Wonder Baby

Ivan Kapi'i Bobnar was born June 11th, 2005. Soon after birth, Ivan was having trouble breathing, and, after hooking him up to monitors, we discovered that his blood oxygen saturation was very low.

We spent the first week of Ivan's life in the hospital, then we were sent home with monitors, oxygen canisters, and medication. The doctors were confused but assured us that he would grow out of these respiratory problems (which included apnea and reflux) as his system matured. We were very anxious but also very happy to have Ivan home.

His breathing problems did pass, but by the time he was 2 months old and not focusing on objects we were worried about his eyes. We were told to wait until he was 3 months old. He still wasn't focusing and that's when the crazy stream of doctors' appointments began. Most of his doctors assumed Ivan had LCA (Leber's Congenital Amaurosis), and that was confirmed with an ERG in July, 2006. (You can read more about our ERG and Ivan's LCA diagnosis here.)



Ivan is happy! In the summer of 2008 we attended an LCA conference and felt that Ivan, then three years old, just wasn't keeping up with his peers. So we began scheduling more doctors' appointments and tests and by late 2008 Ivan was diagnosed with Joubert Syndrome along with the already diagnosed LCA. Ivan began seeing a geneticist at Children's Hospital Boston and we soon discovered that he had a mutation on the CEP290 gene that is often associated with both LCA and JS.

But Ivan's trials weren't over. When he was about three and a half years old he began losing his speech and by the time he was four he was completely nonverbal. Ivan had gone from a boy who had over 100 words and was beginning to put two- and three-word sentences together to a boy with no language at all in about six months.

More doctors' appointments led us to a diagnosis of Landau Kleffner Syndrome, a language processing disorder caused by sub clinical seizures in the language center of the brain. Of all the diagnoses Ivan has received, this one was the hardest to take. LKS took Ivan's speech away from him, along with much of his physical and cognitive skills. Seizures are nasty, nasty things.

In 2010 Ivan had his first sustained tonic-clonic seizure and we knew his epilepsy was getting worse. It was a frightening day, and we are still playing the medication game trying to find the right combination and dosage. I'm happy to report that his last 24-hour EEG was spike free!

Through it all I've learned that regression is a bad word, but that it often comes hand in hand with disability and that we should appreciate everything we have now because life is fleeting. I'm also impressed everyday with the grace and strength with which Ivan faces his challenges and I am determined to help Ivan be the best Ivan he can be!

WonderBaby.org, a project funded by Perkins School for the Blind, is dedicated to helping parents of young children with vision impairments as well as children with multiple disabilities. Here you'll find a database of articles written by parents who want to share with others what they've learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families.

If you would like to link to WonderBaby, please click here.

I began this site in 2006 when my son, Ivan, was only one year old. He had just been diagnosed with LCA, a rare retinal disorder, and we were desperately searching for support and answers. At the time I thought it might be a good idea to gather everything I found into one place.



In 2011 WonderBaby teamed up with Perkins in order to provide more features and support for families through the internet. My original intent for the site was just to link to resources I found on the web, but before I knew it I was writing more and more about Ivan and all he had to teach us! I soon learned that other parents were experiencing this too... we all know that our children are full of wonder and they amaze us every day. As we focus on teaching our children all they need to learn in order to be as independent as possible we are often surprised to find out that we are learning so much from them!

If you want to share your story or have any ideas or advice for other parents, we'd love to hear it! Please contact us!

Marcus’ Story

Adapted from an old blog post by Sue of Lee Life and Lessons.

I’ll always remember October 2007. It was the month Marcus was diagnosed with Joubert Syndrome.

My pregnancy with him and his labor/delivery were uneventful. But when he wasn’t visually tracking and then developed an intermittent head tremor, we knew something was wrong. After seeing several specialists, we finally had him undergo an MRI and subsequently received the phone call that changed our lives. At worst, we had thought he had a vision impairment. But when the doctor told us of the diagnosis, she rattled off a list of challenges that “some – not all” children with JS face. So, in one phone conversation, we heard terms that no parent wants to hear: developmental delay, poor coordination, physical disability, mental retardation, vision loss, kidney failure. In her own words, she told us to rule out a “normal” life for our precious boy.



I remember Mike and I fell asleep in each other’s arms after crying and praying. How we got out of bed the next day remains a supernatural act of God because I felt like the news we heard the night before had strangled us to the point of suffocation. Even more miraculous is that we also went to the pumpkin patch that morning because we had already promised Audrey we would go. So we took pictures, cheered on Audrey in the bounce house, and picked pumpkins. Only the Lord knows how we got through it with smiles, when inside, our lungs had collapsed. It was purely the grace of God pumping oxygen in our bodies to be able to take each breath.
Marcus was 4 months old then and at that point had very little head control. He also had not developed his ocular motor strength/coordination at that point, so the possibility of blindness was still very real. His future was so uncertain and hope for him was very small. Needless to say, seeing a child in a wheelchair at the pumpkin patch made my soul drop even more. Later on that day, Mike went for a run and came back with tears after seeing a father teach his son to play baseball. We realized we wouldn’t be able to see the world the same again anymore.



One unexpected thing for me, that I didn’t expect, was how my identity would change. Being thrown into the world of special needs, I felt like I wasn’t just Marcus’ mom anymore. I was also his OT, PT, speech pathologist, psychologist, advocate, and nurse. I have often felt like I had to introduce myself to people as a mom of a child with special needs because it consumed my body, heart, and mind so much. But even though October 2007 has changed our lives forever, and though we can never go back to how it was before, and even though it is such a heart-wrenching and consuming journey, it’s so good to remember Galatians 2:20.

I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.

Although often forgotten, this verse has recently been a sweet reminder to us. Knowing that we are bought with the precious blood of Christ, and that He now owns our lives is a comfort. Remembering that it’s not about our life, but about His life in us, is a refreshing reality check. Seeing that we don’t have to live this life perfectly, but to live by faith instead, is reassuring. That He loved us and gave Himself on our behalf so that we wouldn’t have to be swallowed up by this life is a relief.



It’s been 2 years since then. Two years along in our Joubert Journey, which means we are still just running our first of many laps. But it’s amazing how much we’ve experienced and learned since then. The breathing is still purely by the grace of God. And though we often get angry we can’t just breathe easily on our own like we used to, it’s good to know that we need Him desperately and that He provides His grace lavishly.

The Masterpiece

A beautiful poem written for Kendall of Kendall's Hope
by one of her Special Education teachers.

I know this will make your day, so enjoy....

There’s a tiny piece of heaven who will breathe Earth’s air tonight
She’s the gift you prayed for when you prayed with all your might.
Straight from God’s own hand, a vision of His heart
Flawlessly designed by angels; she’s a perfect work of art

She’ll have mommy’s soft skin and daddy’s button nose
Perfect in every way from her head to her toes.
With big brown eyes and a dimpled chin
Curly brown hair and a sweet impish grin

What’s that you say…her legs are not strong?
Oh no, God said, you’ve got it all wrong
She will dance in your heart and soar with the wind
In her own time, you’ll be amazed at the races she’ll win.

Her eyes... you say, they cannot see?
But, she sees past the sadness and into the hearts
Of people who love her and make her a part
Of the beauty around her that she’s felt from the start.

Her voice is silent and you can’t hear a word?
Yet, she sings with a rhythm of a soft fragile bird
She speaks to your soul and whispers her love
On the wings of an eagle, with the grace of a dove.

A child so precious, and uniquely your own
Chosen by God, a gift from His throne
A little piece of Heaven meant all along
To fill your life with her strength, her sight and her song.

For Kendall Briggs
With love, Terri Limon

Primary and Secondary Therapies for Sensory Processing Disorder and other Issues

(....from Growing and In-Sync Child, by Carol Kranowitz and Joye Newman (Perigee 2010) and from a handout given to me by Carol Karnowitz when I attended her seminar on SPD, at Utah State University, in Logan, Utah; in 2010.)

