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This Ain’t Our First Rodeo

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The First Endocrinology Appointment

On March 15th, we had our first appointment with Kennedy’s Endocrinologist. It was nerve-wracking because it marked the beginning of a lifelong journey of Endocrinology appointments every three months. Dr. Matalka, her Endocrinologist, was located at Children’s in Birmingham. After we signed in, we went straight to the lab to get Kennedy’s A1C levels, which measure blood sugar levels over three months. It didn’t worry us too much since we’d only been diagnosed a month before.

‘We knew that we had a long way to go to get Kennedy back to full health. When we were called in, we spoke with our nurse, nurse practitioner, and Dr. Matalka. They were all impressed with Kennedy’s progress. In just a month, her A1C levels had dropped from 14+ in the hospital to 11.2. They all agreed that Kennedy was prepared for the CGM (continuous glucose meter).

We selected the Dexcom G6 because our eventual goal was to move to the pump, Omnipod 5, which reads the G6. We had a teaching nurse come in to educate us on how to use the Dexcom, and it was overwhelming for us. However, Kennedy was elated and relieved that she didn’t have to be finger-poked constantly anymore.

A Night at the SLE Miracle Rodeo

Through Facebook, we connected with another local family whose son also had Type One diabetes. His mother has a fantastic blog called Sugar Rush Survivors and told us about a free event happening that evening in Montgomery that Kennedy could attend. The SLE Miracle Rodeo was a private event exclusively for those with long-term illnesses, disabilities, or challenges.

We were thrilled for the opportunity to celebrate how much Kennedy had progressed in just a month. We arrived back in Montgomery just in time for the rodeo, and it was amazing. Kennedy received many words of encouragement from everyone who had made the event possible.

Other Early Medical Issues

As I looked around the SLE Miracle Rodeo arena that evening, my heart felt heavy as I saw families, like ours, carrying their own crosses and dealing with lifelong trials for various illnesses and conditions that their children would have to endure. It made me reflect on the eleven years we have been blessed with Kennedy and how much she has been through, facing everything with grace and boldness.

When Kennedy was just a few months old, we found out through her regular pediatrician visits that she had a heart murmur. We visited a cardiologist who confirmed the diagnosis. This was our first “heart issue,” and we quickly learned that many people live normal, healthy lives with murmurs. Kennedy’s murmur was harmless and didn’t require treatment, just continued monitoring throughout her childhood.

After moving to a new area, we started seeing a new pediatrician who was concerned about some of Kennedy’s symptoms, such as difficulty speaking, sensory issues, and trouble swallowing. We were referred to speech therapy and occupational therapy, which helped immensely. We learned that Kennedy had Sensory Processing Disorder (SPD) and would need to continue both therapies.

It was a relief to finally have a direction for helping Kennedy reach her milestones and not feel like we were going crazy trying to figure out why she wasn’t meeting them. Therapy helped Kennedy learn how to swallow, a huge win for all of us.

During therapy, the therapist was concerned that Kennedy might have Apraxia of speech (AOS), a speech sound disorder. We also had concerns about Kennedy blanking out or not making eye contact. Our pediatrician recommended an EEG, which revealed that Kennedy was having irregular brain activity and was having absence seizures, brief lapses in consciousness where a person stares blankly into space for a few seconds.

Luckily for us, she experienced most of these seizures at night, and they could be up to thirty at any given time. We had to make an appointment with a behavioral neurologist, and the hope was that Kennedy would grow out of it by adulthood. We were also educated on what to do in case of a grand mal seizure requiring emergency services. I couldn’t help but worry about her constantly, but looking back, it helped us be better prepared.

Another Diagnosis to add to the List

During this time, we also had a referral to a local cardiologist to check on Kennedy’s heart murmur. However, the checkup revealed something shocking – Kennedy had a hole in her heart! An atrial septal defect (ASD) is a congenital heart defect where there is a hole in the heart’s upper chambers (atria), increasing blood flow to the lungs. We were told she would need close monitoring every other year.

So, at this point, we had a heart murmur, SPD, AOS, absence seizures, and now a hole in Kennedy’s heart. It was overwhelming, but we knew it was all manageable. Therapy and patience were our top priorities at the time, and we were always cautious about the seizures’ effects on her brain. We worried about the possibility of her experiencing grand mal seizures and what her future would look like with learning disabilities.

New Normal and Homeschooling

For a few years, we settled into our new normal with Kennedy’s various conditions. She had strep throat over ten times throughout a year and needed to have her tonsils and adenoids removed. She even had a busted eardrum and didn’t complain once, and then she broke her foot while jumping on the trampoline. We considered all of these to be normal kids’ things that just happened, and we knew we could handle them all.

A Family Commitment to Health

During this time, Kennedy started kindergarten, but her SPD, anxiety, and confusion made it difficult for her to tolerate public school. We tried to push through, but after less than a month in first grade, we began homeschooling all three of our children. While overwhelming at first, we found a great faith-based curriculum that worked well for us. However, despite accommodating her needs, we were still concerned about Kennedy’s learning progress.

Then, Covid hit, and everything came to a halt. We knew our concerns could wait, and we focused on dieting and exercise as a family in 2022. We all started intermittent fasting and counting our macros to get healthier.

We had her cardiology appointment in October and were told her hole had closed! Oh, we were just so overwhelmed and excited, finally something we could check off the list. Kennedy had been experiencing chest pain, but we were cleared by her cardiologist that it was nothing to do with her heart.

Kennedy also started losing weight, which we attributed to the lifestyle change and growing pains. But when she fell severely ill, we took her to the pediatrician and discovered that she had Type One Diabetes.

Despite all the challenges we faced, we remained hopeful and determined to help Kennedy manage her condition. We knew it would be a long road ahead, but we were ready to handle it because we had been through so much already.

As we continue this journey, we will delve more deeply into Kennedy’s medical diagnoses and challenges. Along with Type One Diabetes, we will share our brand-new diagnoses with anxiety, depression, autism, ADHD, and dyslexia. We hope that by sharing our story, we can help others who may be going through similar struggles and offer hope and support to those who need it most. Please stay tuned for more updates on our journey.

Jen

Jen

Kennedy's Mom!

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