Story of Allie

A pre-dawn phone call from my prodigal daughter wrenched me from sleep. “Dad!” she gasped. “You have to pray. Allie is in an ambulance. She’s not breathing.”

My wife Susan and I prayed. Then I called my close friend and begged him to wake his wife and pray too. I needed heaven to mobilize. We needed more prayer than I knew at the time. We didn’t know yet that horrible violence had been inflicted on our granddaughter. These acts against her mowed a wide swath of damage across every life that touched Allie’s.

Allie is my granddaughter, born to my daughter, Charity, when she was 19. In the summer of 2006, Charity brought Allie home to live with us. Allie brought new life and brightness into our house. Six months later, on an unusually cold day in January, our hearts were broken when Charity decided to leave our South Florida home to live in gray San Francisco with Paul, Allie’s biological father. They wanted to be a family.

Allie’s second call came an hour later. “Dad, Paul shook her. He shook her and squeezed her and she stopped breathing,” my daughter said. My knees buckled, but I couldn’t find a chair.

Charity had been at a girlfriend’s house after a late-night shift, and Paul had been home with Allie. That was the arrangement. One parent worked and the other watched Allie. Alternating shifts relieved them from the added financial strain of employing a babysitter. They lived in a fifth floor studio apartment in San Francisco's gritty Tenderloin District. The building was old and poorly maintained. The elevator was often inoperable, requiring tenants to hike up the stairs with armloads of groceries and babies.

When the paramedics arrived at Paul and Charity’s apartment, Allie’s vitals were crashing. She wasn’t breathing, and her pulse raced as her weakening heart attempted to pump precious oxygen to her organs. A paramedic tested Allie’s capillary refill. He pressed the flesh on her arm with his thumb and counted how long it took for his thumb print in her flesh to disappear. For a healthy person, it’s immediate. On Allie’s skin, the print lasted several seconds.

As the paramedics squeezed air into Allie’s lungs with a bag valve mask, the elevator door disengaged from the lock, leaving its occupants stranded between floors. The paramedics manhandled the door open and climbed out onto the level above with Allie and their equipment, scrambled down the stairs, and sped to California Pacific Medical Center. Nurses and doctors worked to stabilize her. Tubes were inserted into her throat and a machine inflated her lungs with oxygen. Ten-month-old Allie remained in a coma.

She was admitted with a broken collar bone, a broken rib, and a broken fibula. Each injury was in a different stage of healing, indicating several traumatic insults spread out over time. When questioned by the emergency room doctor, Paul calmly confessed to physically abusing Allie for over four months. He showed little emotion as he told the doctor. “He seemed relieved,” the ER doctor later told me. His confession elicited a strange peace in him.

I was in a daze the day after the phone call. It was Sunday so I went to church. As a pastor, it made sense to be with my church family as the crisis unfolded. The earliest flight I could get was on Monday. Time stood still. There’s a famous scene in the movie “Good Morning Vietnam” juxtaposing Louis Armstrong’s “What a Wonderful World” with scenes of explosions and people being mowed down by machine gun fire. This is how the first day was. It felt like somebody else’s tragedy was unfolding while I looked on.

I arrived in San Francisco on Monday. As my cell phone picked up the local signal, I noticed I had voice mail. It was from Jim, Paul’s father; Allie’s paternal grandfather. “Bryon, please call me when you get this,” the recording said. He answered my call and was frantic. “I can’t believe he did this! I hope he rots in jail!”

Those were my sentiments, too, but strangely, instinctively maybe, I told him, “Jim, if there’s anything Paul needs right now, it’s his dad. You need to be the best father to him you can be.” Out of nowhere, the pastor in me showed up. I was startled, quite frankly. I discovered early that I couldn’t hate Paul even if I wanted to, which was strange because many of my friends did not restrain their expressions of rage toward him. I wanted to keep an open door to his family. I didn’t want to blame them for the actions of their son. I couldn’t hate Paul because I didn’t want his family to become the accidental targets of my anger. My impression of Paul when I first met him after Allie was born was that of a bewildered kid in a big, frightening world. I felt sorry for him. After this happened to Allie, shock was added to deeper, inconsolable sorrow.

Another inmate beat Paul so badly his first night in jail; he had to have his jaw wired shut. He ate his meals through a straw. This news sickened me. Maybe if I was looking at this as an onlooker rather than a participant, I would call this justice. But I didn’t feel avenged, and I didn’t want the attacker as an ally. This perpetuated chaos. I felt neither vengeance nor vindication—only nausea. It didn't bring Allie out of her coma.