Many of the individuals who have 7q11.23 Duplication or other syndromes or disabilites also have trouble with some aspect of Sensory Processing Disorder (SPD). SPD has also been referred to as Sensory Integration Disorder. The list below includes basic information about some professionals and their therapies that may benefit a child with Sensory Processing Disorder. For more details and information, see http://www.spdfoundation.net/.

But first, what is Sensory Processing Disorder?

Think of a developing child as a tree. The stronger the roots, the more nutrients will be absorbed, the more anchored the tree will be, and the sturdier the trunk and branches will grow. A child with strong roots is likely to grow into a sturdy, thriving, blossoming individual.



We think of a child's roots as having three major components - Sensory Processing skills, Perceptual Motor skills, and Visual skills. Sensory Processing Disorder occurs when these core areas are out of sync.

Sensory Processing involves touch, movement, and position senses. These are all primary to development. Tactile processing refers to touch or being touched by either a person or objects. Vestibular processing is taking in sensations about the pull of gravity through the inner ear and then responding to these sensations. And proprioceptive processing is the unconscious awareness of sensations coming from muscles and joints.

Perceptual Motor skills depend upon a sound sensory processing base. These skills include balance, bilateral coordination, body awareness, directionality, mid-line crossing, motor planning, and spatial awareness. Visual Processing is the interpretation and response to information received through the eyes. Some essential visual processing skills are acuity, binocularity, and visual tracking.

Primary Therapies

Occupational Therapy using a Sensory Integration Framework (OT-SI)

Professional: Occupational Therapist (OT)

The ideal OT is one who has received additional postgraduate training in sensory integration theory and treatment. The specific goals of occupational therapy using a (OT-SI) framework are to improve the person's social participation, self-esteem, self-regulation and sensory-motor abilities.

Under the guidance of a therapist, the child actively takes in movement and touch information in playful, meaningful, and natural ways that help his brain modulate these fundamental neural messages.

Physical Therapy

Professional: Physical Therapist

Is a therapy that is devoted to improving an individual's physical abilities. It involves activities that strengthen the child's muscular control and motor coordination, especially in large muscles.

Secondary Therapies (in alphabetical order)

Auditory Therapy, or Auditory Training

Professional: Audiologist, Speech-and-Language Therapist, Occupational Therapist, or other qualified specialist

A method of sound stimulation designed to improve a person's listening and communicative skills, learning capabilities, motor coordination, body awareness and self-esteem. Various methods employ the use of special headphones. Over several days, the child listens passively to music and voices filtered through the headphones and then participates in active voice work, such as repeating sounds, reading aloud, and conversing. therapy helps the ear to attend to and discriminate among sounds, the vestibular system to integrate sensory messages of balance and posture, and the person to become more focused, centered, and organized. The Therapeutic Listening Program, designed by Sheila Frick, OTR/L, is an excellent home program that is supervised by a therapist while the child is receiving services. See: http://www.tomatis.net/, or http://www.vitallinks.net/.

Brain Gym

Professional: Licensed Brain Gym Practitioner

The Brain Gym system is a set of 26 specific movements developed by Paul Dennison PHD, based on research in Educational Kinesiology. Educational Kinesiology studies education, child development, and physical movement of the human body as it relates to learning and expression skills. The system readies the body to learn by integrating visual, auditory, and kinesthetic functioning. It stimulates the nervous system equally in all brain parts, minimized one-sided brain reactions, and strengthens neural pathways between the two hemispheres. The activities effect rapid and often dramtic improvements in concentration, memory, reading, writing, organizing, listening, physical coordination, and more. See http://www.braingym.org/.

Chiropractic

Professional: Chiropractor

Chiropractic is the philosophy, art and science of detecting and correcting subluxation in the human body. Subluxation is a partial dislocation or abnormal movement of a bone in a joint. Chiropractic helps children with SPD by specifically addressing the structure and function of the nerves, muscles, and joints controlling posture and movement that influence our ability to interact with our environment. http://www.icpa4kids.com/ or www.chiroweb.com/find/children.html.

CranioSacral Therapy (CST)

Professional: Occupational Therapist, Physical Therapist, Chiropractor, Osteopath, Massage Therapist, or other Registered Craniosacral Practitioner (RCST)

CST is a gentle method of evaluating and enhancing the function of the craniosacral system (the membranes and cerebrospinal fluid that protect the brain and spinal cord). CST involves light touch manipulation of the bones in the skull, sacrum and coccyx to correct an imbalance that can adversely affect the development of the brain and spinal cord and can result in sensory, motor, and neurological dysfunction. Developed by Dr. John Upledger, CST is used by a variety of health care professionals. Contact: The Upledger Institute, http://www.upledger.com/ or http://www.craniosacraltherapy.org/.

Hippotherapy (therapy with a horse)

Professional: Certified Instructor

Hippotherapy means "treatment with the help of a horse." Occupational, physical and speech therapists use the horse as a modality to improve the posture, movement, neuro-motor function and sensory processing of people with disabilities. The movement of the horse, with traditional therapy intervention, influences muscle tone, encourages muscle action, and improves vestibular reactions, sensori-motor integration, and mid-line postural control. Contact North American Riding for the Handicapped Association, http://www.narha.org/ or Center for Equine Facilitated Therapy, http://www.nceft.org/, or Equine Assisted Growth and Learning Association, http://www.eagala.org/

Interactive Metronome

Professional: OT, SLP, PT, ATC, Educator, Psychiatrist, Neurologist, Psychologist, Chiropractic, Rehabilitation Professional or other Medical, and Mental Health Professional

Interactive metronome (IM) was developed in the early 1990s and is used to help children (and adults) with learning and developmental disorders, including auditory and sensory processing disorders, dyslexia and other learning disorders, autism spectrum disorders, attention deficit-hyperactivity disorder, Tourette's syndrome, stroke, traumatic brain injury, and more. IM is a neuro-motor assessment and treatment tool used in therapy to improve the neurological processes of motor planning and sequencing. Motor planning and sequencing are central to human activity. From The coordinated movements needed to walk, to the order of words in a sentence, planning and sequencing are critical to efficient human function. Interactive metronome improves motor planning and sequencing by using neuro-sensory and neuro-motor exercises developed to improve the brain's inherent ability to repair or remodel itself through a process called neuroplasticity. See http://www.interactivemetronome.com/.

Nutritional Therapy, Dietary Intervention

Professional: Nutritionist

Good nutrition is essential for development, efficient maintenance and functioning, optimum activity level, and resistance to infection and disease. A nutritionist can help a person with nutritional deficiencies achieve balance in carbohydrates, fats, protein, vitamins, minerals, and water. Contact: Autism Network for Dietary Intervention, http://www.autismndi.com/.

Perceptual Motor Therapy

Professional: Perceptual Motor Therapist

Perceptual motor therapy provides integrated movement experiences that remediate gross motor, fine motor, and visual perception problems. Activities, including sensory input techniques, stimulate left and right-brain communication to help the child interpret incoming information to the nervous system. Goals are to improve visual motor perception, develop more mature patterns of response to specific stimuli, improve motor skills and balance, and stimulate alternate routes to memory and sequencing for those children who do not respond to the methods taught in the conventional classroom. Contact: Kids Moving Co., http://www.kidsmovingco.com/.

Psychotherapy

Professional: Psychotherapy is sometimes appropriate, particularly if the child has behavior or self-image problems or is depressed. (Psychotherapy deals with the effects of SI disorder, but not the underlying causes.) Psychotherapies include behavioral therapy, to help the child deal with problematic symptoms and behaviors; family therapy to help the child, parents and siblings become a healthier unit; and play therapy, to promote the child's social-emotional development. See http://www.floortime.org/

Speech and Language Therapy

Professional: Speech / Language Pathologist (SLP)

Speech-language therapy includes activities designed to meet specific goals for the child. The child may need help with speech skills, such as pronouncing "L", "K", or "SH" sounds; monitoring the pitch of his voice; and strengthening oral-motor control in the muscles of his mouth. He may also benefit from activities designed to expand his language skills, such as retelling stories, conversing, and playing games to develop memory and vocabulary. As many children with SPD are picky eaters, therapy with a a speech pathologist trained in oral-motor and feeding issues may be very helpful. Indeed, when the child receives co-treatment simultaneously from and occupational therapist trained in this area, optimal benefits of getting in the mouth occur. Contact American Speech-Language-Hearing Association (ASHA), http://www.asha.org/.

