The Little Life

There are many different families, with many different quirks, but you have never met one like this before. Enjoy our story as I blog daily about the life of the Little Family. Watch, read, and listen daily to a story about a Single Mother raising her 3 children with cerebral palsy. Enjoy our story as you travel with us for the next 365 days on a road full of challenges and what I call “you rock” moments while we live a life full of love and devotion to God and one another!

Meet The Littles

The Mom:

Taylor

Taylor is 17 years old. She was born on December 21^st, 1992. Her original due date was April 1^st. She was born at 24 weeks gestation and weighed 1 1b 12 oz. Due to being born so premature she experienced a grade IV bleed on both sides of her brain. After one month old she developed hydrocephalus on the brain. The bleed on her brain prevented the fluid to pass through her brain, which caused her to have a VP shunt implanted in order to allow the fluid to pass through her body. She also experienced seizures, frequent infections, jaundice, and was on oxygen for the first 2 ½ months. Due to all the complications Taylor was in the hospital for 5 months and the Doctor’s told me she would never walk, talk, and be fully dependent on an adult for the rest of her life and that if she demonstrates some what of a smile then that would be a miracle. During her first 5 months of life. Taylor experienced four shunt surgeries. Due to the length she was on oxygen she experienced ROP (Retinopathy of Prematurity) with her eyes, which required her to have surgery on both of her eyes to prevent her from becoming blind.

At age two, after many cat scans & MRIs the Neurologist discovered that Taylor was missing her Corpus Collosum (the pathway between both sides of her brain). Due to the damage that occurred in her brain, Taylor’s body began to go through early puberity (Purcosious Puberty). At age 9, Taylor began to have botox treatments on a regular basis into her hamstrings and her right arm every 6 months for the next few years. At age 13, Taylor had an adductor release, and had a femoral derotation osteotomy. At age 16, Taylor became very ill with severe headaches, which caused her to be hospitalized on/off for two months. She then had her VP shunt revised/replaced.

The normal milestones as far as talking, walking, potty training, etc… always came later in life. I was told if Taylor didn’t talk by age 4 then she would never talk. She began to talk when she was 5. I was told she would never walk, and she walked when she was 7. She toileted independently at age 6 ½. In the past we experienced extreme challenges with her behaviors and in the past year her behavior has improved drastically.

Since VERY early on Taylor received Physical Therapy, Occupational Therapy, Speech Therapy, Hippotherapy, Early Intervention Services, wore DAFOs (leg braces) most of her life, and was fully integrated in school with support until 6^th grade.

To say the last 17 years have been easy would be a complete lie. We have climbed up some huge mountains…we have had challenges throughout all stages of development and have experienced extreme challenges with negative behaviors, motor skills, speech/language, academics, amongst other areas. AND we have experienced great gains in those areas as well.

Taylor is a funny girl. She loves to be around people, loves photography, loves music, loves her church, and loves God. She loves life and makes a difference everywhere she goes.

Jorden

Jorden is 12 years old. He is the twin brother to Erin. He was born on April 30, 1997.  The twins were originally supposed to be born on August 18^th.  They were both born at 24 weeks gestation, and Jorden weighed in at a whopping 1lb 15 oz. He was the first to be delivered by normal birth. The following day after birth, he had an ultra sound done on his brain to find that he experienced a grade bleed on his brain that was labeled as a grade III bleed. (1 being least severe to 4 being most severe). Jorden experienced many different challenges the first couple months of life such as difficulty breathing, jaundice, and also was diagnosed with ROP (retinopothy of prematurity in both of his eyes) He was on oxygen for nearly 1 1/2 months. The first couple of months in the Neonatal intensive care unit Jorden had a couple different surgeries such as: a bilateral hernia removed, laser surgery on both of his eyes due to the ROP, and one of his main veins in his arm grew around his main I.V pick line which caused the Doctor’s to go in and remove the I.V line by surgery, which caused the entire vein to removed. (I have been told that this is something that hardly ever happens). Jorden was in the NICU for nearly the first 2-½ months of his life. He was sent home using a heart and breathing monitor for the next 6 months of his life.

