Will has been a scrappy fighter since the day he was born. He and his twin Luke arrived in March 2007 at 29 weeks gestation – 11 weeks early – and Will was born with two black eyes. How’s that for brotherly love?
William Rost Slavik was 2lb 15oz at birth. Skinny, pink, and furry… he looked like a little old man who couldn’t fill in his own skin. Within 2 days of his birth, an ultrasound revealed a large amount of bleeding within his brain and around his liver. His doctors transferred him to the North Carolina Children’s Hospital at the University of North Carolina the next day.
During that first week of life, all the news we heard about Will was horrible. The bleeding in his brain was classified as bilateral grade 4+ intercranial hemorrhages. Our neonatologists told us the likelihood of long term effects was guaranteed. He was on a ventilator because his lungs weren’t developed enough to breathe on their own. His heart rate kept dropping. He wouldn’t open his eyes.
Once we got past the first week, things seemed to level out. The bad news didn’t get any worse. And when Will was exactly 1 week old, he opened his eyes for the first time and we were allowed to hold him. For a baby who was so close to death just a week before, this was a wonderful time for us. All the tubes and lines and beeping didn’t really matter. This was love.
Over the next couple of weeks, we started noticing that Will’s head was getting very large. When it got to the 105th percentile, we were told that Will had developed hydrocephalus from his brain hemorrhages, and the only way to correct it would be for a VP shunt to be placed. This is a tube that goes from the interior of the brain to the abdominal cavity, to drain excess cerebrospinal fluid. Will had one surgery when he was 4 weeks old and another when he was 8 weeks old. This was very scary for us, but Will came though like a champ. After his first surgery, he even decided he didn’t need oxygen assistance anymore. Breathing on his own at 33 weeks gestation – 4 weeks ahead of his twin!
Two weeks before discharge, Will’s retinas showed damage from prematurity – called retinopathy of prematurity (ROP). Back in the day, this caused preemies to go blind because there were extra, errant capillaries in the eye causing the retina to detach. Nowadays when someone has ROP, an ophthalmologist does laser surgery to stop the capillary growth and permanently attach the retina. The long term side effect is near-sightedness.
Will and Luke were released on their due date – together! We settled in at home. Will started physical therapy after being at home for 6 weeks. He worked on things like head and neck control, tummy time – things that babies typically do on their own.
It started to become apparent to us around 4 months after coming home that Will couldn’t see very well. He wouldn’t track anything visually and often crossed his eyes. We checked in with an ophthalmologist, who diagnosed Will with cortical vision impairment (CVI) – totally unrelated to his ROP. When a child has CVI, there is nothing physically wrong with the eyes, but there is a problem in the transmission of information from the eyes to the brain. There is no treatment or correction for CVI, and it isn’t uncommon for kids with brain injuries to be diagnosed with it. Will started to see a visual therapist from the local school for the blind to help stimulate his vision. The first thing he really looked and seemed interested in was a shiny green pom-pom.
As Luke developed along a more typical development path (though slightly delayed), Will started missing development milestones around 6 months, when he was unable to sit up on his own or hold up his head. We continued to see many specialists (or ‘ologists, as I call them), but we had no diagnosis for what was going on with Will. He saw his physical and visual therapist weekly, and we continued to do what we could at home.
When Will was 18 months old, his VP shunt got clogged and he had to have emergency neurosurgery. He was home within 24 hours of surgery, in a better mood than before his surgery and with a greater appetite!
Around this same time, Will started being followed by a physiatrist – this is a doctor who focuses on physical rehabilitation. When Will was 18 months old, he got his first wheelchair. It was on the written prescription for the wheelchair that I finally learned of Will’s diagnosis – quadriplegic spastic cerebral palsy. No one ever mentioned the words to me, but it was something that we suspected for a long time. The diagnosis didn’t change anything, but it certainly became easier to explain some of Will’s physical limitations!
Will loved his new wheelchair. He was finally able to sit up and enjoy the world around him. We modified toys for him to play with, and Luke learned to pull up and stand by holding onto Will’s tray.
When Will was young, he did very well with bottle-feeding. He continued to do well when we moved him to pureed baby foods. But when Will tried to eat semi-solid food, he coughed and gagged a lot. This is not uncommon with children with cerebral palsy. Will started to see a speech therapist to assist with his feeding and verbal speech.
Will said his first word – mama – when he was nearly 2 years old. This was after a lot of hard work, and was music to our ears!
