Eleri

April 7th marks not only our eldest son Ben's 17th birthday, it is also the 3rd anniversary of the telephone call that changed our lives forever. Near the end of that fateful day, we got a call from our social worker (we have been foster parents for quite a few years) who told us there was a baby girl in the Pediatric Intensive Unit at the University Hospital who had experienced shaking and abuse resulting in extensive traumatic brain injury as well as more than 25 skeletal fractures. She said they were uncertain whether the baby girl was going to survive the next 24-48 hours as she had already flat-lined twice previously and been resuscitated. If the baby lived, she was going to need full-time care and high-level services. We agreed, and waited anxiously for the next phone call.

Three days later, we met our little girl. She was unbelievably tiny for three months old, her head was so swollen and misshapen that it was hard to tell what she might look like. She was cradled in a tiny "nesty" made of little semicircular pillows and was attached to all manner of pumps, tubes and wires that constantly beeped and shrilled. Her room was cool and dark because of the brain injury, her extreme instability and CNS reactivity. We were told not to expect much because she was blind, deaf and unresponsive. My partner held her first, and she snuggled into her chest. She turned toward our voices almost immediately. We fell instantly in love with this tiny warrior and for the next several weeks, we essentially camped at the hospital while we learned about infant massage, co-regulation, traumatic brain injuries and the long-term effects of shaking and child abuse. Her hearing progressively improved and she regained some vision, although she will have lifetime effects from the cortical visual impairment and bilateral retinal hemorrhages. A feeding therapist taught her to suck and swallow again and she tipped the scales at 8 pounds when we brought her home at four months old. The rehab team at the hospital told us that the most important, and most difficult, aspect of her recovery would involve learning to trust adults and allowing herself to be loved.

For a long time, she couldn't cry - she would just open her mouth and tears would course down her cheeks. She would panic when we kissed her and she quite often forgot to breathe. Feeding was always very challenging, as we had to constantly stimulate her to suck and swallow, and she aspirated regularly. She started having seizures just before she was discharged from the hospital, and they increased rapidly to the point where she was having upwards of 100 per day.

We began working with a large team of early intervention specialists from New Vistas: she had developmental specialists, medical social workers, infant mental health professionals, feeding and speech therapists, an occupational therapist, a physical therapist, a vision therapist and craniosacral therapists. Over time, we also added music and aqua therapy. We had therapists in our home 6 days per week. Everything that other children do automatically, Eleri has to learn. She will have to work her whole life trying to recover from the abuse she experienced during her first three months.

Eleri spent her first year going to medical appointments, having a feeding tube implanted, trying to get seizures controlled and recovering from emergency surgery resulting from a brain bleed. She took more than a dozen different daily medications, for seizures, for management of fluctuating tone resulting from abuse-caused cerebral palsy, for severe reflux and reactive airway disease. Her specialists all worked closely with us, with one another, and with her EI team. It was clear that the seizures were worsening and, because they occurred virtually everywhere in her brain, they were difficult to treat with medication. Her brain was not growing and she was unable to learn or remember anything. She felt miserable all of the time. She was not a candidate for further neurosurgery. Her neurologist suggested that we try the Ketogenic Diet, which would necessitate a week-long hospitalization as her body shifted from burning carbs to burning fat for fuel. Our hope was that she might be able to take fewer meds and be more comfortable and alert. On the third day of the Diet, Eleri's seizures stopped and have not recurred. She has been seizure-free for nearly two years. All areas of her brain are growing, her memory issues have dramatically improved and Eleri is now a silly, sweet, affectionate, very bright and incredibly joyful child.

Eleri became part of our forever family on my birthday in 2010. Our home is filled with Eleri's equipment, from crawling trainer to her magenta sparkly walker, to feeding pumps to oxygen tanks, to her stroller/wheelchair, to shaky vest to too many small therapy tools to count to her stunning therapy tub from Make-a-Wish. Our home is also filled with children (5, ranging from 18 months to 17 years), pets (dogs, cats, chickens - well, the chickens live outside), and most of all with love.

Eleri now has normal hearing, is learning to crawl, can roll super fast, walks with her walker, loves to sing and dance, understands everything and sometimes chooses to sign or say some words, is mad for her swing, adores her family, has decreased the amount of body armor she needs to wear to a flexible torso vest, soft hand braces and AFOs. She had vision testing this week and is no longer legally blind; she will always have significant visual impairment and will be eligible for an assistance dog in a couple of years. Our giant malamute mix, Juno, has volunteered for the job. Eleri goes to a therapeutic preschool now and has made many friends - she is quite the charmer.

