making gains in other areas. Piper graduated out of her cranial helmet, started working with a Visual Therapist, and was doing really great with Physical Therapy. We got lots of new medical equipment for her – a bath seat, a stander, and two seats for general use around the house. Piper continued working on standing in her stander, which is super important for kiddos that are not mobile. Standing helps to develop her hip sockets, bone and foot growth, digestion, and many other things.

We rounded year out with limited holiday get-togethers, and then a Covid cherry on top when I got sick in mid December. We shipped Piper away with Mimi and Papa while Mike stayed home to cook meals for me while I quarantined in the guest bedroom for over a week. Thankfully no one caught Covid from me, but the upcoming winter months brought a revolving door of illnesses to the O’Connor Household. That’ll be covered in the next post…which might as well be titled ‘Things are Still Hard.’