I made my way to the pediatric intensive care unit at California Pacific Medical Center in San Francisco. A polite, serious nurse escorted me into Allie’s room. Allie’s head was completely wrapped in a bandage, turban-like. She lay under the glow of a heat lamp that maintained her body temperature. Tubes from machines for breathing, eating, and delivering fluids and medicines snaked from machines into her mouth, nose, and veins. I wasn’t met with excited giggling as I had been in the past. There was only the sad whir and beeping and pumping sounds of machines keeping her alive. I leaned in and kissed her, but she didn’t know.

San Francisco’s director of child protective services called Charity and me to a meeting. She was hard on Charity. “You should have known something was hurting your daughter,” she said, her words heavy with rebuke and warning. Charity told her she wanted to give custody of Allie to my wife and me. The director of child protective services looked me in the eye and told me there was no way I should expect to simply take custody of Allie. The director doubted my wife, Susan, and I were qualified to care for Allie medically if she ever left from the hospital.

In the same week, while Allie was still in a coma, doctors and I began to have conversations about removing the artificial breathing apparatus Allie depended on. Allie’s ability to breathe on her own needed to be tested. If she could not breathe long term without the equipment, we would have to have another conversation.

I pled with God to heal her, but doubt and despair towered over faith. If God had been unavailable to keep her safe, why would he be available to heal? I used faith-filled words in my prayers, but neither my faith nor my words had value.

In the first week I was pummeled by information, decisions, and weighty conversations. The only improvement observed in the first week was her ability to maintain her body temperature without the heating lamp. This was not enough improvement for me. Anguish paralyzed me.

Somehow people from a local San Francisco church, Calvary Chapel San Francisco, heard about my situation. They visited me regularly in the hospital and brought me food and prayed with me and were quiet with me. My relationship with God was thin, but he made his presence known through the small band of new friends.

I did my best to be upbeat in my communication with our church family back home. I recruited people to pray for us. Perhaps God wasn’t hearing my prayers, but he definitely would work, I concluded, through the prayers of others.

At the end of the first week, doctors removed tubes from Allie’s throat. She began to breathe on her own, but she remained in a coma. Her first few breaths were labored, and throughout the first day and night breathing was hard work.

Susan arrived in San Francisco in the middle of the second week, and Allie started to respond and began to emerge from the coma. It was gradual, not like it happens in movies. Allie didn’t just wake up a little confused after too many days of sleeping. Only one eye fully opened the first day. The other slowly followed over the next few days. It was evident that she was in terrible pain.

Susan’s prayer life also suffered. Whenever she prayed for relief for Allie, it seemed Allie’s pain and discomfort would immediately increase. Prayer seemed to have contrary effects; it made things worse. Susan quit praying in the early days of our ordeal. Our entire belief system was flipped upside-down. My wife and I have watched God answer prayer in our lives and the lives of our friends because we followed him; we obeyed him and lived for him. Weren’t those the things that guaranteed that God would bless our lives? Not only was I confused, I was discouraged. Thinking about it now brings to mind the story of Abraham and Isaac. Abraham watched God deliver what only God could: a son to a childless couple whose child-bearing years had come and gone decades ago. Abraham loved Isaac with all of his heart, and one day God required Abraham to sacrifice his son, Isaac. The Bible doesn’t give us the details, but I believe Abraham’s belief system was flipped upside-down, too. “What about your promises God?” Abraham must have cried in anguish. “Haven’t I followed you all these years?”

I was learning that God was doing something much deeper in our lives than we ever expected. God gave Isaac back to Abraham. This happened near the end of Abraham’s very full life, but it was only the beginning of God’s plan to redeem men’s lives. So, too, we were in the very early stages of the work God was doing in and through us to include us in the same plan; redeeming lives. The work he was doing would only be visibly evident from a not yet developed perspective. Why God would let all this happen to us we couldn’t explain. This is the point where we began to learn to trust God in day-by-day increments.

We lived in the hospital for eight weeks with Allie until the day she was released. Susan learned how to care for Allie while we were there. She relieved the nurses from including Allie in their regular rounds. Meanwhile, the doctors in the pediatric unit became our biggest advocates in the bid to gain custody of Allie. Our case was turned over to a new social worker who was not antagonistic. In fact, Jack became our greatest ally and champion of our cause. In a stunning reversal, Allie's court appointed lawyer followed suit and began to make the case that awarding us custody was the best course of action for Allie.