Vision Therapy, or Vistion Training (VT)

Professional: Developmental (or Behavioral) Optometrist

Vision therapy, or optometric visual training, helps the person improve visual skills and can also prevent learning-related visual problems. Along with Lenses or prisms, VT helps the child integrate visual information with input from other senses, such as hearing, touching, and moving. A developmental optometrist provides sensory-motor and educational activities that strengthen eye-motor control, eye-hand coordination and depth perception, and help develop visual perception. Contact http://www.optometrists.org/; or Optometric Extension Program Foundation: http://www.oepf.org/, or Parents Active for Vision Education; http://www.pavevison.org/.

Invisiboard

One of my favorite sensory tools for Caleb is the invisiboard. The website states: Block out distractions for students with Cortical Visual Impairment. This 48 by 30 inch, tri-fold board eliminates visual clutter with a solid white, slick material on one side and a solid black, Velcro compatible material on the other.

I love using this board with Caleb. I can surround him with a black background and give his eye the opportunity to focus on one thing. Right now we are focusing on items that are mostly yellow or reflective.
Just like the invisiboard helps me to reduce visual clutter for Caleb... Caleb reduces worldly clutter for me. He teaches me to be more reflective. He teaches me to focus on what matters most.

Thank you Caleb, for teaching me to truly see.


You can find more information about the invisiboard here and here
For some more great sensory ideas, visit Heidi's adaptations blog.

Born of My Heart

by Brandi from the blog Born of My Heart.

Brandon and I (Brandi) tried to conceive for five years. Years of doctor appointments, infertility drugs, and negative preganancy tests were just too much to handle. We started praying about adoption. We began to look into agencies, and we became foster parents. The next two years flew by. We had two failed adoptions that were both heartbreaking, so we decided to put adoption on hold for a while.

That's when I read my email. A wonderful woman, whom we had worked with in adoption before, asked us to view the profile of a special needs little boy. We did. We saw his picture and fell in love in what we knew was our son. ~~~There is defiantly more to this story but that is another story in and of itself~~~

Joshua Matthew Lee became our son on September 17, 2009. He had a tragic little life and needed lots of love. Matthew (as we call him) was born on time, perfectly healthy! He went home to his first adoptive parents at two days old (my birthday) and was their miracle boy. At three months of age Matthew was not meeting his milestones. He was not making eye contact, had very little head control, and did not smile. An MRI then showed what would become the beginning of his diagnoses. Matthew has Agenesis of the Corpus Callosum, Agenesis of the Septum Pellucidum, Septo Optic Displaysia, Cortical Visual Impairment, Optic Nerve Hypoplasia, Epilepsy, Cerbral Palsy, Low Tone, Photophobia, Bilalteral Schizencephaly, and global developmental delays.



Matthew's first adoptive family did not feel they could parent a special needs child. After seven weeks in private foster care, we brought Matthew home. Our sweet boy is a miracle. We were told he would not smile socially~he laughs. We were told he would never make eye contact~~he tries. We were informed he would never be mobile~~we have video of him attempting to crawl. Matthew is now seventeen months old. He still has little head control. He has 100+ seizures daily even with two anti seizure meds and the Ketogenic diet. Developmentally he is still an infant. But labels have never been our "thing." We choose to see him for the beautiful, sweet, kind hearted boy who enjoys laughing while his sister cries. He will hold your hand and in doing so grab hold of your heart.

Little did we know, but eleven days after we brought Matthew home, his sister was born. Lillian Autumn Grace was born anywhere between 28-32 weeks gestation and addicted to cocaine. Her birthmom relinquished rights and Autumn (as we call her) was available for adoption. We knew about her, but were not in a position to adopt so soon. We prayed for her. She was a rockstar. She stayed just over six months in the NICU before finally being discharged in March. Autumn was born addicted to drugs and had failure to thrive. She was a measly 3 lbs 4 oz at birth. She had suffered a stroke to her spine in utero that has left her paraplegic. Her legs are "deformed" and her feet are clubbed. She has undergone three surgeries to correct the strictures that were in her intestines, and has sailed through them all.



In March our prayers were answered, and we knew Autumn was our daughter. We became a family of four in April 2010. Autumn is cognitively intact and is blossoming. She is still quite small for her age, but is crawling everywhere. She will not be able to correct the deformity in her legs or her clubbed feet and will never walk. She will not let that hold her back. Next week she turns a year old. We are constantly reminded at just how beautiful and fragile life is when looking at our blessed babies.



We never intended to adopt special needs children. All we knew was we were meant to be a mommy and a daddy. We now know that our children have taught us more than we ever knew possible.

Better for Knowing Her

by Adriane of Our Story.


Greetings! My name is Adriane, and I am married to a wonderful guy, Nathan, who serves our country as a pilot in the Marine Corps. We have been married 8 years and lived in 5 different states during that time; we're currently calling the tar-heel state of North Carolina our home-sweet-home.

I was 26 years old when we found out that a second child would come into our family. Our first was 5 months old at that time; a pretty little baby named Sade. We were very excited at the prospect of having two little girls causing chaos and stealing hearts together. Our first daughter had been a very uncomplicated, run-of-the-mill pregnancy and delivery. I had lost a child from a previous marriage, so we felt very blessed to have her. We also foolishly thought that since I had previously undergone that painful loss, we were "in the clear", heartache-wise. I paid my life-lesson dues, right? No more sessions needed.

Although we had no reason to suspect a problem with this second pregnancy, I found myself feeling more anxious about this child's well-being. Just an under-the-surface uneasiness, so subconscious that although my husband felt the same thing, we never even brought it up. But I had a handful of sonograms done just to "make sure" that she was fine. And aside from my little peanut girl being in breech position, everything was.

Near the end of my pregnancy, we decided to have a procedure done to turn our baby - newly named Kylee - into the correct position. I was hesitant about it, but after repeated reassurances by my OB and with the thought of a dreaded c-section looming in my mind, we agreed to the plan. The version was done so quickly and seemingly-effortlessly that I laughed at myself for being so foolishly nervous.

I went into labor at 3 am on February 25, 2006. Nathan and I relaxed as the epidural took effect, chatting and dozing while we waited. We believed the labor was progressing like clockwork. Finally it was time; I cheerfully started pushing Kylee, eager to see her beautiful face for the first time. Looking back I realize that those were the last moments of what we refer to as our "former life"; a peaceful, carefree stroll through sunshine-filled days and sleep-filled nights. In an instant, everything changed. There was my OB, placing and internal monitor, pushing my bed out into the hall and shouting at nurses to prepare the OR. There were the nurses, scrambling to prep trays and equipment. There was the anesthesiologist, pushing meds and placing an oxygen mask. And there was the most horrible sensation of being ripped in half. Finally, there was Nathan, mirroring my look of shock and confusion.

"Come here, little girl" the OB said, and I expected to see a squirmy pink baby placed on the infant warmer to my right. Instead, I saw a tiny, lifeless, blue body. No, this can't be right. I watched as the pediatrician resuscitated Kylee, intubating her, and whisking her away to the NICU.



An hour or more later, when my involuntary, pain-induced tremors had stopped and I realized that indeed I would live, I visited my Kylee. My "NICU baby". As a nurse, the sight of monitors, IV's, tubes, etc was old hat. As a mother, I had also seen this before, and it wasn't a memory I had intended to relive. "She'll be fine" I told myself, although she also was racked with tremors - seizures, per the nurses.