During a 6 months period when Will was just 2, he didn’t gain any weight. Though we tried desperately to feed him nutritious food and drink, he vomited a lot. In order to get Will the nutrition he needed, we had to make the difficult decision to have a surgical gastric feeding tube (or g-tube) placed. Will was hospitalized for a week for this painful surgery. Two days after his surgery, he was kicking around and smiling… and finally gaining weight! Will continues to work hard to eat by mouth, but we utilize his g-tube to give him some extra calories while he sleeps. Since the g-tube surgery, Will has gone from 2nd percentile for weight to 35th percentile. Much healthier! And when your nutritional needs are being met, you are happier and have more energy to devote to therapy J
At the age of 2 ½ Will showed us that he was bored at home. After careful consideration, we placed him in an inclusive day care that specialized in children with special needs. He was in a class with 10 peers, all typically developing. Will loved people playing with him, talking to him, and being around other kids! He continued to see his physical, visual and speech therapist during this time. They worked on crawling, stretching, visual tracking, eating more solid foods, and learning new sounds. We also added an occupational therapist to help him learn how to use his hands – a pretty tough feat with cerebral palsy!
Will got a lot of sinus infections and we had a tough time keeping him healthy. He had his adenoids removed (5th surgery, if you’re counting!) and didn’t miss a beat. We started taking him to hydrotherapy around the same time – he loved splashing around the therapy pool. The elderly folks using the pool at the same time as Will couldn’t help but smile through their own therapies because his squeals of delight were so loud.
When Will turned 3, he entered our local school system for a pre-kindergarten program for children with multiple needs. This was a hard transition for Will, because the other kids in his class were just like him – in a wheelchair and non-verbal. Will missed his “typical kid” interaction at school. He complained (cried) a lot at school, but seems to have settled into a routine. He really enjoys spending time with the 4th graders that visit his class weekly to read books and sing songs with him. It became clear to us that Will really enjoyed interacting with people. Will’s teachers tell us often that they can tell that Will is incredibly intelligent. Even though he cannot speak, he is able to communicate his likes and dislikes to us – and one of the things he DOES NOT like is being stuck in a corner by himself!
Within months of starting school, Will had his first seizure. With his level of brain damage and atrophy, epilepsy is not uncommon. However this was new for all of us, because Will has never had seizures before! Over the past year and a half, Will has gone from having no seizures to more than one per month. We have tried many different medication combinations, but Will continues to have seizures.
Will’s seizures are very scary for all of us. Typically, when his seizure subsides, he is very sleepy and very happy to take a long nap with mommy or daddy. Several times, though, his seizures haven’t subsided and we’ve had to call the paramedics or take him to the ER. Will visited the ER 8 times in 2011, and was admitted twice for prolonged seizures. In 2012, we will be meeting with some of the top pediatric neurologists and neurosurgeons in the world to see if Will is a candidate for epilepsy surgery.
We are an active family. We like to spend time outdoors. Will’s wheelchair doesn’t go off-road, so we acquired a kid hiking backpack and take Will hiking with us. He loves it! It is also therapeutic for him, because he feels the motion of human walking. We will only be able to do this while my husband can carry Will on his back – which we’ll probably push as much as we can.
Over the course of the past couple of years, Will’s leg muscles have gotten progressively tighter. We stretch him every day – often several times a day – but we’re fighting against some pretty significant brain damage. Will had his first Botox injection in his legs in 2011, and though really painful, this really loosened up his muscles. Will cried through the injections, but within hours, was kicking his legs like he hadn’t done in years. Botox isn’t permanent, so Will will have to get more injections in the years to come. Painful but helpful. I just hope he realizes that they help him – and when his muscles are loose, he can move so much more!
When Will is healthy and seizure-free, he enjoys watching Weather Channel and Elmo DVDs. He loves music and bright colors. In April 2011, we took him to his first (and only) therapeutic horseback riding lesson. He adored riding around the ring on the back of Diablo, his noble steed. Unfortunately, things like therapeutic pools, therapeutic riding programs, communication devices and handicapped lift vans are not cheap and are not covered by insurance.
We have the ability to cover the costs of most of Will’s medical care. What we don’t have the ability to do is pay for the cost of therapeutic pool membership, therapeutic horseback riding programs, and communication devices. Any money raised from Will’s Warriors and the Tough Mudder will allow our smiley, fun-loving kid to get some enjoyment out of life.
In the future we’ll also need a van equipped with a lift to pick up Will and his 85lb wheelchair. For now, we’re working out like Jaerid training for the Tough Mudder, lifting that chair into and out of the back of the van. And one, and two, and…
Despite everything that he has been through, Will continues to amaze us. Even though he is tired from a long day at school, he still goes to physical therapy twice per week and is learning to walk with a gait trainer! He gets such a kick out of being an active part of our family – one of his favorite toys is a computer that plays music. Our whole family claps along with one of the songs, so Will plays that song over and over and over again just to get us all involved. He listens intently when we talk, looks at us when we enter a room, and smiles when we tell him we love him. He’s quite a kid. He’s tall and skinny… still that scrappy fighter we met nearly 5 years ago.