On the same day Allie was released from the hospital, the courts awarded us custody of Allie. Becoming Allie’s foster parents came with two restrictions: we were not permitted to leave California, and Charity was only allowed supervised visits. She could not live in the same house with Allie. We decided to live with my sister in northern California, a six-hour drive north. We had to say goodbye to our house in Florida, my job as a pastor, and our 18-year-old son, Aaron, living in Florida.

That was the beginning of the hardest time in our lives. We didn't have the hospital to back us up. We didn't have doctors and nurses as ready resources. We didn't have a hospital keeping house and preparing our meals and getting medicine doses ready. We were totally on our own.

My wife and I went to war with each other over private moments of peace. Our days and nights were filled with battle, each claiming that the other wasn't doing his or her share. I was a selfless martyr and she was a slacker. We tore into each other like wounded animals. I wanted to leave.

“If you’re leaving, don’t wait,” Susan said. “If you’re going to do it, do it now so I can get on with figuring out how life is going to work.”

This wasn’t living. It wasn’t even surviving. I made a decision to serve my wife and Allie no matter what the cost. This was the only clear option. I couldn’t get Romans 12 out of my head. I needed to become a living sacrifice. The only way our little family unit would weather this was to serve selflessly, expecting nothing in return. This isn't personal piety and this isn’t an attempt at superior spirituality. It was the only rational thing I could do to survive. This is what God was waiting for me to discover. Being a living sacrifice isn’t just a mystical way of doing Christianity. It’s not a life of simply reading the Bible, memorizing a few verses, singing songs, going to church, and obeying a few rules. The way Christianity works was summed up best by Jesus when he said, “…whoever would save his life will lose it, but whoever loses his life for my sake will find it (Matthew 16:25 ESV).”

In his book, The Pursuit of God, A.W. Tozer wrote:

There can be no doubt that this possessive clinging to things is one of the most harmful habits in the life. Because it is so natural it is rarely recognized for the evil that it is; but its outworkings are tragic. We are often hindered from giving up our treasures to the Lord out of fear for their safety; this is especially true when those treasures are loved relatives and friends. But we need have no such fears. Our Lord came not to destroy but to save. Everything is safe which we commit to Him, and nothing is really safe which is not so committed.

This was the biggest step of faith I had ever taken because there were no guarantees and no way to survive a failure.

Meanwhile, Charity was despondent after losing custody of Allie. Twice I talked her out of suicide. She went days without sleep. She became unemployable. She ended up homeless, a 99-pound 20-year-old living on the streets of San Francisco and Berkeley. She spent her nights up off the ground and out of sight in trees and on scaffolding of multi-story building projects. After about three months of living like this, she made friends at a local Alcoholics Anonymous chapter. They opened up their homes, allowing her to sleep here a few nights and there for a few more, giving her much-needed rest and security. Soon she was able to find work as a short order cook and rent a room.

My son, Aaron, involuntary discovered solitude. Everyone that was ever close to him has moved a continent away. Aaron was in school when everything happened. He wanted to come out to California, to do something, but I told him to stay put. There was nothing he could do. Allie was in a coma. Charity was in shock. Thinking back, it would have been nice to have the family back together even in this crisis. But having the family truly back together was not going to take a trip across the country, it was going to take a trip back in time.

Susan felt utterly abandoned. At first, there was an overwhelming response to our situation. Friends and family flew out from Florida to help Susan when work took me out of town. Over time, our needs changed little, but people got on with their lives. Friends promised to help and provide relief, but they took one look at how much work Allie is and slowly faded from view.

Now, three years later, Susan and I are back in Florida and have officially adopted Allie. Susan and I stick together like we never have before. We live near close friends that encourage us and help when they can. It has been healing for us. “Why me?” I complained to Joyce, a motherly lady in my life.

“Why not you?” she shot back. “You did a great job raising your first two kids, you’re visible in the community as a pastor, and you have a strong marriage. Why wouldn’t God give this child to you? Who else would he give her to?”

Those simple words pierced my heart and peace washed over me. She spoke like an oracle, completely shifting my perspective. At first, I couldn’t get my mind off of what had happened to this little girl, to us, and to me. My faith was strengthened as I shifted focus from our situation and to the Creator God who delights himself by including us in his plans to the great amazement of all who take notice. Once we felt abandoned by God, but now we sense his presence and see his wisdom. We couldn’t do this without each other and we couldn't do it without the preparation of our hearts over our lifetimes. My life is full now as hard as it is to take care of a special-needs child. Yet this child is the source and the recipient of all my love at the same time.

