Monica Price, a young woman with multiple disabilities - her struggles, joys, and determination to learn, participate and explore
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|Monica copes with multiple disabilities (cortical blindness, developmental
delays, and a complex partial seizure disorder) and skull malformation due to a neural
tube defect called an occipital encephalocele, polycystic kidney disease, Chiari
malformation, and hand/arm deformities (birth defects due to amniotic band syndrome.)
Despite these disabilities, Monica is a delightful and loving young woman and is an inspiration to those that know her. She gets 11 hours of sleep each night and eats mostly organically grown, home-prepared pureed foods. She has tremendous motivation and continues to learn and enjoy life. The following is her story.
Early pregnancy fetal tests showed no abnormalities. Mom is a nurse and was strictly following safe pregnancy practices. There were no warnings that this was a special needs pregnancy. Three days before Christmas, Within minutes after childbirth, our baby was taken by interns to examine a large spinal cord (dural) sac that protruded through an opening at the back of her skull. Monica was diagnosed with a life-threatening neural tube defect called an occipital encephalocele.
Within hours of birth, Monica was rushed by ambulance to a neonatal intensive care unit (NICU) at a large city hospital. After examination, the neurosurgeon gave us a dire prognosis. The encephalocele was "leaking" and chance of infection and death were imminent. Without brain surgery to remove the encephalocele, she had only days to live. With surgery, she may live a short, difficult life with multiple and severe disabilities. Brain surgery with a 50/50 chance of survival was the only chance to save her life. Life or death - the choice was ours. For me, there was only one option - do whatever could be done to save her life.
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|Not knowing if she would live or imminently die, we invited family and friends to quickly came to the NICU and visit our newborn
baby Monica. We had to let them know that their first visit with our baby may possibly be their last. We were torn to pieces with emotions... we were so happy to have our first baby to love, but grief-stricken that she may
soon leave us forever. With aching hearts, exhausted from days without sleep, our eyes red and faces swollen from crying, we spent all our time being with Monica, cuddling and comforting her.
On the afternoon of Christmas Eve, our 2 day old baby was taken to the operating room for brain surgery to remove the encephalocele. After four excruciating hours of waiting and praying, we were told that our baby had survived the surgery - our own Christmas miracle!
The surgery removed a large part of her brain, including dead gray matter inside the occipital encephalocele - presumed to be mostly from the occipital and parietal lobes. The missing portion of her occipital lobe would effect her eyesight and balance.
Monica was subsequently diagnosed with multiple disabilities and disorders including cortical blindness, MR and partial complex seizure disorder. The neural tube defect had also caused malformation of the skull, called microcephaly.
In utero, Amniotic band syndrome caused a constriction in the upper left arm and loss of middle and ring fingers on the left hand and deformity of her little finger. The constriction was so tight around her right upper arm, that blood had to flow through the humerus to reach her forearm and hand. Within the year, Monica had surgery to relieve the constriction and reconnect blood vessels to her right forearm.
Monica had more surgeries in the following years, including hand surgeries and a spinal fusion for scoliosis, but after each one she recovered remarkably fast. As her early years passed, we did not see the bleak prognosis that had been given to us. Monica thrived and was enjoying life, so I decided to share Monica's success story to provide hope and help for other parents of special needs children. Thus was the concept and beginning of the construction of this website in 1997.
Monica was named after my paternal grandmother. My grandmother took care of me for 2 1/2 years after my mother died from polycystic kidney disease.
Now in her twenties, Monica's full grown height is 4 ‘ 8 " and a weight of 93 lbs.
Monica has rarely been sick and is physically strong, although she has difficulty with balance due to the damage to the occipital lobe. She likes to hold hands and cuddle and she can walks with someone holding her hand or with guidance using a rolling walker.
The neural tube defect affected her brain stem with a condition called Chiari malformation. Monica does not sweat and does not have good control over her body temperature, so we have to keep her living environment temperature around 70 degrees. Her hands and feet are often either very warm or cold. We have also found that cold can trigger a serial tonic seizure.
Monica eats mostly home-prepared, puree'd food, because she does not chew and does not tolerate textures well (she gags when textures change and sometimes when flavor changes). She has learned to hold a spoon and bring it into her mouth with food. We are still working on teaching her how to scoop food from a plate.