Kylee was flown to another NICU, and stayed there for nearly 8 weeks. There we learned of the pervasive hypoxic-induced brain injury, labeled "moderately severe". More diagnoses followed shortly thereafter: hypoxic-ischemic encephalopathy, laryngomalacia, GERD, seizure disorder, dysphagia, cortical vision impairment... Still, we didn't understand the enormity of our situation. Denial, I guess. Kylee never demonstrated a suck or swallow reflex, and so had a g-tube placed along with a nissen fundoplication to stop the refluxing formula cascade from her nose and mouth. The official cause of her traumatic birth was ruled to be cord compression, although no visible evidence (knots, nuchal looping) was apparent.

We spent five days at home - five sleepless days setting up equipment (feeding pump, suction equipment, apnea monitor), meds, schedules, and moving her "room" to the living room, because there was no way she could share her older sister's bedroom now. We watched as her pale skin grew paler, and as her labored breathing grew shallower. Finally we rushed her back to the hospital to note an oxygen saturation rate of 50%, where she stopped breathing altogether and was again resuscitated by the same pediatrician that saved her life on d-day. She spent another month in yet another hospital, and was eventually released with home oxygen, an oxygen saturation monitor to replace the apnea one, and in-home nursing at night.



We were given hopeless prognoses and told to enjoy our life with our baby as long as we could. But what followed was not death, it was a new life. A life of doctors' visits, therapy schedules, and hospital stays - 20, to date - and of more diagnoses; chronic pneumonia, infantile spasms, hip dysplasia, osteopenia, reactive airway disease. A life of learning about cerebral palsy - Kylee's "umbrella" diagnosis, about what kind of child she would be, and about the new world we had joined. Many had joined it before, and it helped to know that although this place was less populated, there were still friends there.

After Kylee's birth, we felt like we had literally fallen into a black hole; the deepest abyss on Earth. I prayed but felt nothing but sadness and despair, and I wondered why Heavenly Father had left us.

On one occasion, I found myself sitting alone in my car. I had just kissed Kylee goodbye in the large Children's hospital where she was staying, and prepared to pick up Sade from her Grandma's house. Nathan was in our hometown as he had to return to work and school. I realized as I sat there, that each of us had been separated by this event, and that the attempts to be with my two girls in their two separate places was killing me. This wasn't how families were supposed to be. I admittedly cried - that kind of heart-broken, unrestrained cry that comes from weeks of suffering.

No sooner had my emotions overcome me than I instantly felt at peace. I felt like some unseen force had practically touched me and taken away my sadness, bringing me instant comfort and drying my tears. I realized that this was Heavenly Father's comfort, and that He was indeed with us. He hadn't left; I just hadn't been able to see Him from where I was standing. Slowly our understanding grew, as well as our ability to acclimate to our new life. We realized that our daughter was injured very severely - unable to reach out even one arm, unable to play with a toy, unable to hold up her own head. I admit that ever milestone she missed, every evaluation that ranked her as a "newborn" despite her progressing age, was very hard to note. But I also started to see Kylee for who she really was - not a medical creature to be diagnosed and tested and treated, but a perfect, innocent, angelic spirit. My frequent prayers that she be able to communicate were answered, as Kylee can express herself in her own ways - smiling, crying, making some verbal sounds, and providing minute changes in facial expression or posture that let us glimpse into her thoughts.

Kylee loves being held. She loves being snuggled and kissed. She adores watching other kids - most especially her older sister, who enjoys a very typical affectionate/jealous relationship with her younger sibling.



Kylee demands attention and entertainment; boring as easily as any other four year old. Swimming, swinging in the hammock, going to special-ed preschool, listening to favorite songs, getting tickled, bath time, and bedtime massages are favored activities. Yes, she is a lot of work. But we realize that "where much is given, much is required" - and that in order to be blessed with such a beautiful, beloved child we have to put in a little more effort for the privilege.



Life is "normal" for us now. I really don't even remember what life in that former world was like. I know I wouldn't trade Kylee for it; I wouldn't trade her for anything in existence. I think of what happened in comparison to riding on a train. We had been quietly riding along on our passenger train of life, taking in the scenery, when BAM! The whole darn thing derailed. That train received some significant damage, and the repairs took some time. But month by month, and year by year, it again started to head for the previous destination. And pretty soon, the people on board were chatting and carrying on nearly as before, practically as if they had forgotten the mishap. Except for the fact that they were all wearing bandages. And that this time, we refused to ride. We drove.

I will never know if I could have prevented her injury by having a scheduled c-section instead of a version. I will never know if her cord was pinched by her shoulder, squeezed by her fist, or pinned somewhere else by her body. I will never know if turning Kylee moved that cord into a compromising position or set up the chain of future events that unfolded. I will never know if having a different medical course early on - infant cooling, cord blood reinfusion, or earlier at-
home oxygen - would have caused a more favorable outcome in her abilities today. But I do know without one shred of doubt, that Kylee is living the life that was intended for her, that I love her more than could be imagined, that we are blessed to have her, and that she is making each of us, individually, a better person for knowing her.

Fearfully and Wonderfully Made

Psalm 139: 13-18
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.


In the fall of 2006 we found out that we were expecting our third child. The pregnancy went pretty well, despite extreme morning sickness. The sonogram looked great and we found out that we were having our third boy!

On April 17, our third son, Brayden, joined our family. The day after he was born, concerns about the size of his head were expressed. His head was extremely small; it did not make it on the growth chart. Tests were done for exploration. He appeared to being doing well, we thought all of the tests were precautionary and everything was fine. Brayden had a head ultrasound and it revealed that he was missing part of his brain and had additional abnormalities. The ultrasound could not provide a clear picture and we were instructed to schedule a MRI to review his brain in further detail after he was three months of age. Thankfully Brayden was nursing well and he was able to come home with us.The next few months were filled with tests and specialists. All of his major organs needed to be checked to rule out additional complications. We saw just about all of his insides, all of which were functioning and doing well. The big test was the brain MRI. The MRI revealed that Brayden’s brain was missing parts and the rest was abnormal. Today we are still learning what all of this will mean for his life.



Brayden struggles with seizures and we try to regulate them with medication. He is severely visually impaired. Brayden has a G-J tube and is feed by j-tube (into his intestines) for about 20 hours a day. He struggles with chronic vomiting and we have been in and out of the hospital for it...alot. But at home we pump his stomach, by a big suction machine, several times a day for about 30 minutes. Developmentally he is close to a newborn. He cannot hold his head for more than a few seconds. He needs constant full support.

Brayden sees a list of doctors and specialists on a regular basis: neurologist, ophthalmologist, occupational therapist, physical therapist, feeding therapist, vision therapist.

One of the big questions is his condition, handicap, label, etc…Well, it all depends on which doctor we are seeing and what part of his body that particular doctor is looking at. Brayden has a lot of things going on and here is what we have figured out so far (don’t worry if you have no idea what the terms mean, you can google). We have learned that the doctors, therapists, and insurance use these fancy labels to get Brayden services, treatment or therapy but not one single term describes Brayden.

· To the neurologist: ACC, seizure disorder, cerebral dysgensis, microcephaly, pontocerebellar hypoplasia
· To the occupational and physical therapists: cerebral palsy, developmental delays, mixed muscle tone
· To the ophthalmologist and vision therapist: visual impairment, optic nerve hypoplasia
· To the GI doctor and feeding therapist: feeding difficulties, G-J tube, chronic vomiting

Brayden has a a lot going on and we are still trying to understand what all of this means. Thus my journey is understanding it all.

A list of Brayden's diagnosis:

Brain
Agenesis of the Corpus Collseum (ACC)
Microcephaly
Seizure disorder – partial complex seizures
Cerebral dysgensis
Pontocerebellar hypoplasia
Cerebral palsy
Nonambulatory

GI
G-tube, mickey button since April 2008
G-tube replaced with G-J tube Sept 2008
Delayed gastric emptying
Chronic vomiting
GE reflux

Eyes
Visual impairment
Optic nerve hypoplasia

Read more about Brayden and his mom, Carrie, on their blog.