Allie’s medical challenges will be continuous. She has cerebral palsy and is a quadriplegic due to brain damage sustained from shaking and oxygen deprivation. Her little body grows incorrectly, requiring surgery to prevent painful deformed development. Bones and muscle grow at different rates causing joints to migrate out of socket. She eats only puréed foods preventing teeth from strong development. Brain damage has severely limited her vision. Doctors say that she will never walk or talk or play like a normal child.

Susan is the biggest trooper. She’s embraced the task and held on with a relentless, unyielding grip. It’s more than motherly instinct. It’s mission. Of all of us, she has most deeply recognized that God picked us for this task. That being selected by God for this mission at this time in our lives is the best thing for us. That God has shown himself to be wise to wait until this precise time in our lives to do this thing. She loves being a mom again even if it’s the hardest thing that has ever happened. I always hear her say to Allie, “I love being your mommy."

I don't think about Paul, Allie’s biological father, much. When I do, I try to pray for him. I see his mother often, but I don't think of her son at all except when Allie is having an unusually bad day. On those days my mind runs a feedback loop of blame. But I find myself allowing this pattern to run a much shorter course lately. I'm quicker to pray. I ask God to cause Allie's little life to somehow impact Paul's redemption.

We want Allie to grow up to be a hero whose life blesses victims and perpetrators alike. Nobody is vindicated or avenged. The Cross enthroned a dying savior who said, “Father, forgive them, for they don’t know what they are doing.” Nor did they know what was coming: resurrection and new life. Death is the end of the road for offenders, but not for the forgiven. We want Allie to have such an understanding of the gospel that her repaired life is a signpost pointing to the redeemer who vindicates, justifies, and pours grace upon accusers, victims, and executioners alike.

This is how we lay low on the busiest travel day of the year…

I don’t know what to say here except that it was a pile o’ fun having the Charming and Beautiful Susan snap this picture of Allie and me on my bike.

Nothing like being barefoot and in shorts the day before Thanksgiving. As you can see, we’re having a rough winter here in Fort Lauderdale.

One of my favorite people: Yolanda

Yolanda is an amazing lady. Allie's paternal grandmother is the grandmother I always wanted. She has helped us with Allie from day one. Allie is so blessed to have a grandma that is so hands on.

Life isn't fair but Yolanda doesn't complain. She makes it a point to be a blessing to those around her proving that the best way to overcome adversity is to put others before yourself. She has done that with Allie and Susan and me demonstrating goodness that must be mentioned.

Allie’s New Schedule

It’s unbelievable how happy Allie is these days. We’ve enrolled her in school at Broward Children’s Center and she loves it.

LOVES it.

She’s absolutely a new kid. Her experience at this new school is ten times better than the school she attended last year. Allie can’t wait to get to school in the morning and when we pick her up late in the afternoon, she is still having fun with her teachers and classmates.

For a couple of days, the Charming and Beautiful Susan went with her sister to go visit their parents. The pictures I’ve included in this post are proof that I can get Allie ready for school on time, get her lunch and junk together, and dress her in cute little outfits all by myself.

Broward Children's Center

When the Charming and Beautiful Susan and I first walked into the Broward Children's Center, we were terribly disoriented. We were checking the place out as a possibility for Allie to go to school, but I think our default mindset is that no one will measure up; our child is too hard to deal with. It's really not them; it's us.

But the tour of the place and especially the interviews with the principal, the nurse, and Allie's, teacher put us at ease. They asked all the right questions, had all the right training, and obviously had the confidence that accompanies experience. Plus, right away, Allie was comfortable.

Allie's in her second week at Broward Children's Center. The first day was the only day she complained. So far, ever other day has been better than the day before. Allie's teacher is sweet and obviously loves her job and the kids in her class. She sets the kids up in little groups so that each child never feels alone. Allie always has something fun or interesting to do and little friends to do it with.

We're looking forward to the coming year. And we're thankful for the time school frees up for Susan and I.

A Day in Her Life

I was asked to put together a video of a typical day for Allie for an upcoming court case. It’s about ten minutes long, but if you’re interested, it’ll give a handle on how things run around here.

Integrated Webcam Video of Allie

Actually, the video is mostly of her pop-pop. He’s not as pleasant to look at, but he’s new at using the integrated dell webcam.