Monica has had generalized myoclonic seizures that are now under control with multiple medications, with no noticeable side effects. She continues to have some partial complex seizures that occasionally disrupt her attention and functioning throughout the day. These partial complex seizures demonstrate as grimacing, teeth chattering, leg, torso, head and arm tremors and stiffening.
Monica learned to hug at age 4, and has been an avid hugger ever since. Every morning, when dad gets Monica out of bed, we give each other a big hug.
Monica is legally blind, but can see light, walls, and other objects, enough to walk without bumping into things, but her depth perception is poor and she tends to neglect objects in the visual field below her knees. Monica will reach for an object that is still 2 feet away from her grasp.
Starting at age 2, Monica showed remarkable perseverance in trying to walk. Monica has difficulty with standing balance and needs minimal assistance. After 5 years of consistant daily effort, Monica learned to walk by age 7.
It is difficult for her to walk, taking a few steps forward and then a couple back to regain her balance, but she eventually gets to her destination. At home, besides occasionally walking, Monica uses a footstool on castors or a 4 wheeled walker to navigate around. At day program, Monica uses a 4 wheeled walker, a five castor office chair or modified tricycle.
Since she was a baby, Monica's favorite bedtime companions are her Raggedy Ann dolls, that she held all night.
In Elementary School, one of Monica's special duties was is to pedal her modified tricycle from classroom to classroom picking up and then delivering attendance records to the Principal's office. She now uses her own tricycle at day program.
All of Monica's activities at school and at day program are performed with one-on-one aides that stay with Monica throughout the day. Besides the special education class in school, Monica received occupational therapy, speech therapy and physical therapy. Monica occasionally received occupational and physical therapy at day program.
Monica was well known in the local school system. We were told many times by teachers that she is a real asset to the classroom. Other children have learned about disabilities and not to fear other children that may be different.
Often, when she is out in the community, former classmates will come up to Monica and say "hi". Monica cannot speak but sometimes she will wave "hi" or give a hug. We wanted Monica to be know, recognized and accepted by her peers... and that is happening!
Monica's loves to use a computer. She is learning to use a mouse using software from RJCooper.
At age 12, Monica learned to eat a peanut butter and jelly sandwiches that are cut up into pieces, picking up the pieces from a plate and putting them in her mouth by herself sometimes. She still does not chew with her teeth, but uses her tongue to compress the food against the roof of her mouth.
When she is being fed, she is learning to gently clap her hands once or twice to indicate she wants more food. Sometimes we have to "cue" her to clap her hands by saying the word "more" or "Do you want more to eat ?" Sometimes she taps her chest with her thumb to indicate that she "likes" something or wants more.
By age 15, with persistent effort from one of her longtime afternoon aides Marguerite, Monica is learning sign language. Monica has learned to nod her head "yes", wave "hi", tap her chest to indicate she wants "more", wave her hand and tap her forehead to sign "hi dad". She also knows the sign for "bed" and "shower", which is one of her favorite activities. Monica loves water.
With occasional assistance, Monica can now scoop from a plate with her spoon and bring it to her mouth. She has learned to sip with a flexible straw from a cup that has a lid, enjoying orange juice in the morning and chocolate milk with lunch.
Monica enjoys drawing colorful lines with dry erase colored markers (listening intently as they squeak) on a white board. She tends to prefer auditory and tactile stimulation over visual
Monica has her own chair in the living room, a low to the ground, bucket seat of fabric. During mealtime, she sits in a Trip Trap chair in the kitchen.
On December 19, 2001 Monica underwent a 7 hour spinal fusion operation to straighten her back that was curved to a 40 degree angle from scoliosis.
Monica did not complain from the pain after the surgery, but we gave her pain medication for the next two weeks. Her mom slept in Monica's hospital room for the next several days and dad relieved her on the weekend.
Much to our delight, Monica started to regain her appetite on the third day after the surgery.
Several days after the surgery, a physical therapist and dad started to get Monica to stand and walk the hospital corridor with a walker. It was now apparent to us that it would be a struggle for Monica to learn how to walk again. But Monica was more than willing to get out of bed and try.
Monica was allowed to come home early - the day before Christmas Eve. We were so happy to have Monica back home so we could spend Christmas together at home.
At 18, we went to probate court for legal guardianship for Monica. A few months after that, we had a knock at our door and it was a court-appointed attorney for Monica! We were so surprised! It was a nice visit and the attorney met Monica and the family and got the appropriate information in preparation for the guardianship hearing.
