Welcome to the heartwarming chronicle of Teddy's daily journey, a symphony of love, resilience, and unwavering dedication. In this two-part exploration, we invite you to step into the world of Teddy, a courageous three-year-old boy living with extreme disabilities. His day unfolds with meticulous care, tender moments, and the persistent challenges that define his extraordinary journey. Join us as we navigate through his day, witnessing the profound love and commitment that shape Teddy's daily routine.
7:00 am - Rise and Shine:
The day begins at 7:00 am as Teddy awakens to a world of love and care. The first order of business is a gentle wake-up routine, where Teddy's face is tenderly cleaned from secretions and dust. A fresh start, indeed. The essentials follow – a nappy change, ensuring his PEG feeding tube is immaculate, and warming up his special keto milk.
7:30 am - Breakfast Bliss:
With Teddy refreshed and ready for the day, it's breakfast time. Whether nestled in Mummy and Daddy's bed or perched on his favourite spot on the sofa, Teddy embarks on a delightful breakfast routine. Special keto milk flows through the feeding pump for about 30 minutes, accompanied by the administration of necessary medications through the same PEG feeding tube. It's not just a meal; it's a carefully orchestrated symphony of love and nutrition.
8:00 am - Morning Serenity:
After the nourishment, Teddy enjoys a peaceful interval to let the milk settle and the medications take effect. This is a precious time for relaxation, where the world slows down, and Teddy can find comfort in the calm of the morning.
9:00 am - Getting Ready for the Day:
As the clock strikes 9:00 am, preparations for the day ahead commence. A fresh nappy ensures Teddy's comfort, and a thorough check of the PEG feeding tube is conducted again. Teddy is then gently placed into his R82 Panda chair. Some days, he might wear his brace or Lyrica suit, both crucial in managing his scoliosis. Music takes centre stage during this period, with smooth, calming tunes filling the air. It's a sensory experience for Teddy, often marked by smiles and contented sighs, his unique way of expressing comfort.
11:00 am - Tranquil Moments:
On non-appointment days, 11:00 am is a time of tranquillity for Teddy. While he continues to relax, milk bottles and syringes are cleaned and steamed, preparing for the crucial medication routine later in the day. It's a serene interlude, allowing Teddy to bask in comfort and love.
On Appointment Days - The Big Rush:
Contrastingly, days with appointments usher in a flurry of activity. Multiple bags are packed with precision before leaving the house. One bag cradles Teddy's feed pump, another houses his ever-present suction device, and a third holds essentials like a change of clothes, nappies, meds, and a cherished cuddly toy. While appointments used to take the family to places like Leicester or Oxford, this year, most have been conveniently located in Northampton.
12:00 pm - Nourishing Noon:
Lunchtime arrives at noon, bringing with it another special keto cocktail designed to nourish Teddy. The feeding ritual takes approximately 30 minutes, with the feed pump either stationed on a stand at home or cleverly secured in a special bag attached to the back of Teddy's chair when out and about.
1:00 pm - Midday Medication:
At 1:00 pm, it's time for Teddy's midday medications, crucial components in managing his dystonia and secretions. Each dose is a step towards providing Teddy with the best possible quality of life.
1:30 pm - Stretching Session:
Following the medications, 1:30 pm marks the commencement of Teddy's stretching routine. Given his limited ability to move independently, Teddy's mummy engages in light physiotherapy. This involves building core muscles, introducing neck strength, and gently stretching out his limbs to prevent stiffness and promote flexibility. It's a tender and purposeful session aimed at enhancing Teddy's physical well-being.
3:30 pm - Cuddle Time on the Sofa:
After a session of dedicated stretching, Teddy's reward is a relaxing cuddle on the sofa. This is a special time when Teddy's vibrant personality shines through. The stretching session seems to bring out the best in him, making him more vocal and expressive. Cheeky smiles, wider eyes, and increased curiosity—these are the delightful moments that follow the hard work of physiotherapy. It's a testament to the positive impact these stretches have on Teddy's well-being.
5:00 pm - Dinner and Evening Routine:
As the evening sets in, it's time for dinner and the next round of medications. Teddy's dinner is not just a meal; it's a carefully crafted keto milkshake designed to meet his unique nutritional needs. Omega-3, approved by Teddy's dietitian, is a recent addition, aimed at potentially reducing seizure activity. While Teddy enjoys his shake, milks and meds are prepared for the following day. His milk is a precise combination of proteins, fats, vitamins, fibre, and a special keto powder. Each component is measured with care, ensuring Teddy receives the nutrition tailored to his requirements. The medication regimen is equally comprehensive, consisting of four epilepsy drugs, one for dystonia, one for digestion, one to address potential complications from the keto diet, and another to manage secretions.