Kendall's Hope

"When the world says "Give up," Hope whispers, "Try one more time." ~Author Unknown

Somewhere I heard the quote "The end of a matter is more important than the beginning." Not sure where I read/heard it, but I like it. It definitely pertains to my darling Kendall. It doesn't matter where, when, or why all of her issues started, what really matters is that we cherish every single day we have with her, and every single milestone she hits. As a family we have come a very long way with acceptance. I can honestly say I wake up in the morning happy again. There were quite a few dark days in the past year when that wasn't the case. But, like every other hurdle in life, you keep on trucking, and eventually you get through it. You become stronger in the process. Justin and I have become closer. Kamden has learned patience. I have witnessed my 8 year old's faith evolve. He has an amazing understanding of the world and a relationship with the Lord. We have all learned how to pray. As a mother, I now treasure everything most parents take for granted in my children. And while I know we will continue to have occasional dark days, or self pity days, they seem to be spacing out.

I have decided to do a post that recaps Kendall's medical issues from the beginning. Mostly, so I can refer back to this all in one place. I wish every time we went to a new Dr. or had to go through Kendall's history, I could say "check my blog!" But that's not the case. Maybe this will help someone out there who, God forbid is in a similar situation. I also want to link all the medical terms to sites that explain them well. It will help me to gather my thoughts and our most recent findings with her clotting issues. I'll try to give the Reader's Digest version, but I've never been very good at giving the short story. Once I have this out, I vow to myself to focus on the "end of the matter" and stop wondering the dreaded "what if's." So here goes.

My son was born 7 years before Kendall with no issues. He was text book! My water broke at home on his due date. I went into labor on my own, and had a natural birth. My pregnancy with Kendall was more or less uneventful. I was 29 years old with no history of any health problems. My blood pressure was fine. I am RH negative, so in both pregnancies I took the needed injections. Toward the end of my pregnancy, there was protein in my urine, but I was assured that was OK as long as there weren't any issues with my blood pressure. Kendall was in a Breech position pretty much every time I had a sonogram.


At a routine sonogram around 28 weeks, they noted "enlarged ventricles." My Dr. didn't seem too concerned, but did refer me to a perinatologist. My whole family went into a tail spin with worry! But in the back of my mind, I thought everything would be OK since we had relatively healthy people in our family. The next day we were fit into the Perinatologist. He was a little man with annoying habits. I hated him from the beginning. He said her ventricles were "borderline enlarged" at only 12 mm and we were going to watch them. HOWEVER, she had two white spots in her heart...calcifications...and a hole in her heart. He said there was a chance she had Downs, and recommended an Amnio. He said we could abort, but there was only one state that would do it and we would have to move quickly. I remember looking at him, seeing his lips move, but no sound coming out, and everything was in slow motion. He left for a minute and told us to think about it. There was no thinking required. Before we got pregnant, we knew we would love our child no matter what. We declined the amnio and of course, the abortion. He came back in, we gave him our decision, and he handed us a card for a scheduled EKG at Children's Hospital. We went home and I cried for the next 2 days. I discovered the Internet and learned more about the heart than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

We went for the EKG and received the results the same day. Her heart was perfectly normal. A month later we went back to the perinatologist for a follow up. My mom was with me, Justin at work. That day he did a sonogram, and came back in putting on the same show. He looked like he was giving a speech to a group of medical students. He asked if my mother was my sister (clearly...she isn't....she had me when she was 38....although she looks great for her age...clearly....NOT my sister....so that just pissed me off. This wasn't a time for jokes.) I was expecting a clean bill of health, but that's not what I got. She still had "borderline ventriculomegaly" and a possible "arachnoid cyst." This time we were too late to abort, and he returned with a card to go to Children's Medical Center for an MRI. I cried at the checkout desk scheduling the appointment. Before we made it to the car, I felt I was living a bad dream. My sadness quickly turned to anger. Anger because he had already sent us on a wild goose chase with her heart, and I wasn't going to go through it again. I was firing him! He didn't know what he was talking about! He was the WORST Dr. on the planet! But still, I went home, jumped on the Internet, learned more about the brain than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

After letting it sink in for a few days, I called my OB and asked to be referred to another perinatologist. My nurse was wonderful and encouraging. My Dr. sent me to the Dr. his wife went to. It was a longer drive, but worth it. Within a week, we had a second opinion from a well-regarded Dr. who had bad breath, but didn't piss me off. He reviewed everything, performed a long sonogram, and said everything looked fine...but she may have a club foot. In retrospect, a club foot would have been great! We breathed a sigh of relief and enjoyed the rest of our pregnancy. Kamden was excited about his baby sister. He drew pictures of her (and being the gifted and talented kid he is...drew her with a club foot in all of them.) Our angel never turned, so I was scheduled for a c-section.

Kendall was born on a Sunday morning. She didn't have a club foot. Emails and text messages were sent out stating everything was fine. She had an apgar score of 10. She latched on to breastfeed immediately. She was small 5 lb. 12 oz. Her head was also small. But she received a clean bill of health from everyone in the hospital. She even passed her eye exam!?!?!? We went home 2 days later with our bundle of joy...prepared for sleepless nights.

The next 2 months, I enjoyed my Maternity Leave. I recovered from my c-section, breast-feeding was going great, and I was focused on losing the 65 pounds I gained with my 6lb baby! She was the best baby. She had a few nights with crying fits, but all in all, she was so mellow. She slept a lot. Her eyes were always a bit shaky, but I must have asked the Dr. 100 times if that was normal! In the back of my mind, I knew it wasn't but I didn't want to think about it. Everything was going so great. Then one evening, we placed her down to go to sleep and she had a series of startles. She did it 3 times in a row. I knew this wasn't normal and called the Dr. the next day.

At that appointment I insisted he look at her eyes. She never made eye contact. Something was off. We left there and immediately went to a Pediatric Ophthalmologist. She was diagnosed with bilateral congenital cataracts. Surgery was scheduled for the next week for the left eye, then the following week for the right eye. I went home, jumped on the Internet and learned more about the eyes than I ever wanted to know. I found the best case scenario, the worst case scenario, and prayed.




She recovered from her surgeries was fitted for glasses weeks later, but still wasn't tracking. We thought there may still be something wrong with her vision even though during her examination under anesthesia they said her optic nerve was fine and everything else was intact. She wasn't rolling or reaching, but we blamed that on her vision! We started ECI services with Vision Instruction and Orientation and Mobility through our school district. We also added PT since she wasn't really moving.

She went for a routine evaluation at our pediatrician's office. Her head circumference was small, but was growing along the curve. They were a bit concerned. We mentioned a shaking of her foot on occasion and absent stares and head drops she was exhibiting. Soon after we left with a referral to a Neurologist and the label Microcephaly. We scheduled an EEG and an MRI. We also had the EEG followed by an appointment with the Neurologist. Her EEG was abnormal, he said she had high tone, and wanted to have a 24 hour video EEG done the following week. Of course I went home jumped on the Internet, researched everything I could about abnormal EEG's, abnormal tone, seizures, and you guessed it. I knew everything there was to know about Cerebral Palsy. I found the best case scenario, worst case scenario, and prayed!!!



At the hospital following her video EEG, we were told she did not have seizures, but they were going to go ahead and move the MRI appointment for the next morning since we were already there. She got general anesthesia for the third time in her short 5 months of life. When the results were in, they escorted us back to our room. We knew something was up when the train of Dr.'s walked us to the viewing room. The Dr. on call told us she had a large cyst in her brain, possibly on 2 sides, and we should start therapy and familiarize ourselves with the term Cerebral Palsy (ha! I already had!) We went home thinking a left sided weakness was the end of the world. Our next neurologist appointment wasn't for another 5 months. That wouldn't do, so I called the nurse. I explained that we didn't understand and the 5 minutes the Dr. on call spent with us wasn't going to hack it. She told me Kendall had damage all over her brain. I cried on the phone with her and she was able to move our appointment up to the next week.

At that appointment we were told Kendall had a bilateral stroke on both sides of her brain. She had two Porencephalic Cysts that were compatible with a hypoxic/ischemic brain injury. She would never be normal. She wouldn't walk, see, or talk. She would be "mentally retarted." We cried with the Dr. and went home.