Our hope for the baby we were told would likely remain in a chronic vegetative state were that she would someday learn to trust and attach to another person and that she would experience joy. She has vastly exceeded all expectations and makes progress every day. Eleri has shown us that there are no limits to the human spirit and that even the tiniest and most fragile among us can be great teachers. No one who meets the Divine Miss Eleri is ever quite the same and we are awed and humbled by the gift of her presence in our lives.

Joey

Joey was originally diagnosed with tcell acute lymphoblastic leukemia in August of 2008. He relapsed in August of 2010 and has been kicking Leuk the Loser's Ass as hard as he can. As of March 2012, he is in remission and has almost finished round 2 of 3 85 days cycle of steroids and chemo, including Nelarabine which has only been approved for kids for a few years now. Joey finished his second round of frontline treatment in July which included cranial and spinal radiation. His most severe side effect is a lot of trouble walking. Due to the combination of one of his chemos (Vincristine) and the radiation, Joey was numb from mid waist through his toes and also through his arms and hands for about 6 weeks. Joey's been working really hard on his PT though and last used his wheelchair in early October.

Abby

On January 26, 2011, I received a call from Abby's daycare that her eyelid was drooping. I took her to the pediatrician and we were immediately sent to the ER. They told us that she had an infection in her skull caused by an ear infection and that she was being sent to Arkansas Children's Hospital because of her history (a minor heart defect and airway problems). Once we arrived at the hospital, we were told that she had a large tumor in the right side of her head and around her brain. She was 2 1/2. Her oncologist told us that due the specific location in her brain, that the tumor only needed to grow a few mm and that there would be nothing they could do. We were prepared to only have two weeks with her. She started radiation immediately. Unfortunately, it took several weeks for the pathology to come back because it is a very rare type of tumor, so the start of chemo was delayed. Her official diagnosis was finally determined to be Stage III Parameningeal Sclerosing Rhabdomyosarcoma. It's a muscle cancer and they believe it originated in the chewing muscles of her jaw. She was also given a feeding tube because the jaw location made it difficult to eat and a permanent tube in her ear because the tumor was blocking her eustacian tube.

Thankfully, Abby responded to the radiation and the portion of the tumor around her brain began to shrink enough for her eye to reopen, though it would take months to regain function in the eye. Despite the chemo and radiation, the remainder of the tumor continued to increase in size. After more biopsies and several surgeries to remove pieces of the tumor, they determined that the outside of the tumor was dead and that the tumor was swelling because of the necrosis and irritation. This swelling caused her airway to become compromised, so she received a tracheostomy and had to have her feeding tube switched to one that bypassed her stomach because of several cases of aspiration pneumonia.

After several months of the tumor continuing to increase in size, the decision was made to remove the tumor. Although it meant losing part of her jaw because the tumor had eroded it and losing some function and sensation in that side of her face, it was the best decision. In June 2011, she underwent a 14 hour surgery to remove the tumor and reconstruct her face using half of her abdominal muscles. She has already had three additional surgeries and will need several more. Since the surgery, she has relearned how to walk and can tolerate a speaking valve on her trach so that she can talk again. It will take a long time for her to relearn how to eat, but we are slowly making progress.

She currently has only six weeks left in her 60 week treatment plan and we are so happy that she is cancer-free, in good spirits and nearly at the end of treatment.

Kaden

When he was five my father noticed his left eye crossing in so his mom and I took him to the eye doctor. Well he wanted a MRI right away. We had one April 26, 2010. Following the results the doctor told us that there was a mass that isn’t suppose to be there. It was the size of a lemon. He had surgery April 30, 2010. After being released the doctors ordered Kaden that he has MRI's every three months for awhile. Some time went by and the MRI started showing that the tumor was coming back. So the Monday after Thanksgiving, Kaden started Radiation treatments in Edmond. After he got done with that we had another MRI showing that the tumor was stable. Everything was going good! Well in September I was outside playing with him on his playground that he got from Make a Wish. I had seen that his right side of his face wasn’t moving so we rushed him to Children's ER. They admitted him that night did a MRI the next day. It showed that he had fluid on the brain. They started him on steroids. He gained a lot of weight with it but he was underweight before he started so it was a good thing. So than they decided to do an IV treatment; it’s a type of chemo but not the type where he will lose his hair. It was working but it was causing new fluid on the brain. After the second treatment he begin not be able to walk by himself. On December 12, 2011 he started running a fever so there we were at the ER again. They admitted him, he stayed in for two days. On December 18, 2011 he got choked on some food. We called the doctor and they wanted him at the hospital right then and there. Where the tumor is effect the swallowing and talking, which he was lost but we are working on it with suckers. He can’t eat or drink. He had surgery December 21, 2011 so they could put a port in his chest and a feeding tube into his stomach. Kaden is now in a rehabilitation hospital making his way back to health.