As 2024 comes to a close, like many of you, I’ve been reflecting on the past year. What a journey it’s been! The year was filled with meaningful moments and challenges, and I wanted to share some highlights with you:
Memorable Moments
- We celebrated Eli’s 18th birthday and Kya’s 20th.
- Eli went to prom and graduated from high school.
- We enjoyed the last few months of hosting our Italian international student, Matteo. Saying goodbye in May was difficult, but he will always be part of our family.
- We traveled to Missouri and Illinois to visit family and friends.
- Eli began his first year of college, and Kya continued with her 3rd year.
- There are many more, but I’ll stop here for now.
Medical Milestones
- In January Eli underwent dozens of appointments for his pediatric heart transplant evaluation – our first official steps on the heart transplant journey.
- Kya had two inpatient stays due to heart failure symptoms. We managed to “bust her out” of one stay in February, just in time for the Chiefs’ Super Bowl victory! Don’t worry, she was medically stable and discharged accordingly. 😊
- Eli had another craniofacial surgery in July. Over the past 18 years, he’s undergone at least a dozen surgeries related to his cleft lip and palate, starting with his first surgery at 3 months old. Unfortunately, he’s experienced some painful and disappointing complications over the last couple of years, including a fractured jaw. However, he is nearing the end of this long-term medical treatment.
Healthcare in 2024
On average, we had 6-8 healthcare appointments each month in 2024, most of which were cardiac-related. This is pretty typical for our family over the last 6-8 years. The focus and type of treatment have varied, but it’s always been a significant time commitment. In addition to cardiac care, we add routine dental visits, orthodontic and prosthodontic work, primary care, and other health needs (like meniscus surgery and physical therapy for me this year). Needless to say, we’ve spent a lot of time in waiting rooms and with medical providers – many of whom are like family now.
Looking Ahead
As we close out the year, Eli’s transplant evaluation for the adult side of care continues and Kya will begin her own transplant-related appointments soon. Just before Christmas, Eli had a heart catheterization (heart cath), a procedure to examine his heart function. While he’s had the procedure before, this time felt more significant as we consider the transplant path. After transplant, Eli will need weekly heart caths for several weeks to monitor for signs of rejection, alongside other frequent appointments. Living within 30 minutes of the hospital is required for transplant patients for close monitoring and immediate attention from the transplant team in the event of any signs of rejection. We are thankful to live within the required proximity to the hospital and not required to relocate like many families. The exception is that if/when the transplant call comes, Eli will have to leave school. (More about life waiting for transplant in a future blog.)
Celebrations
There are special considerations and some limitations to travel regarding transplant, but this entire medical journey makes us appreciate family time together. We explored Nashville in December, with the help of expert tips from a local Nashville friend! We also traveled to Missouri to visit family and friends for the holiday. Capturing these moments is especially important.
In January, Kya will celebrate her 21st birthday and Eli will celebrate his 19th. Each birthday beyond 14 marks a significant milestone and celebration because we did not reach these with Kenny. We aren’t sad on these days, but we do have extra reason to treasure and celebrate these extra special days!
This process is truly a one-day-at-a-time journey, with countless variables and scenarios ahead. It is impossible to know IF or WHEN the transplant call may come. Remaining healthy and transplant-eligible is the focus for now.
Speaking of Birthdays
Happy early birthday to Eli and Kya!!! Don’t forget to order your Ham Fam t-shirt! Youth sizes now available! All proceeds help us reach our fundraising goal for COTA so they can support our family and families like ours. For more info about the COTA program, read Let Me Tell You About COTA. All orders will be filled after sales close on January 20 (after Kya’s and Eli’s birthdays). Free pickup in Bolivar or Springfield. Shipping options are available.
Order here: Team Ham Shirts: Softstyle Short and Long Sleeve