The weeks following I did a lot of research on plasticity of the brain. I also asked a lot of questions about why this happened. I found incredible support and information on Yahoo message boards (my list of them got so extensive, I finally had to unsubscribe!) I learned about seizures through my Microcephaly group. Kendall continued the next few months with the "startles" that to me resembled videos of Infantile Spasms I had seen. Two more video EEG's finally diagnosed her with Infantile Spasms. That is where our current search for the right seizure medication began.

A group I found called the "Pediatric Stroke Network" helped me discover Kendall's possible cause of her stroke in utero. Apparently she has the Factor V Leiden Mutation, two copies of the MTHFR gene, and her Homocystene levels are high. These are inherited from both Justin and I. I have tested positive for the Factor V, and Justin and I both have MTHFR. We have decided not to have my son tested in fear that it would be a pre-existing condition that would interfere with him obtaining life insurance in the future. We are all starting on an aspirin a day. And we will make sure we tell Dr.'s in the future if we have any surgeries or increased risk of blood clots. In a weird way, finding out a possible reason for Kendall's stroke has helped me move forward. I don't research causes on the Internet anymore. I mainly focus on therapy and equipment and how others with similar diagnosis cope day to day.

So that's it. The "beginning of our matter." We are blessed with a beautifully unique little girl,a true fighter, with a smile that lights up a room, a laugh that lifts your spirits on the toughest of days, and a whole new outlook on life.



Thank you Kendall. We know you are going to surprise everyone with what you are able to overcome!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

When I orignally wrote this... I was praying I wouldn't have to update...like ever. Unfortuately for us, 2 weeks ago on (August 24th 2009 at 16 months old) Kendall had really high blood sugars and was admitted to the hospital, only to be diagnosed with Type 1 Diabetes. (the auto-immune flavor) Oddly enough this result was a relief for us because it meant she didn't have Mitochondrial Disease...

Currently her blood sugars are evening out, and seizures remain semi-controlled on the Ketogenic Diet. She failed Topamax, Vigabatrin, and Keppra so the reduced seizures are welcomed, even though it has complicated the Diabetes Treatment! Our Endocrine and Neurology teams at Cook Childrens are working together to provide the best treatment for Kendall. She now smiles and laughs, rolls, and reaches, and is days away (I believe) from sitting on her own! Hard work and perserverence will pay off. We are blessed.



Read more about Kendall on her blog Kendall's Hope.

Try This Tuesday: Sensory Rooms

Hello I am Amber and I am one of the Kidz Krew members. I am a SAHM of 4 wonderful kids. Each of my children are a blessing to me and each one hold there very own unique design about them. Trey is my Good Helper and loving big brother, Jordan is of course my lil momma sassy girl girl, Lance is my feisty athletic type, and Brandon is my angel on earth, my special needs baby.

All of them have shown me great things in this life and because of them I am a better person. So who am i now well lets see..... I am Amber I love to read, blog, be with my family, and love life in General. I am great to talk to I love to be able to help others. I have been happily married to the man of my dreams for 6yrs now. We live in the country in a small town called De Queen, Arkansas. Its nice and peaceful and not alot goes on here but I love small towns. If you would like to know more about me or my wonderful family please stop by and view my sons site.....www.prayforbrandon.org and feel free to drop us a note.

I wanted to share with you something I posted awhile back on Brandon's Blog.

Well as some of you may have heard we have been accepted for Make a Wish program. Part of the wish I want is called a Sensory Room area. I found some really cool videos on this and will share them with you soon. I have seen how sensory rooms effect Brandon because we have certain areas in the house like his bed we have a twilight turtle a friend bought him for his birthday that lights the room with stars...

We have a seahorse that another friend got him that plays music and sounds like bubbles and water.

He has a music box with all different sounds that help him feel relaxed and calm

He is light sensitive and visually impaired so dimmed areas of the house with a movie or not bright lights make him happy.

At school they have different areas for him they call it his quiet area where he goes when too much is going on and he gets upset. They have different feel and touch things on the wall, they have a mirror just different things for him. I love that and with a house of 6 I think he will benefit from this if we had a area in our house for just him.

So let me explain what a Sensory Area Room is :
a place where your child can go to relax, explore, and find new ways to communicate.

I got this from this site to help you better understand what a sensory room really is:

http://www.sensory-processing-disorder.com/sensory-room.html

By the term "sensory room", we are talking about a specific room, with specific sensory equipment and activities, to benefit specific sensory processing difficulties. The room must be tailored to one's specific sensory needs just the same as, for example, you purchase a mattress and/or pillow. Some people will prefer a firm mattress and firm pillow, some prefer a soft mattress and soft pillow, and some prefer a combination, soft mattress with a hard pillow or vice versa.

Although a sensory room will be tailored to address an individual's unique needs, (and ideally would be set up with input from a knowledgeable professional such as an occupational therapist) there is also certain equipment which can have therapeutic sensory system effects on most anyone.

There is a lot of good information on that site that is very helpful to you if you are more interested in.

Its a therapeutic way of learning while in a good frame of mind. To me it would be like a day in the spa for us. So just watch the videos and find out how you can do this for your children to. Oh just a reminder I only want a part of a room made for him like this the rest I have other ideas for the rest of it lol wait and see them on the next post.

Silent Angel

About Jophie
by Jophie's mom Trina

In 1993 I had just completed my foster parent training. Little did I know that just a few minutes from my home a sweet baby was being born. That baby would soon become my son.

Jophie was born April 9, 1993. I received my foster parent license in the mail on May the 8th and on May the 9th just one month after his birth I received that call.

At 26 I was very nervous to be going to "just peek" at this sweet but very ill baby boy. This would be my first foster child and a baby at that! The next 30 minutes driving towards the hospital seemed like an eternity.

Brain damaged

Vegetable

Medically Fragile

CT Scans show sporadic damage

Guarded Life Expectancy

That was just a few of the words I would hear that day.

Did I hear those words?

Yes.....Sort of.

My eyes could not get past that beautiful baby lying there. His eyes and that hair....Oh my! There was so much more to him than all those big words and tests. He was small at just under 5 pounds. Small but mighty would soon outline the life of one baby boy who many thought had a grim future.

Yes! He was indeed about to show the world just how much more there was to him!

As we began our journey together, it became apparent to me that we were on no ordinary road to say the least. In the beginning the road was full of many bumps as we battled seizures, severe spasticity, feeding issues, many screaming sleepless nights and days as he battled drug and alcohol withdraws.

On February 11, 1997 just 2 months before his 5th birthday, I made this perfect little boy my son and so began our journey as mother and son with a much bumpier road full of its own share of curves, twists, and turns.

His health began to fail slowly but steadily as even more problems began to tumble into the mix. He began having numerous infections, pneumonia's, and rashes of unknown origin. The severity of his cerebral palsy and brain damage were becoming more evident with his age as he appeared to "stand still" in time cognitively. His motor skills were almost non-existent.

At this time it was determined he portrayed skills that of a newborn to 6 month old. Many tests and feeding studies were performed to check for reflux and aspiration as we felt he was doing both based on the chronic lung infections. The tests continued to prove non-conclusive.

By the age of 5 he became infected with varicella pneumonia from the chicken pox vaccine. YES it is unusual but it was what it was. I still thank God every day for my dear friend and sons pediatrician for listening to my heartfelt plea from his hospital room that early 3:00 a.m. morning. Even when the attending doctors felt I was wrong she believed me when I said, "He's dying before my very eyes". Sherries love for Jophie would prove to save his life that day. Thank you my dear friend!

Less than 6 hours later he was being rushed to the PICU in DIC(Disseminating Inter vascular Coagulation), shock as well as a severe case of chicken pox outside and within his lungs. Every breath would prove to rupture those blisters spreading it even more. His respiration's were in excess of 80, his heart rate was zooming. My baby was slipping away fast.

Papers were being shoved in my face. Sign this

Sign that

"Do you want us to save him?