6:00 pm - Pyjama Time and Evening Visitors:
As the clock strikes 6:00 pm, it's time for Teddy to don his cozy pyjamas and settle in for the evening. Evenings often bring visitors, and one of Teddy's favourite activities is the cherished cuddle time with Nanny. Teddy's smiles and comforting sighs speak volumes about the joy these moments bring. However, the departure of Nanny unveils a different side of Teddy's communication, marked by unique sounds that convey his emotions.
8:00 pm - Supper and Seizure Challenges:
Supper brings another keto milkshake, but recently, this time has been accompanied by an increase in seizures and discomfort for Teddy. Emergency medications are on hand to address any sudden escalation in seizures. Mummy or daddy cuddles serve as a comforting remedy, ensuring Teddy's well-being.
9:00 pm - Nighttime Medication and Monitoring:
At 9:00 pm, Teddy receives more medication to support him through the night. He stays up with mummy and daddy until they retire to bed. Throughout the day, Teddy's seizures have been monitored, and the evening often sees an uptick in activity. Being close to his favourite people provides a reassuring environment Teddy.
11:00 pm - Bedtime Rituals:
Teddy is gently placed into his cabin bed, designed to alleviate strain on mummy and daddy's backs. A sleep system aids in maintaining proper posture, a crucial consideration given Teddy's unique physical needs. For a while, Teddy wore hand and leg splints to ensure the proper growth of his fingers, wrists, and legs. His final medication of the day is administered, addressing concerns related to secretions.
Throughout the Night - Vigilance and Safety Measures:
The night brings a watchful vigil as Teddy is monitored via a camera. Mummy keeps a keen eye out for any significant seizures or handling difficulties with secretions. A SAT's monitor tracks his heart rate and oxygen levels, an essential precaution against SUDEP. Through the night, the safety and well-being of Teddy remain paramount.
The Unseen Struggle - Teddy's Seizures and Continuous Care
As we navigate through Teddy's daily routine, it's crucial to shed light on the unseen struggle that accompanies his journey. While the detailed breakdown provided captures the love, care, and routine that define each moment, it's important to acknowledge the relentless challenges posed by Teddy's frequent seizures.
Teddy faces an ongoing battle with seizures throughout the day, as evidenced by the 8-9 seizures witnessed within the last 45 minutes alone. The reality of his condition is underscored by the need for suction, required six times during this short period. This snapshot into Teddy's current experience is a poignant reminder that his care is indeed a 24-hour commitment, 365 days a year. Every day, Teddy confronts the unpredictable nature of his seizures, demanding constant attention, immediate response, and unwavering vigilance from his dedicated loved ones.
The heart-wrenching truth is that Teddy doesn't get a break from his condition. This three-year-old boy should be free to explore the world, revel in the simple joys of childhood, and experience the carefree moments that define early years. Instead, he faces a continuous struggle that requires an extraordinary level of care, attention, and love.
In sharing this additional perspective, we aim to raise awareness about the challenges faced by Teddy and countless others living with similar conditions. Teddy's journey is a testament to the strength of his spirit and the enduring commitment of his mummy and daddy. As we continue to follow Teddy's day, let us carry this awareness with us, recognizing the courage it takes to navigate the uncharted territory of extreme disabilities.
Conclusion: Embracing Teddy's Extraordinary Journey
As we conclude this intimate journey through Teddy’s day, we are left in awe of the remarkable strength that defines his spirit and the unwavering dedication of his mummy and daddy. Teddy's routine, spanning from the gentle morning hours to the watchful nights, serves as a poignant reminder of the extraordinary challenges faced by children like him. Yet, amidst the trials, Teddy's story is one of love triumphing over adversity, of resilience in the face of continuous struggle.
Let Teddy's journey be a beacon of inspiration, urging us to cherish the simple joys of life and recognize the strength within vulnerability. As we carry Teddy's story with us, may it foster empathy, understanding, and a renewed commitment to support those facing the unseen battles of extreme disabilities. Teddy's daily routine is not just a routine; it's a testament to the enduring power of love and the indomitable spirit of a little boy who faces each day with courage and grace.
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