Around 5-6 months of age, Jorden developed acid reflux, which caused him to have difficulty eating or holding any food down. He would often vomit after every feeding. This caused his bones to become demineralized, which then caused him to have brittle bones. At roughly 6 months of age, both of Jorden’s legs broke due to lack of nutrients and his legs. Due to being on oxygen at an early age, Jorden developed lung challenges and became asthmatic. Therefore, he continues to have frequent breathing treatments using the nebulizer or an inhaler.

Jorden has worn glasses since one and half years of age and has been under the care of a specialist for his vision. At age 8, Jorden’s retina in his left eye became detached which caused the loss of vision in that eye. At that time, his right eye required surgery to prevent retina detachment. At age 9, Jorden required another surgery on his right eye due to suspicion of the retina detaching. At age 12 (one month ago) he had a follow up surgery to remove a cataract in his left eye that was developed due the retina being re-attached.

Jorden began walking at age 1-1/2 years of age. He began talking about the same time, and was always extremely verbal. He had botox injections in his left hamstring due to walking on his toes. AND he continues to wear a night  brace in order to stretch his hamstring.

Jorden has received Physical Therapy, Occupational Therapy until he was about 7 years of age. He received Speech Therapy due to feeding/sensory issues until he was also 7. As similar to his sisters he received Early Intervention Services since birth and wore a DAFO (leg brace) on his left foot, due to toe walking. His left foot is where his cerebral palsy has been most prevelant. He has been fully integrated in the General Education curriculum for all of his life with limited and now requires no support.

Jorden is an amazing young man, who adores his family. He has a passion for God that is rare to find at such a young age. He loves video games, computers, loves to listen to music, and loves to play the drums. Jorden, like the rest of his family loves being around others and loves being included. He is a delight and is a blessing to know!

Erin

Erin is 12 years old. She is the twin sister to Jorden. She was born on April 30, 1997.  They were originally supposed to be born on August 18^th.  She was born at 24 weeks gestation, weighing 1 1b and 11 oz. Erin was born second and was delivered breech. Like Taylor, Erin also experienced a grade IV bleed on her brain (1 being least severe to 4 being most severe). She experienced difficulty breathing, jaundice, and also was diagnosed with ROP (retinopothy of prematurit) She was on oxygen for nearly 2 months and was jaundice. Erin was in the hospital for nearly 3 months. Overall, Erin did well during this time for a baby who was as small as she was. She required no surgeries, no seizures, or no other complications at this time.

When young, Erin was always the healthiest out of all three of my children. She rarely ever was sick and when others in the home were it would usually skip her. At age 8 Erin developed a cyst in her nose, and it was removed immediately and it was questioned to be cancer and then discovered to be benign. At age 9, Erin suddenly developed seizures. It has been suspected that the seizures are due to her beginning puberity. Erin was put on seizure medicines and has been on them since. It has been a huge challenge finding the right medicine to assist with preventing the seizures.

Erin began to talk at age 3, and uses a walker to walk with. She is able to walk without the walker but risks falling when doing so. She has not yet had any major orthopedic surgeries, however; has had botox treatments into the hamstrings, adductors, and other muscles to prevent future sugeries. However, we are currently discussing the possibility of a surgery to release her adductors and possible hamstrings this summer.

Erin has received Physical Therapy, Occupational Therapy, Speech Therapy, Hippotherapy, Early Intervention Services, wore DAFOs (leg braces) most of her life, a right hand spint, has worn glasses since 2 years old, and was also fully integrated in school with support until 6^th grade. She continues to be included in the General Education curriculum for half of her school day.

She is a very happy girl who can light up a room with her smile. She loves people and wants to be loved in return. Erin is passionate about animals (especially horses) and enjoys collecting different type of sports cards.