"Is he a full code?"

Extraordinary measures taken?

Can we give blood if we need to?

Those were the questions being tossed at me as they gently guided me from his room.

One last kiss and one last "I love you" were what I thought would be my last.

Hours later by the grace of God AGAIN......Jophie was stable but very critical
He would remain critical for several days which led into weeks and then months. This was by far one of the worst emotional roller coaster rides we had been on thus far.

Over the course of time he would prove to not just me but to many doctors, nurses, and onlookers just how strong a fighter he was and indeed how powerful our God really is. God moved mountains for Jophie and changed many lives during that hospital stay including mine.

The next few months things settled down a bit. He continued to battle chronic pneumonias, infections, and sometimes rare/odd super bugs however, we made the best of it and were able to make some wonderful memories!

By the time he was nearing 6 the pneumonias and infections were pretty much constant. Feeding was becoming more of an issue. Don't get me wrong Jophie LOVED food! His favorites were cotton candy yogurt, pintos and cheese from taco bell....(TONS of sour cream please!) :O) In fact I had just introduced him to chicken nuggets, cheese burgers, chili, and spaghetti! I had found a way to grind up just about anything with a combination of bread and apple sauce making it possible for him to eat.

Just beyond 6 years he was literally bombarded again with not one but 2 super bugs. Staph E. and enterobactor....UGH! By this time in his life, infectious disease had become our closest friends. Jophie continued to be named in their medical books for oddities and super bugs.(I would have rather he been anonymous).

Regardless, this hospital stay lasted nearly 6 months and once again he would meet face to face with death. The super bugs that he had were not only found in his blood but also in the cultures from his lungs. The only way for those to be there would be from aspiration. It was determined that testing be done again for the reflux and aspiration. The testing did indeed prove he was and most likely had been since the age of 2 ("Silently aspirating and refluxing") It had went undetected until that moment.

My world so I thought stopped. The one and only thing that Jophie and I could do together that was "normal" was eating and they were about to take that from us. I fought and wrestled with God. NO! I did not want this to happen. Don't take away the only "normal" thing we can do together. He enjoys eating so much!.

Finally, after tons of praying, struggling, fighting and arguing with God literally, I realized it was either this or he was going to die. My focus switched very quickly to being thankful for his life. I also knew that even though we had been dealt another blow, with my help Jophie would learn to adapt and we both would come out better and stronger than before!

All food at that time was stopped forever, a central line was placed, TONS of steroids were put on board for healing his lungs, many big gun antibiotics to battle these 2 bugs were being used AND TPN and Lipids were started to sustain him until which time he could recover enough for surgery.

The plan was to perform a fundoplication(Wrap the esophagus around itself to stop the refluxing and aspirating), place a feeding tube and cut the muscle where the intestines meet the stomach to create quicker dumping.

Without all the food and liquid that his little lungs had grown so accustomed to, his body slowly began to heal. When he showed what we felt was the best improvement, his surgery was scheduled. That 2 hour surgery turned into 12 because of many complications. The surgeon was able to perform all but one of the procedures. She was unable to cut the muscle for quicker dumping due to time spent under anesthesia, lack of access due to his misshapen back/chest, and scar tissue from damage sustained over the years.

Jophie healed slowly after surgery due to his puny state to begin with and by the first of the year we were able to return home. At home IV therapy was continued via his central line by me for the next 6 weeks. We had to continue for 6 more weeks after that because his blood was still testing positive for the staph E. Finally, all blood work came back negative and his central line was pulled.

During the summer/fall of 2004, Jophie would spend nearly 5 months hospitalized facing death toe to toe once again.

During this stay he would be infected with Proteus Morabilis TWICE, Pseudomonas, Stenotrophomonis Maltophilia, A pleural effusion and thank God it resolved itself, An AVM(Arterial Vascular Malformation) which caused a GI bleed and surgery was required to repair it, Paraflu(Which we both had for 2 weeks), Psueodomonis became active AGAIN, many allergic reactions to antibiotics, Tons of side effects, withdrawals, rashes, severe diarrhea, Neutropenia(Low white count), Pancytopenia(Low white count, red count, and platelets), blood transfusions, adrenal failure, AND finally home! Phew! What a Ride!

One year later he was still trying to recover. His body was battered, much weaker, and we continued to control break through seizures that at one time were mostly controlled and were unable to fully wean him from the very steroids that saved his life. We now fear his adrenals have failed because of it. We're hopeful the adrenals will begin working on their own again but, until that time the steroids that have caused this problem are once again saving his life.

Two years later in 2006 he would be hospitalized with Mycoplasma and C-Diff. Fortunately, I was able to bring him home after only a weeks stay. I along with Jophie's nurses would continue a 6 week long treatment regimen to kill those nasty bugs. It was during this time that I finally accepted the fact that I just couldn't keep track of all his medications. The many medications he was taking multiple times during the day made that abundantly clear. I usually manage just fine however, when he is ill you have to add the "extras" on TOP of what he already is taking and that's when my eyes begin to cross. The solution. A dry erase board mounted on my living room wall.:0)

March 2008 would prove to be another life altering hospital stay. After nearly going into respiratory failure, Jophie was transported via ambulance to the hospital where he landed in the PICU for the next 3 weeks in very critical condition.

Over the years Jophie's back/shape has gotten much worse making it next to impossible to treat him during a crisis. Fortunately, the wonderful PICU docs and staff were able to stabilize him on CPAP rather than placing him on the vent. He responded very well to this treatment and it would prove to save his life.

Tests would reveal an active Pseudomonas again. For those of you who haven't followed Jophie, he is colonized with Pseudomonas meaning it never goes away but rather goes into an inactive state. The plan is to keep those evil bug colonies down to a small number all the while trying to build up Jophie's good army who are in a constant battle to keep those evil ones at bay! I like to think of it as dragon slaying. Now if I could just find me a knight to slay these dragons we might be in business ;)

Because of Jophie's misshapen body and the poor state of his overall health it was determined that a trach was in order to prolong his life, give him a better quality as well as make it possible to effectively treat him during a crisis all of which I felt were very important if not life sustaining. What I didn't know was how long it was going to take to get to this point nor what he/we would have to endure along the way.

To say the last 7 months have been horrendous would be an understatement of great magnitude. If fact, 6 weeks into this new trach lifestyle I began questioning my decision to even allowing it.

The last 6 months Jophie has struggled with severe pain. He was coughing up blood on a regular basis. He was unable to sit up or to vocalize nor were we able to explain to him why. He's dealt with fear and frustration over that inability to vocalize. There has been lots of crying and gnashing of teeth. We both have had many sleepless nights and days as well as many trips to the ENT who was overseeing his progress as well as troubleshooting the problems. My battles with his insurance over yet more medical supplies related to this new trach continue as they still are limiting or refusing to cover needed/life sustaining items. The battles are never ending. Like I said we need a knight to slay these dragons who seem to come in many shapes and forms ;)

During the course of all this mess we were able to determine that Jophie was unable to wear the size or brand of trach that was originally placed. In fact it caused a huge ulcer and nearly bore a hole through his windpipe thus the cause of all the bleeding/pain/infections which led to a 2nd trip via ambulance due to his airway nearly closing off while Jophie's nurse and I watched helplessly. Ugh! A smaller pediatric trach was placed in the ER then he was admitted for surgery number 2 where the new pediatric trach would be evaluated as to whether or not to keep it and repair any damage sustained by the old trach as well as remove any granulation tissue that may have formed. To make matters worse, were having to boil/reuse these trachs which was causing the reoccurring infections not to mention warping the trachs which also caused more damage/injury and could have easily broken off in his airway.
Fast forward to now October 2008.