Martha is Monica's younger sister. Martha is a talented musician, singer and dancer who recently graduated from college with a degree in performance management. The picture shows Martha teaching Monica how to play the drums. Monica enjoyed hitting the cymbals and listening to their sound.
Monica seeks out sounds throughout her day, often trying to get objects to make sounds by rubbing them against her left ear or dropping them.
By age 18, Monica was no longer tactically defensive. She now seeks out other people's hands and enjoys holding hands for hours at a time while cuddling on the sofa before bedtime. If she can hold both your hands, so much the better. This is quite a change from infant Monica that did not want to have her hands touched at all.
Here is a picture from Monica's "special" high school graduation ceremony. During the rehearsal for the entire graduating class's graduation ceremony, the principal (blue shirt) and the directory of special education (black suit) had a special graduation ceremony just for Monica.
The principal introduced Monica and spoke about her accomplishments over the last 4 years. He congratulated her and gave her the high school diploma. Monica received a resounding and wonderful round of applause from her classmates - the entire graduating class. It brought tears to my eyes.
What a proud day for Monica and I! Monica left the stage carrying her own diploma! The aid on the right in the picture has been helping Monica in school for the past 6 years. Monica and I have been blessed to have her helping Monica get through school day by day.
Monica attended high school for one "post-graduate" year (she can stay in public school through the year that she turns 21). Now she attends an Easter Seals day program during weekdays.
In June 2013, Monica became ill from an infection in a hemorrhaging kidney cyst. Monica suffers from Polycystic Kidney disease, a genetic disease that she shares with her dad and grandmother. After the initial round of antibiotics did nothing, a second visit to the emergency room and a CT scan of her abdomen revealed the horrific condition. The test showed that a large mass including her left kidney had been developing. Surgery was scheduled for the following day. The large mass included her left kidney and part of the colon. The 4" x 10 " complex mass in her abdomen obliterated her left kidney and was removed.
Monica survived the surgery and stayed in intensive care at Backus Hospital for almost 5 weeks. The staff treated her very well and helped her survival. Monica's parents stayed with her day and night since Monica is unable to express her needs and discomfort. We found that a rise in heart rate correlated with increasing pain, prompting a request for pain killers.
Recovery was excruciatingly slow. For 2 weeks, she was unable to breath on her own so she was intubated. Fighting various infections was a constant battle. She was treated for sepsis, pneumonia, UTI, thrush, as well as the kidney infection.
She was able to usually sleep comfortably, waking up for a couple minutes occasionally to either play or try to take her IV out. The IV was used to provide nutrition, antibiotics and other medications. Bless her sweet heart, she did now know how sick she was.
We read to Monica for played her favorite music. A small raggedy anne doll was brought in to further comfort her. Caregivers from Easter Seals visited her almost daily. Her sister Martha flew in from Denver to spend a week with her sister while she was recuperating in the hospital.
After 3 weeks, the internal bleeding finally stopped. Vitals were getting closer to normal except for heart rate, which is about double what it normally is. Remaining kidney was doing fine. She still had an NG tube, respiratory tube and IV in neck.
Slowly the introduced small amounts of food in her stomach to see how her digestive system is working. She had 30 pounds of edema!
After a month of intensive care, Monica was ready to come home. She still had a G-tube for feeding as her swallowing was not functioning properly. We were told that this was due to the intubation and Speech Therapy was needed to get her swallowing reflex stronger.
Monica had Speech Therapy for two months, once per week, after discharge from the hospital. She now is able to eat nectar thickened foods either by spoon or straw. When Monica consumed thin liquids, it was inconsistent that the entire bolus went down the esophagus - Monica's swallow reflex is still not fast enough to properly route thin liquids. The final prognosis from the Speech Therapist indicates that Monica may never to able to eat thin liquids, including ice cream, ever again, for her own safety. The risk is aspiration pneumonia.
Monica saw her nephrologist recently and her remaining kidney is functioning fine. Monica looks healthy and is back to her normal activities. Monica is now being fed using a G-tube as well as by mouth (for treats). She is now well hydrated, a problem that had been ongoing with her. One of her caregivers has noticed that her seizure activity has decreased since receiving her nutrition via G-tube.