Moving

Moving is at the top of the list of things I hate to do. In the past three and a half years, we've moved three times. Two of those have been cross-country moves. As regular readers of this blog know, the first move was forced on us. Our granddaughter Allie was shaken and abused and nearly killed. This incident left her in a coma for 10 days and hospitalized in San Francisco for eight weeks. Allie is severely handicapped as a result.The Charming and Beautiful Susan and I decided  to adopt this precious little one and since this occurred in California, we had to move there. We left family, friends, jobs and home, to make this happen.

After a year and a half, the adoption was finalized and we packed up and moved home to South Florida. But specialists and facilities that accommodate Allie, along with a good part of my work, are all located about fifty miles south of our West Palm Beach home down in Broward County. So we've rented a town house in Deerfield Beach, closer to where life has taken us.

We have incredible friends that have stuck with us through all of this. We are grateful for you all. You support my ministry to missionaries, you've helped us with Allie, you've ministered to our needs where ever we've lived, and you've helped us load and unload three moving trucks. We've had more deep friendships develop in this past three years than most people have in a lifetime. Like beauty for ashes, unbelievable blessing has come out of our devastating tragedy. Thank you for your friendship and prayers. Christ has made Himself visible through your love and acts of compassion toward my family.

Allie Prone

This is the stander Allie was given yesterday by Children’s Therapies, Inc. in Jupiter.

How we swing

Since Allie’s recent surgery, we’ve had to switch to a new swinging strategy. The Charming and Beautiful Susan shot these short videos today at the park.

Here’s another quick shot from another angle…

June Allie Update

Allie had two operations this month. The first one was oral. She had four teeth pulled and and all of her molars ground down and crowned in silver. She also had a follow up operation from last years hip operation leaving her in a swash brace.

Good Morning

We play this video every on my iPhone when Allie wakes up.

Recovery

I expected to have a dreadful weekend.

This past Tuesday Allie had a follow up operation on her hips. Last year she had corrective surgery on her hips that involved breaking and repositioning her right and left femurs. Hardware was installed to reinforce the new position of her bones. This week, that hardware was removed.

Allie also had her muscles lengthened as part of the hip surgery last year. Her adductors, hamstrings, and Achilles were all lengthened which involves slicing the muscles and then setting the legs in a cast in a position where the muscles would heal stretched. It's pretty radical surgery. Allie was in a cast shaped like an "A" frame for six weeks. She incurred two serious infections. Her scheduled 3 day hospital stay stretched into 8 days. And she was in more pain when the cast was cut off than she was in six weeks of wearing it. It was a brutal three month ordeal.

So we looked forward to this week with dread for quite some time. Allie's adductors (the muscles used to open her legs) once again needed to be lengthened. Once again Allie has incisions in her hips and groin. And today is her fourth birthday. We didn't schedule any festivities because we didn't think she'd be ready for it.

But we were wrong. Allie is recovering amazingly well. She is a phenomenal little kid. She has stitches where she was sliced and had screws and clamps removed. But if you were to ask her, she'd tell you it was no big deal. Three weeks ago she had outpatient oral surgery that was much more traumatic for her.

We should have scheduled a birthday party. But hospital stays always bring such a cloud of gloom into our lives that we never consider hopeful possibilities. Thankfully, Allie doesn't think that way. She's inclined to be happy regardless. I get so caught up in feeling sorry for her (and for me) that I forget to expect God to do the unexpected. But maybe Allie remembers and maybe I need to learn a lesson from her.

- Posted from my iPhone with BlogPress

Use it or lose it

This is the last picture of Allie with teeth. We spent the day at the hospital today while Allie had oral surgery. A few weeks ago we took Allie in to see the dentist. Her teeth were getting bad despite regular brushing and very, very few sweets. Or so we thought. We shared a Starbucks brownie with Allie once every two months. That's it. But she takes medicines several times daily mixed in sweet syrup. We were also giving her rice milk.

It turns out that the real culprit is her diet of puried foods. Due to brain damage sustained from shaken baby syndrome, she does not have the motor capability to chew food. The result is soft, weak and decaying teeth.

The dentist we visited a couple of weeks ago examined and cleaned her teeth. Allie needed a ton of work done. But he said that her teeth were not as bad as he expected.

Since Allie has cerebral palsey, it's not practical to do the work the conventional way a section at a time. It's better to do all the work at once. For that, we were referred to a dentist that operates on kids while under anesthesia. He gets all the work done at once in under an hour while the kid is knocked out. Today was the day Allie had the work done.