Jophie is a much happier little guy! After many trials and lots of tears, we've found the brand of trach Jophie can use. Of course its custom and pricier than the rest but, its working and I for one am NOT going to muck with it! Would you? :0) His anxiety/fear has lessened considerably if not completely during daily trach cleaning as well as his weekly trach changes. He's been able to sit up for short periods of time and often for a couple hours. We've really seen improvements just in the last 3 to 4 weeks and have actually been able to do some "fun" things with him for the first time in sooooo long! I can't tell you how healing that has been for not only Jophie but me as well. He's still swollen quite a bit from the massive steroids but we are successfully weaning trying ever so hard to get him back to his maintenance dose. If all goes well barring any complications he should be back to maintenance by the second week of December! Phew! It's been a long road on this wean starting way back in march but so far so good!

Daily we continue to juggle steroid dosages by increasing and decreasing based on illness, stress, infections etc...Infections and super bugs continue to plague him. He now sees a pediatric endocrinologist at Columbus Childrens Hospital for his failing/failed adrenals. 5 years ago I changed his formula to Novasource pulmonary which is geared towards children with breathing and respiratory problems. This formula has absolutely been miraculous unfortunately we've just found out they will no longer be making it so the hunt is on for something comparable. I've also incorporated 3 different types of yogurt including an immunity booster as well as crystal light immunity which we add daily to his water infusions. Our hope is these things will help his compromised immune system as well as the candida that plagues him off and on. He now weighs around 100 pounds and daily we are slowly seeing the sparkle return to his eyes. I know without a doubt the new things we are trying are helping but the real credit goes to our heavenly father who continues to keep Jophie wrapped in his loving/healing arms.

The years have indeed been hard on Jophie. He has endured more than most do in an adult life thats for certain. He's faced death on more occasions than I can count. He's battled the ventilator on more than one occasion and he's had his share of surgeries and surgical procedures. He also has endured and continues to endure more tests, painful and unpleasant procedures, braces and corrective equipment, treatments, surgeries, rare and deadly super bugs and faces many monsters beyond what any of our imaginations could fathom. Jophie accepts all these daily routines that help him to survive and yes....he does this with a SMILE!

As you can see Jophie is MY LIFE. He is in every single breath I breathe. I love him so much sometimes it hurts which only fuels me further to fight for what he needs. He is indeed a special little guy who continues to touch lives everywhere he goes. I've been witness to miracles beyond measure and watched Doctors and Nurses stand with mouths gaping open as they try to comprehend what has just occurred. Time and Time again he survives, proclaiming loudly for all who see...

There is a God, I am loved, and above all he is in control. I am not a mistake nor am I damaged goods. I'm perfectly made and worthy of saving.

A masterpiece.

If he does nothing else in this world except for changing hearts and making others see beyond his disabilities and really SEE HIM as the masterpiece that he is, THEN he's accomplished everything.

It's been a long, scary road. We continue to travel this road together. Jophie and I with Jesus holding our hands.

A hero is said to be someone who is distinguished by exceptional courage and strength.

My life has forever been changed by such a person.

He's my hero

He's my son.

A Day in our Life

While most people have long since settled for a good nights sleep, Jophie and I are just beginning our day bright and early at 1 a.m.

1 a.m.--Reposition Jophie/Change diaper and bed pad and/or sheets that are usually wet/Give Carafate/Sterlize water/Add Immunity booster to his water infusion/Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes/Albuterol Breathing Treatment

3 a.m.--Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Bendaryl/Zofran/Mix crushed meds with sterile water and leave to soak/Repostion Jophie/Change diaper and bed pad and/or sheets that are usually wet/Give meds via Mic-key and begin Tube feeding/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours

6 a.m.--Tube feeding is finished/Reposition Jophie/Change diaper and bed pad and/or sheets that are usually wet/Aluterol Breathing Treatment/Flovent/Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes

7 a.m.--Carafate

7 a.m. to 9 a.m./Try to catch a few Zzzzzs!

9 a.m.--Nurse arrives/Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Zofran/Prevacid/Mix crushed meds with sterile water and leave to soak/Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet/Give Albuterol and Intal Breathing treatment/Give Flovent/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours/I lie down to try and catch a couple more hours of sleep

12 p.m.--Reposition Jophie/Change diaper and bed pad and/or sheets that are usually wet

1 p.m.--Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes/Give Carafate

3 p.m.--Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Mix crushed meds with sterile water and leave to soak/Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet/Give Abuterol Breathing Treatment/Give meds via Mic-key and begin Tube feeding/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours/Eeek! I haven't eaten yet! Make a mad dash to grab some food!/Grab any meds at pharmacy/groceries/pay any bills that needs paying while I'm out and about

5 p.m. on Monday/Tuesday/Thursday Nurse leaves/3 p.m. on Wednesday/Friday Nurse leaves

6 p.m.--Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet

7 p.m.--Give Albuterol and Intal Breathing Treatment/Give Carafate/Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes

Try to snatch a few more Zzzzzs here!

9 p.m.--Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Mix crushed meds with sterile water and leave to soak/Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet/Give Abuterol Breathing Treatment/Give meds via Mic-key and begin Tube feeding/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours

1 a.m. and we begin all over again!

This breakdown of our schedule doesn't even include the many other things that have to be done daily with no set time. I've only included the necessary things that HAVE to be done and HAVE to be on a schedule.

Now for the "other" things that also need tending to but we have to just work in between everything else

1. Tubing changes on his Oxygen Concentrator/Nebulizer/Air Compressor and Tubing to his trach

2. Equipment check on all of his equipment to make sure everything is in working order

3. Answering any alarms from those machines

4. Suctioning

5. Range of Motion/Stretching

6. Bathing/Grooming

7. Cleaning Filters to all machines

8. Sterlizing water and/or any equipment supplies that need it

9. Laundry and just keeping up with his Bed pads/sheets/clothes that tend to be
soggy from just bout every body secretion you can imagine is a chore in itself and then theres mine!

10. Dishes

11. Sterlize/wash all his tubes/syringes/feeding bolus sets/Trach mask/Nebulizers masks/Trachs/bottles

12. Pooey Patrol! Every 3 days we have to give prophylatic medications to keep up with that little sluggish system of his! ;0)

13. Phone calls daily to Medical supply companies/Insurance

14. Restocking Medical Supplies/Putting Medical supplies away as they are delivered

15. Bills that have to be paid

14. Trips to the pharmacy for medications which seems to be neverending

16. The house and outside yard comes very last but still houses need cleaned and yards need mowing

Now try slipping in there an "outing" or something "fun" for Jophie besides all the medical stuff or how bout a doctors appointment or worse still he gets sick and then we have a whole nother set of meds and treatments!

Phew! Jophie sure is a busy kid and keeps his momma and nurses busy too! It definitely takes a team to care for him and meet all his needs on a daily basis. I'm very thankful for the nurses we have and wouldn't trade them for anything. In fact, they are more like family than "hired help". I like it that way especially for Jophie. Everything in his life is so "clinical/medical" and his home is one place I won't have that. He needs to feel comfortably in his home and know this is a fun/safe place to be! Now, if I could just find another nurse to fill these gaps we are having on the weekends I'd be one happy camper. We are still winging it alone every other Saturday and are limited 3 out of 4 of our Sundays. This weekend is one of those weekends and I for one can tell you....I am one tired momma! No regrets and no complaints from this corner though! I'd go to the ends of the earth to meet Jophies needs no matter how tired it makes me!

Meals 4 Wheels is a collaborative project inspired by Jophies need for transportation and medical supplies. Due to Jophies progressive illness, he is no longer able to ride in our current vehicle safely or comfortably. Our goal is not to get a new car, but to supply Jophie with a safe means of transportation. As medicaid continues to cut costs and pay for less of his medical supplies and equipment, Jophies needs have become greater. This is how the idea of the cookbook came about.

The actual cookbook was created from our success with weight loss. Since May of 2007, six of us collectively have lost a total of over 200 pounds. This was done exclusively by using the types of recipes in our cookbook, exercise, helpful tips as well as an overall lifestyle change. Through a lot of experimenting we were able to create healthful recipes without compromising what we all love most. The Taste! We believe that this cookbook can help you successfully lose weight and improve your own quality of life, just as by purchasing one you will help us to improve Jophie's quality of life.



Please support Trina and Jophie by leaving comments and checking out the cookbook site here.