What is Reagan’s Story?

Reagan Marie Neal was born on April 3, 2008 as the youngest of three children.  The pregnancy was typical except for a placenta previa at fifteen weeks gestation.  This resolved as she grew and developed normally until birth.  She was cyanotic(blue) at birth and had a cephalohematoma (a bump on her head that is a hemorrhage of blood on the outside of the skull).  Her oxygen seemed fine after that and the doctors informed us that the hemorrhage was nothing to worry about.  We are still uncertain as to what caused either of these issues.  Reagan was discharged two days after her birth and was considered a normal, healthy baby.   

When Reagan was six days old she began screaming in the middle of the night. As we tried to soothe her, we noticed that her body began twitching in some strange ways and she would get very stiff.  She would then relax her body and scream again. This was happening in a rhythmic fashion and went on for a few minutes.  Following the episode, she fell sound asleep.  The following morning we phoned the pediatrician to report what we had seen.  They immediately felt that they needed to see her for themselves.  During her exam that morning, the doctor witnessed her having another episode and confirmed that she was having seizures.  He carried her to the emergency room himself while he ran.  Reagan continued to have multiple seizures during the hour in our local hospital.  They were finally able to administer medicine through her IV.  Many tests were run and she was taken by helicopter to a bigger hospital.   With her seizures controlled, doctors began to run tests to determine the cause of the problem.  There were no indications as to what caused the seizures except for hypoxia at birth.  Her diagnosis was neonatal seizures, chromosomal deletion, and later developmental delay and hypotonia (low muscle tone). 

Reagan was sent home after her hospital stay and we began doing traditional therapy as suggested by her doctors.  Reagan received therapy four to five times per week.  Even with intensive therapy, Reagan was not reaching her developmental milestones.   Reagan was eighteen months old and could not sit independently, could not crawl, walk, talk, or feed herself.  After a year of this type of therapy and with little to no improvements, we began searching for answers.  Our local neurologist gave us no hope for her.  He told us that the gap between her and typical children would continue to widen.  We were not satisfied with allowing that to happen and furthermore we believed that there was more for her.  Her regular doctor wouldn’t listen when we tried to explain that her issues were more severe than they were admitting to.  Those doctors were content to sit and wait too.  

We began researching different alternative therapies on the internet.  We found a therapy called ABM that involved creating new connections within the brain.  Reagan responded well to this type of therapy initially, but after a few days her new skills seemed to disappear.  We also began to take her to a special chiropractor that adjusted her cranial bones.  Her occipital bone on the back of her head was very flat due to being lethargic from the medicine.  This doctor seemed confident that he could reshape her head.  This would not only help to shape her skull to look normal, but he also felt that the pressure from the occipital bone could be causing some of her delays.  She responded well to this therapy in some ways but it didn’t solve all of her issues.  

We continued to research the internet to find another solution.  We came across Glenn Doman’s book, “What to do with your brain injured child.”  As we read the book, we realized that everything Glenn discussed was directly related to Reagan’s problems.  We knew it all just made more sense than anything else we had learned about.  We were sure this was the answer for our family.  After visiting the Institutes website, we signed up for the parents’ course in November, 2009. We also decided to take Reagan, now twenty months old, to Philadelphia for her initial evaluation after the course.  The time was very inconvenient for us and financially this trip would be a burden but we knew we had to act quickly.  

At her initial evaluation, Reagan was given a diagnosis of Severe, Diffuse, Bi-lateral brain injury using the Developmental Profile.  This diagnosis was somewhat shocking to us but it confirmed the fact that we knew that Reagan’s problems were more serious than the professionals would admit.  We were fortunate enough to have Reagan’s initial evaluation a few days after we took the parents’ course.  We decided that we wanted to begin an Intensive Home Program with Reagan right away.  We began her intensive program December, 2009 after returning home from the evaluation and building our appropriate devices.  

We have been implementing the intensive program for almost two years.  Reagan is now able to crawl over seven hundred feet in a day.  She is now able to read large print books of very sophisticated material and she can understand all spoken language.  Her breathing is much deeper and more regulated and her digestion and elimination are perfect.  She is beginning to make sounds and can communicate with the FC board in single words and some couplets.  Her social growth is amazing.  She now desires to play with her sister, mimic our actions, interact with other family members, and even pretend play.  

Reagan has an older brother and an older sister.  Her sister enjoys encouraging Reagan to reach her goals and helps out around the house as there is much work to be done to maintain the home.  Her brother helps to pattern Reagan is very supportive and encouraging.  They both push Reagan to go a little farther and work a little harder to improve her overall functions.  The intensive program has brought our family closer together and it has encouraged our community as they cheer for Reagan.  We have been given amazing support throughout this journey.  We anticipate that Reagan will continue to amaze us in ways we could never imagine.  We try not to focus on the things we are unsure of, but on the things we are.  We are sure that Reagan’s capacity to learn and attain knowledge will continue to surpass our own and her peers.  We are certain that her tenacity will enable her to be independent with whatever physical capability she has.  We are also sure that as we have been given hope for her future, she also has hope for her future where there once was none.