Since our examining dentist said her teeth weren't as bad as he expected, you can imagine our shock when the nurse came out of the operating room to inform us that four of Allie's top front teeth had to be pulled and eight of her teeth had to he crowned. That leaves her with a tiny row of six of her own teeth in the front on the bottom and two canines on the top. The back of her mouth is filled with silver. The front top is all gums until her permanent teeth come in.

It was heartbreaking to see her when they allowed me back into the recovery room. Her mouth and nose were bloody and she was wailing. But she stopped almost instantly when I scooped her up and held her closely to my chest.

God designed our bodies wonderfully. In our mothers' wombs he knit us together the psalmist David wrote. Using what God gives us makes us stronger, fit and correctly formed. When what we have is not used or is rendered nonfunctional, we are in danger of losing it. This is something we learned a year ago when Allie had to have hip surgery. Hip sockets are formed while the child learns to waddle then walk then run. If legs are not used, their growth is stunted; deformed.

Use it or lose it. That used to be cliche. Now it's sad reality.

Or is God using this to strengthen other things in us; areas of our minds and bodies that would be neglected if life were "normal" or easy. I can see areas of Allie's life being strong where the same areas in my life are neglected and atrophied.

Use it or lose it.


- Posted from my iPhone with BlogPress

New Allie Videos

Since I got the iPhone, I haven’t been carrying around my little digital video camera around. But I need to. I love getting video of Allie and keeping friends and family updated.

In this vid, Allie is excited by the vacuum cleaner. It used to terrify her and I had to take her out for a walk so the Charming and Beautiful Susan could clean our domicile.

In the next video, Oliver thinks he has to protect Allie from something ten times bigger but a tenth as annoying.

Allie’s MRI Results

Last week Allie had an MRI and an EEG done. That was a pretty big deal. We've been trying to have these done for over six months. But Allie was always sick every time her appointment rolled around. One time we made the hour drive down to Hollywood only to be turned away by the MRI tech because she had reservations about the medicine Allie was given that morning. The nurse was okay with it, the doctor thought the tech was a little paranoid, but for some reason the tech got her way and we were sent home. Allie's appointment was postponed for six weeks.

Six more weeks went by but we had to cancel because Allie was sick again. We're told that happens often in your child's first year of school. Especially in a snotty, unsanitary environment and your child always has her hands in her mouth. Now she has a chronic ear infection and more appointments scheduled. Now she's too busy with doctors' visits with four different specialists to go to school. Finally she's healthy long enough to get the work done the neurologist orders so he can tell us how bad or good her brain damage is.

The last time she had an MRI and EEG was three years ago when she was in a coma. We were told then that our baby had moderate to severe brain damage.

Today we were told that the EEG showed that areas of her brain were emitting weak electrical signals.

It's weird to me that electricity flows through your brain and my brain.

But in Allie's brain the signals are weak because there are areas where her brain is damaged and the live healthy part of her brain where electricity is flowing is under a layer of damaged area that used to be healthy brain matter. That area of the brain emits weaker signals for the EEG. That is consistent with the picture the MRI, a kind of a full body x-ray, paints.

Her brain development, the doctor tells us, has plateaued. The vocabulary Allie has at almost four years old might not grow beyond the few words she currently employs.

Allie's favorite word is "good". She really knows how to use that word. She tells us when her food is "good" with every bite. She says "good" when she's happy or in a good mood which is often even when she's sick. When Mickey Mouse Club House or Handy Manny or the Imagination Movers comes on she says "good" indicating that this is children's programming she enjoys.

Allie says "hi" when she's happy to see me. She likes "hi" so much that she gives that word two syllables. "Hah-hi".

She also says "Oliver" which is our dog's name. He's not really a dog, though, because he's part Chihuahua. "Oliver" sounds like a complex word for someone with such a small vocabulary, I know. Allie being the creative thinker and problem solver that she is says this word with her fingers in her mouth. Well for part of the word. The first two syllables she has fingers in her mouth. "Ol-la". The last syllable she slides her fingers out of her mouth while pulling down on her lip: "vah".

The doctor says she has plateaued and that she should learn alternative ways of communication but I think Allie is already a step or two ahead of him.

"Ol-la vah".

The Dentist

Yesterday was a first. It was Allie’s first trip to the dentist. Dr. Mark Mays in Palm Beach Gardens is amazing. Giant butterflies and dragonflies decorate the walls. Free video games keep kids occupied in the waiting room. He’s really thought through making a good first impression. The second impression is where I got hung up. But there’s just no easy way to tell someone that their kid is going to have to be restrained to a papoose board (pictured left). The nurse brought us into the room and there it was being carefully guarded by giant, reassuring butterflies and dragonflies.

