Pauli ,March 2003
This Site is a place for Memory, Peace, Love, Friends and Family. Please sign his guest book to let Paul's family know you were here!
On July 26, 1993, Paul was born with a rare disability called: hydranencephaly. He was missing a large portion of his brain and in place of the missing parts of his brain, fluid filled that portion of his head. Right after birth, his apgar scores were normal and no oxygen was needed. He was then taken away for some testing. A CAT scan and MRI confirmed a diagnosis of hydrocephalus complicated by hydranencephaly. I was told to take him home to die, that he would never know his mother, never walk or talk. He would just lay there and breathe until his organs shut down.
Well, he took right away to eating from the bottle- he ate like a champ! He amazed the professionals in every way he could but they still pressured me into placing him in a nursing home.They felt that was the "best" place for him. An attending ER doctor had accused me of drug abuse and or alcohol abuse, stating that is why Pauli was born with a disability. Blood tests on both Pauli and I later confirmed what I had told her, there was no such abuse. Hydranencephaly has no known cause, it is not genetic nor has it been proven to be preventable. It is possible that Pauli had a stroke in utero or that something stopped blood flow to cause his brain to stop developing. I toured one local child's nursing home but was set dead against him going anywhere but home with me. He belonged at home with his family no matter how long or short his life was to be. After ten days in the NICU he came home.
He progressed as a normal baby for the most part. By time Pauli reached four weeks of age he had become very irritable, stopped eating so well and was not sleeping much unless you held him. There was a large increase in Pauli's head circumference and he had "sun setting" eyes. After consulting with his pediatrician and a neurosurgeon a VP shunt was placed. After the shunting his mood changed, he was happy baby again. He began sleeping better and eating better. By time he was a year old he was thirty pounds (from 4lbs 14 oz at birth). He was never a big sleeper, he could go for days on only a twenty-minute catnap. A few weeks after his surgery he began with our local Early Intervention Program and home based therapies. His therapists came to our home to give him physical, occupational, speech therapy and special education.
He remained in Home Base Early Intervention until his third birthday, he then began going to a Center Based Preschool. He loved to ride the bus. If you could have seen his face light up as he heard the bus pull up! At the age of one and a half, Pauli began seeing a neurologist for possible seizures. He also started medication that same year for the seizures. His seizures were "starring" spells. Pauli remained hospital free until the age of two. He was very healthy and happy, except for the occasional cold or ear infection. He came home from his first hospital stay with his first piece of medical equipment, a nebulizer for breathing treatments. Pauli had recurring ear infections over the yrs that lead to tubes being placed in his ears. The tubes were placed to help stop the ear infections, which also lead to respiratory problems. Respiratory problems seem to be the one issue that he struggled the most with throughout his life. Many more pieces of medical equipment made their way in to our home over the yrs! Paul continued to develop and amaze us all. Because of the severe brain damage (hydranencephaly), he was also diagnosed with cerebral palsy.
Pauli was depended on a wheelchair as his main mode of mobility. That didn't stop us from signed him up for a local special needs bowling league and. he also started on a Challenger Little League team that same summer. Both leagues would have “ healthy” kids from the community come and assist the kids who were differently-abled participate. Paul thrived on all the attention he received being a social butterfly and enjoyed his therapies. So along with the many doctors appointments he had, we tried to do the “normal" things kids his age did.
Up until the age of four Pauli ate orally, very well. He would eat just about anything especially pudding with whipped cream! Getting fluids in him was always a big issue. He also began being hospitalized more for respiratory issue. By being so sick so often he did not have the energy to eat enough to sustain his weight. Eating became a chore, taking over an hour sometimes to get one meal in him. So after much contemplation, medical advise from his team of doctors and an array of testing, the feeding tube and nissen funduplication was placed. He was just shy of 6 when it was finally placed. Pauli no longer struggled to eat, we were able to get a ton of fluids in him, he gained weight, respiratory issues subsided and feeding when he was ill was so much easier on all of us. He no longer had to taste any of his meds either!!! With the nissen his refluxing was finally under control and the respiratory issues almost ceased to exist! The numerous and frequent pneumonia(s) did damage Pauli lungs though.
Pauli was also declared legally blind (cortical visual impairments) shortly after birth but wore glasses to help with what vision he had. He loved to watch videos, listen to music or play with his light box. When he became school age he attended a Center for the Disabled, School Age program. There he flourished. He received all his therapies according to his individualized school plan and received the social-interaction he thrived on. The Center had an amazing amount of equipment and services all in one place. Pauli especially liked to play with switches to activate toys or music, participate in cooking group while receiving his OT, receiving hydrotherapy in the heated pool and participate in the Special Olympics they held each yr. http://centercares.org He had an amazing team of doctors over the years.
Each doctor treated Pauli with respect and gave him the best medical care they could. Not only did his doctor “listen to mom” when I came to them for help or advise but they heard what I said. By keeping the team of doctors, therapists, teachers and having a wonderful circle of friends and family Pauli was able to grow and develop to his fullest potential. He loved life. We were able to have an amazing amount of special equipment in our home to help Pauli physically develop. It also gave us the opportunity to care for him at home rather than rush off the hospital every time he was ill. There was a lot we could do for him at home with the help of equipment and home care nursing. Home care nursing provided me with alternative care-givers (nurses) who I felt comfortable enough with, to leave my child in their care. Home care nursing allow me to work on my college degree by attending night school, work a part time job or just be able to run everyday errands with out having to drag Pauli all over the place. He was able to stay home and stick to a normal routine and it gave mom some “me” time.
I wanted Pauli to live as normal a life as possible. I realized his health didn't always allow that but we did things when he could. He enjoyed OT group on Saturdays then going swimming in the heated pool, shopping, finger painting while in his stander, trick or treating, holiday parties, being read too. . . And of course being cuddled or sleeping' in with mom on Saturday mornings!
When Pauli was 5, The Children Wish Foundation, granted him a wish. We were able to take him, on what turned out to be, our only family vacation. Thanks to the generosity of CWF, Pauli enjoyed a full week stay in Disney, a visit to a different park each day and a lot of attention from the Disney Characters! Memories I will never forget. . . (- i will up load the photos soon) http://www.childrenswish.org/
Pauli was a courageous little boy. In the end pneumonia was what took his life. His little heart could not fight the battle for him, he was too sick this time. He fought many battles throughout his life; surgeries, illnesses, physically limitations. . .it wasn't always easy for him. He taught me so much. . . how to unconditional love someone, to be a patient person and that just be cause one maybe differently-abled doesn’t mean you can’t live life to the fullest! I am having to learn to live life differently without him here on earth with me. Pauli will always be my ray of sunshine. . . . http://www.myrayofsunshine-pauli.memory-of.com