14 Years as a Riley Child with a personality that warms you.

In the beginning of my pregnancy, everything seemed normal.  Toward the end of the pregnancy, as it turned out, I was diagnosed with Preeclampsia.  Preeclampsia is most common in first time pregnancy and usually in the third trimester.  Some signs of Preeclampsia:  high blood pressure, excessive swelling of the hands and feet, and large amounts of protein in the urine.  A few women develop a condition like I did called eclampsia (seizures caused by toxemia).  The treatment for preeclampsia is delivery of the baby.  In a lot of cases the baby is delivered early.   On April 27, 1992 Nickolaus Long was born eleven weeks pre mature when it was found that along with my problems that I was having, that Nickolaus had Meconium ileus: obstruction of the intestine.  Nickolaus was taken immediately to Riley Hospital for Children for the first of many surgeries and medical problems. 

During his hospital stay, the doctors discovered that Nickolaus had Hydrocephalus.  Hydrocephalus: an abnormal accumulation of cerebrospinal fluid in the brain.  This requires a surgical procedure to insert a shunt into the ventricular system of the brain to divert the flow of cerebrospinal fluid into another area of the body, where the cerebrospinal fluid can drain and be absorbed into the blood stream.  This was the first of many complications to start.

Nickolaus spent most of the first nine months of his life at Riley Hospital in and out of surgeries with many complications that inhibited him from coming home.  There were a few times Nickolaus was released from the hospital but within a few days he would have other medical problems or complications that would send him back to Riley Hospital.  Nickolaus recovery period after surgeries was never a normal recovery period.  He always had complications and ended up in the hospital for weeks sometimes months longer than expected.  Nickolaus has had thirty-eight surgeries to date.  There were times when his medical condition would deteriorate to a degree that the doctors were not sure if he would pull through or not. 

Nickolaus has undergone several types of therapy since birth.  Speech therapy, physical therapy, occupational therapy, and four years of feeding therapy. Nickolaus now will eat by mouth but is still dependent on his feeding tube for supplemental feedings.  His weight continues to be a major struggle for him.  Other struggles and obstacles Nickolaus deals with on a daily basis are ADHD, seizures, optic atrophy, migraine headaches, growth hormone deficient, and multiple developmental delays. 
Nickolaus is in the seventh grade in the Brownsburg, Indiana school system.  He is on the honor roll and loves everything about school.  His high point of the day is the bus ride to and from school.  He takes eighteen different medications throughout each day.  His classes at school are arranged around his medication and tube feeding schedule.  We are very fortunate to have such a wonderful team of people at his school who are so loving and kind.  The nurses, Mrs. Collins and Mrs. Story, his special education teacher, Mrs. Peterson, his facilitator, Mr. Dugan, and Sherri, his special needs bus driver.  Everyone in his school actively participates in his daily care; even the other children are so kind and helpful to Nickolaus.  Nickolaus loves each and every one of them. 

When Nickolaus must go to Riley for surgery, he likes to get up extra early that morning to allow time so that we can go for a drive through the country.  He tells us that this puts his mind at ease.  Nickolaus is a fighter and has never complained about any of his medical problems, taking medications, daily injections or surgeries.  I believe that his doctors at Riley Hospital for Children have really helped him to understand the necessity of everything that they do for him and that what they do will help keep him healthy.

Nickolaus has many loves in life.  To name a few, Firefighters are at the top of his list.  His Papa is a retired Indianapolis firefighter.  Nickolaus enjoys listening to all of his stories about being a firefighter.  He can sit for hours just listening.  Nickolaus uncle Jim is a firefighter at station #29 and one of his favorite things to do if he has a day off from school is to go down to the station with his Papa and visit.  He has probably been there a million times but he is just as excited to go and see “Uncle Jim” and the “Fire station” each time like it was his first.  He absolutely loves car racing and looks forward to helping John Andretti every year with” Race for Riley”.  He has said many times that this is his way of helping the children at Riley like he was helped when he spent so much time there.  Nickolaus also love the “United States Army”.  He is a very patriotic young man.  He has insisted on his room being red, white, and blue.  He likes to do the every day boy things like ride his bicycle, electric scooter, and play on his computer.  Nickolaus never complains when his activities are interrupted by his medication schedule or his tube feedings.  He knows that it is all part of keeping him healthy.  He does have restrictions on some of his activities due to some of his medical conditions, like he is not allowed to play any contact sports like baseball, football, soccer, etc. We find other ways for him to enjoy these sports like going to the Indians baseball games and some one on one play. 

Today Nickolaus is a very happy 14 year old boy who tries hard to fit in with normal developing children his age.  If you were to ever meet Nickolaus, you would probably never know that he has so many medical challenges.  He is very outgoing and has never met a stranger.  He always seems to see the glass half full rather than half empty.  None of us ever expected things to turn out the way that they have turned out, but Nickolaus is such a blessing, he is so strong and understanding of things that I don’t believe anyone could ever expect a child to understand let alone deal so well with. 

I want to thank my Mom, Dad, & sister Dayna for giving Nickolaus and me so much love and support.  You know as Nickolaus always says “you are in his heart and he feels you there”.  We love you.  I also want to thank Kel, someone whom I love dearly.  You are always there for Nickolaus and me with love and support.  You have been there to teach Nickolaus so much about acceptance of his challenges and life in general. 

For a final note:  In May of 2006, Nickolaus was diagnosed with Cerebral Palsy.  Nickolaus had a hard time with this diagnoses at first but he is dealing with yet another challenge with great support form everyone and determination.