“I was wondering how you were going to do this,” I told Dr. Mays. He appeared in a Polo shirt with perfect hair and a pleasant smile. I instantly trusted him. But Allie had her reservations. His entrance was the Charming and Beautiful Susan’s cue to leave the scene as if her chair instantly burst into flames. She’s not so much help in a medical environment when her little one is the unwilling patient.

Dr. Mays was an artist even when working on a freaked out, special needs little kid. He gently, masterfully, and thoroughly cleaned and examined Allie’s teeth in under fifteen minutes tops.

When we got Allie three years ago, she was under nourished. And we weren’t able to brush her teeth for a year. We just couldn’t get her to open her mouth. The doctor let us know that this was normal and that he really expected her teeth to be much worse than they are. But she definitely needs to have some dental work done.

Typically, dental work is done in stages through multiple visits. But because of Allie’s condition, her work will have to be done in one sedated trip to the hospital. She has to have a follow up operation from last year’s hip surgery, so we may piggy-back the dental work on the surgery since she’s all ready sedated.

When I think about it, I wanna be sedated.

My Baby Girl

Well it's been a tough couple of weeks for my baby girl. She has been sick so much lately.
We found out that Allie has some really bad ear infections which has been the reason for her being sick so often.
The antibiotics have not been working so they haven't been healing like we thought.
So this week she has had to go to the doctors to get a shot three days in a row. My poor baby.
She's such a trooper. She hasn't cried to complain which really surprised the doctor. He said most kids with ear infections this bad would be crying.
All I can say is that this kid is a strong kid. I'm so proud to be her mommy!

To de-crankify

Around our house, as Allie goes,


the whole house goes. If she's happy, everybody's happy. If she's unhappy, well, you know the rest.

Hey. I don't need a lecture about fatherhood and leadership. Are you trying to tell me things are different at your house? What? You don't have kids? That's what I thought.

Well, around the Mondok house when Allie's "in crisis", we drop everything and have some father/daughter time at the swing set.

That always does the trick.


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The Artist Known as Allie

An artist comes in once a month to Allie's school to put together fun projects for the kids. The kids are photographed with a popular motif the artist is known for and dressed up as the artist. This is Vincent van Gough.

The Charming and Beautiful Susan steals the scene from Allie in this picture featuring Georgia O'Keeffe.

Van Gough again.

Draped in red.

The Charming and Beautiful Susan and Allie in O'Keefe motif. Hey, that rhymes.

Allie update from the ophthalmologist

Here Allie is pictured with therapist Pam playing an educational game on the computer. In front of Allie is a big red button connected to the computer via a USB hub. If you look closely at the screen you'll see the edges of a jack-in-the-box. Allie pushes the button which plays a tune busting Jack out of solitary confinement.

Allie is legally blind. She mostly depends on sound and touch to get the job done in these little computer labs. But don't despair. Allie has come a long way. Through the power of prayer, the incredible design of our Wonderful Creator, and maybe even a miraculous touch, Allie is doing better now than at the beginning of our journey.

Allie's first eye doctor report after she emerged from her coma was dismal. The diagnosis was atrophied (gray) optic nerves and cortical visual impairment (CVI). Check out what one Medline Plus has to say about Optic Nerve Atrophy:

Treatment

Once it has occurred, damage from optic nerve atrophy cannot be reversed. The underlying disease must be found and treated, if possible, to prevent further loss.

Outlook (Prognosis)

Vision lost to optic nerve atrophy cannot be recovered. If the cause can be identified and controlled, further visual loss progressing to blindness may be prevented.

"Optic nerve atrophy cannot be reversed." That news sucked the soul out of me when I heard it. The CVI diagnosis was a little easier to live with because that was the result of brain damage. The brain adapts more easily in small children. With early intervention and therapy there is hope; the sky is the limit. But once the optic nerve is damaged, that's it. It's like losing a finger; you don't grow new fingers. Limits hover closer to the ground with optic atrophy.

One year later, the same doctor examined Allie and said, "Her optic nerve appears pink and healthy... that's good."

I jumped out of my chair and said, "Last year you diagnosed her with optic atrophy! What are you saying."

"I guess I made a mistake."

Or is there another answer to my question?

