Welcome to Kidlets & Coffee! For those who have been here before, welcome back!
It’s been a while since I have updated here, so I thought a “Reintroduction” would be helpful. So get ready to meet our crew!
We are The Parents. We met in Germany while we were both in the Army. We found out later that our lives had been intertwined for quite some time, we just didn’t know it yet. I got out of the Army after we got married and had our first kidlet. He stayed in the Army until after our third kidlet was born. We have moved, and settled, and established our “normal”. We face the chaos with humor and take life as it comes.
Lil Bird (LB) is our first miracle kidlet. She was born prematurely and growth restricted (IUGR), born at 35 weeks 2 days gestation, weighing 3 lbs 14 oz. She stayed in the Neonatal Intensive Care Unit (NICU) for 19 days before coming home for the first time. She’s had a few hospital stays since birth but overcomes it all with a smile. She’s spent years in physical therapy (PT) and occupational therapy (OT) learning skills that most of us learn naturally, as well as catching her nervous system up to the level of her peers. She is thriving and loves writing, reading, music, and video games. She is creative and funny, with a wicked sense of humor that keeps us on our toes.
Medically, she faces or has faced:
Premature birth
Intrauterine Growth Restriction (IUGR)
Small for Gestational Age (SGA)
Hole in her heart related to prematurity (resolved on its own)
Asthma
Anxiety
Vocal Cord Dysfunction (VCD)
Growth restrictions (resolved, was due to the inhaler she was on)
She has seen or is currently seen by:
Neonatologist
Pulmonologist
Cardiologist
Occupational therapist
Physical therapist
Endocrinologist
Speech therapist
Lil Ninja (LN) is our second miracle kidlet. He was also born prematurely and growth restricted, although we were less surprised by that point. He was born at 35 weeks 5 days gestation, and weighed 4 lbs 3 oz. He did not have a NICU stay, and came home at less than 4 lbs. We had to borrow a car bed from the NICU! He did not fit in a regular car seat. You would never know that looking at him now though! He spent the first several months of his life shaking, which we now know was due to his immature nervous system being overloaded by life. He had several years of unknown gastrointestinal and growth issues that he, thankfully, has outgrown. He is now an incredible young man with an empathetic nature that is unmatched. His compassion for others shines through, and he often can be found helping kidlets at the local Special Olympics. He loves video games, helping others, and learning every detail of whatever catches his interest.
Medically, he faces or has faced:
Premature birth
Intrauterine Growth Restriction (IUGR)
Small for Gestational Age (SGA)
Severe Attention Deficit Hyperactivity Disorder (ADHD)
Mild Autism Spectrum Disorder (ASD)
Severe color vision deficiency (CVD, or color blindness)
Sensory Processing Disorder (SPD)
Dermatographia (“Skin writing”)
Digestive disruption (unknown inability to eat and process food, resolved after years of testing and elemental formulas)
“Funky” heart murmur (resolved, and yes that is exactly how it was described by cardiology)
Abnormal lymph nodes
Auditory Processing Disorder (APD)
He has seen or is currently seen by:
Occupational therapist
Speech therapist
Psychologist
Gastroenterologist
Cardiologist
Dermatologist
Allergist
Ear/Nose/Throat surgeon
Audiologist
Ophthalmologist
Lil Koala (LK) is our third miracle kidlet. She was also born prematurely and growth restricted. She was born at 35 weeks 1 day gestation, weighing 3 lbs 15 oz. She spent 11 days in the Neonatal Intensive Care Unit (NICU) before coming home with us. She did come home on oxygen due to her underdeveloped lungs but thankfully outgrew the need after a few months. She needed a little bit of help from physical therapy to catch up with her peers, but she is a fighter and has been since before she was born. She is strong willed, compassionate, loving, and hilarious. She enjoys drawing, writing, reading, crochet, and other crafty past times. She also enjoys playing video games with her siblings.
Medically, she faces or has faced:
Premature birth
Intrauterine Growth Restriction (IUGR)
Small for Gestational Age (SGA)
Underdeveloped lungs
Reactive arthritis in her knees
Gastrointestinal upset
Sensory Processing Disorder (SPD)
Clogged tear ducts
She has seen or is currently seen by:
Physical therapist
Pulmonologist
Rheumatologist
Gastroenterologist
Ophthalmologist
Lil Unicorn (LU) is our fourth miracle kidlet. She changed the game completely by being born FULL TERM and larger than the rest. She was born at 39 weeks gestation and weighed 5 lbs 1 oz. We learned later that she displayed some concerning symptoms at birth, but we as her parents did not know that yet. As far as we knew, she was perfectly healthy. Around 6 months of age, her pediatrician sent us over to the gastrointestinal team to find out why she wasn’t growing well. She was admitted to the hospital for testing and she did not give any obvious answers for anyone. She was happy, content, and loved to eat and that did not match her lack of growth. The only thing that could be nailed down was that she was volume sensitive, meaning she could not eat more than 2 ounces of anything at a time without throwing it all up. That led her getting a g-tube (feeding tube) surgically placed to allow us to give her formula over longer periods of time, lowering the strain on her belly and GI system. Since then, we have spent years attempting to track down the overall cause of her challenges, yet most of what we have succeeded at is documenting more symptoms with very few reasons why. Through it all, she remains strong, stubborn, and determined to face challenges head on. She is smart, wickedly funny, and not afraid to share her opinion with anyone and everyone. She loves crafts, writing stories, and playing video games with her siblings. She is creative, compassionate, and loving.
Medically, she faces or has faced:
Gastroparesis
Weak immune system
Unknown sleep disorder
Abdominophrenic Dyssynergia
Aerophagia
Low muscle tone
Easily fatigued
Retained primitive reflexes
And more
She has seen or is currently seen by:
Gastroenterology
Neurogastroenterology
Pulmonology
Sleep Specialists
Orthopedics
Orthotists
Neurology
Nutritionists
Physical therapists
Occupational therapists
Pediatric Surgery
Genetics/Metabolics
Audiology
Physical Medicine/Rehabilitative Medicine
Developmental Pediatrics
Ophthalmology
Overall, our lives are full of love and humor. We face our challenges head on as a family. We stand together and pick each other up when we fall (I am very clumsy, so there is a lot of falling). We, as The Parents, are so proud of our kidlets and take great joy in watching them grow into the amazing humans they are.
Our “normal” may not look like yours, but we are a family just like any other. We have good days and bad, sickness and health, challenges and achievements.
I share our journey to not only bring awareness to many things, but also to let other families that may be going through similar challenges know that they are not alone. I am a firm believer in advocating, and I have had to learn how to be the squeaky wheel that is heard. I know I am not the only one, and I know how helpful it can be to see that others have been there, done that, and come out on the other side.
We are here for advocacy, awareness, and support. And also to share a bit of our shenanigans with the world. I hope we can make you smile, make you laugh, and maybe broaden your worldly view a little.
Welcome to Kidlets and Coffee! We’re glad you’re here! Grab some coffee or Red Bull and enjoy your visit.