That was about a year and a half ago. She still has CVI, but, like I said, that improves. Last week Allie had another eye exam. Everyone that works with her wonders just how much she sees. The doctor determined that she definitely has vision. The diagnosis has been slightly upgraded to delayed visual attention exotropia. (Sorry. I wasn't able to find easy access to articles at my reading level to link for you. You can google the italicized word if you like and read some pieces posted in medical journals.) I know, a diagnosis that has to pull from a Latin vocabulary to have a name can't be good. But it's actually improvement. The work Allie is putting in at school is paying off. So are your prayers. Keep up the good work.

First Number Two

Yesterday was a big day at school indeed. If you've been reading this blog for anytime you know that I've described for you the process of Allie's school potty training for her and class mates. It's quite a production. On either side of a hallway there are bathrooms, one for boys and one for girls. The bathrooms themselves are like narrow hallways with a row of toilets up against one side of the room.

Each morning when the kids arrive, they each take a turn taking a seat on the potty whether they need it or not. Most mornings, Allie doesn't need it. In fact, it took quite awhile for her to get with the program. When the report came the first time she peed on the potty, the Charming and Beautiful Susan and I were ecstatic. She's gone number one several times since. But yesterday we had the pleasure of reliving our excitement over bathroom accomplishments; she pooped on the potty.

I know, these are not the kind of headlines that get above the fold attention, but at our house, this is the kind of feat that gets statues erected. For us, it's like bringing home straight "A's". We run a victory lap. We throw a ticker tape parade. We forget lent party.

Kings Kids

The charming and beautiful Susan and I did something for the first time this weekend that we haven't done in years. We sat in church together. Since we've had Allie, her severe disabilities and care that accompanies have kept us from attending worship services together. Our service at church has not been non-existent. It occurs individually. We've had to be creative and very understanding of each other. Until very recently going to church has been pretty close to impossible.

It's been about three weeks since we learned that Calvary Chapel Fort Lauderdale has a ministry that serves kids with disabilities. We met with Pastor Joel Shonnenberg and were given an orientation of the ministry. We've become high maintenance parents now that we have a handicapped child, but Joel with expert pastoral finesse put us at ease.

The real test came three weeks later when we actually brought Allie to church. Between illnesses and prior commitments (and various other reasons for putting off starting a challenging beneficial, new habit), yesterday we finally took the plunge and drove down to Fort Lauderdale to attend worship service.

Pastor Joel, his wife Maria, team of volunteers stayed one step ahead of us as they prepped the classroom and took Allie off our hands. They prepared Allie's environment for maximum ministry and comfort. They reported that Allie cried for a few minutes put they were able to calm her which is a huge accomplishment since once Allie gets wound up, it's incredibly difficult to bring her back down. But obviously Allie trusted them and sensed their love for her.

We went upstairs to collect Allie as the service concluded. She was happy and we were super relieved. This definitely the beginning of a new chapter in our lives.

Morning fun

This is how we do mornings at our house. We bounce on a fitness orb. Feed Allie solid or liquid foods along with some medications, and hide one of her socks.

Here’s Allie, beautiful as she is, rejecting some of her liquid nourishment.

Like every other female, Allie loves to have her back scratched.

They are having way too much fun this early in the morning. Note the darkness outside over the Charming and Beautiful Susan’s shoulder.

Still having way too much fun. Can you do that?

Her.meneutics

Christine Scheller interviewed us a couple of month’s ago for one of Christianity Today’s online publications Her.meneutics.

It was a tough interview for us because we had to re-hash and re-visit emotions we forgot we had. Reading the article doesn’t help, but Christine is a phenomenal writer and tells the story well.

The name of the article is Saving the Life of a Shaken Baby. Christine interviewed the Charming and Beautiful Susan, me, Aaron, and Charity.

Her.meneutics

Allie Outings

Allie and I have been going for a Saturday morning walk now that my Disney Marathon training is over. The above picture is a view of our building as we walk east over the Blue Heron bridge. Count up two balconies all the way to the left corner (your left) behind the palm trees and that's our apartment there on the third floor.

Under the Blue Heron Bridge is this playground at Phil Foster Park. On Saturdays while Allie swings, a crew of Jehovah's Witnesses muster for an all out assault on people relaxing and spending family time.

This is Allie's class strolling through the animal exhibits at the South Florida Fair. We got to wander around the fairgrounds for a couple of hours Thursday morning before the fair opened.

Allie and a wabbit.

Allie and a wooster.

At the South Florida Fair

This is Allie and I at the South Florida fair with her class.


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