Allie's Blog

Allie's First Report Card

2011-11-17T14:22:00.000-08:00

We didn't know that when Allie would be getting one of these when she started at Bright Horizons.

While riding with Allie

2011-09-13T19:39:00.001-07:00

Here are some photos I snapped of Allie over the weekend.

She's the happiest kid in the world.

Aaron's latest work of art

2011-09-06T16:02:00.001-07:00

New School

2011-08-25T19:43:00.001-07:00

Allie started kindergarten this week. KINDERGARTEN! She loves it.

Last week, the Charming and Beautiful Susan and I went for a visit at Allie's new school, Bright Horizons, to meet Allie's new teacher and check things out. The first thing Allie's teacher told us was that a new chair and a new walker arrived for Allie. We were floored. We have been trying to get Allie a walker for TWO YEARS! We show up one day at school and not only is there a walker, but also a new specially made chair for Allie to sit in while she learns new things.

Allie will be able to go to this school until she's an adult. It's weird to think about a thing like that with your five year old. Especially one with Allie's unique challenges. But knowing that kind of stability exists in our situation is good.

A whole new world has opened up to us. The kids at this school melt my heart.

Overdue post and pictures

2011-07-20T18:35:00.000-07:00

Indeed. It has been awhile since I've written or posted pictures here on the World Famous Allie's Blog. All I can say about Allie is that she is doing amazingly well. She loves school and being with her friends and laughing out loud and giving kisses. Everybody raves about how beautiful she is. Her health has been good.

This birthday cake had a life expectancy of about five minutes once it arrived to Allie's birthday party. Diets were ignored and forgotten. Chocolate cake is one of humanity's greatest inventions. I personally ate 75% of it.

It was cool having Grandma Yolanda at the birthday party. Allie shrieked with excitement when she walked in.

The Charming and Beautiful Susan and young Charity look more like sisters than mother and daughter.

Twin centers of my universe.

These are Allie's buddies at church. This is one of Allie's favorite places on the planet. The workers in King's Kids love on and minister the love of Jesus to these kids. They also give parents of special needs kids the opportunity to enjoy worship together. They're life savers.

This is Allie's new ride. She just got this new wheel chair this week. It's a beautiful apparatus. Allie is quite comfortable in it.

I hope this brought you all up to speed. I'd love to hear from you in a comment. Even though things have gotten so much easier for us, we still covet your prayers for our family.

Allie Video Montage

2011-06-09T18:03:00.001-07:00

Some of Charity's friends (our new friends) made this video of Allie. If you know our story at all, you'll find this video moving.

Allie and me at the pool

2011-04-23T07:51:00.001-07:00

Summer's here. At least here in Florida where summer lasts 300 days, spring 60 days, and winter 5. So the pool is where we go to play on afternoons after Allie's weekend naps. She wakes up kind of cranky after a nap and the pool is the perfect pick-me-up. It does for her what a chocolate brownie frappuccino does for me.

We're in our first year in the community where we live now. So we're making new friends at the pool. Allie's physical challenges invoke inquiries from fellow pool users. The age of the person with questions is inversely related to the volume with which questions are asked. Five year olds ask questions with the volume cranked at "10", and 35 year olds ask their questions with a polite nod and a smile, volume turned down to zero.

We're very much in tune with the discomfort of parents as their kids interact with us. At least I think we are. And we do everything we can to keep parents from being embarrassed by their kids' curiosity. We try to engage both child and parent; I'll talk to the kid while the Charming and Beautiful Susan befriends with the mom.

One time a mom asked me, "What should I say to my kids when they ask questions? Should I say God just makes some people handicapped?"

Wow. That's a heavy question; a theological minefield even. And we didn't even talk long enough for her know about my pastoral background. So, in my most pastoral tone, I stammered, and then, I began to pontificate about giving children information appropriate for their age and level of cognizance of the world in which they live and blah, blah, blah, blah, blah. Blah.

I was so unnerved by the question and bringing the idea of God into what you tell a child that I was totally thrown off. The conversation got a little awkward and, to the relief of both of us, we switched subjects.

What I wish I said was that God allows plenty of problems into our lives so that we, as we live in community, have plenty of ways to bless each other and represent Him to each other. I wish I said that opportunities for redemption constantly present themselves from the time we're small children until we draw our last breath. What I wish I knew how to say to small child is that some are born strong and some are born weak and the strong please God when they protect the weak. That's how Jesus cares for us and wants us to care for each other.

When things go wrong, God gives us a chance to partner with Him to make them right.

Bouncing Allie

2011-03-08T16:11:00.001-08:00

This is how we bounce Allie every single day on an extra large exercise ball. She loves it.

Just ignore the man with male-pattern balding.

While waiting for some eggs…

2011-01-29T06:06:00.001-08:00

If your searched the phrase “it’s been awhile since I’ve posted anything here…” you’d probably get back a thousand pages of family type blogs like this one.

My mom and Nancy are the main ones that threaten me with bodily harm when I don’t post something about Allie for awhile. My mother-in-law has given up on the threats and various other promises of pain and torture when I get blog-lazy. So things just kind of show up when they show up. Sorry.

Story of Allie

2010-12-22T08:53:00.003-08:00

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…

2010-11-24T19:42:00.001-08:00

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

2010-11-16T19:11:00.001-08:00

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

2010-11-11T17:48:00.001-08:00

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

2010-10-19T05:07:00.001-07:00

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

2010-10-14T07:46:00.001-07:00

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

2010-09-15T06:13:00.001-07:00

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

2010-08-29T19:43:00.001-07:00

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

2010-07-22T07:19:00.001-07:00

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

How we swing

2010-07-05T15:29:00.001-07:00

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

2010-06-29T16:26:00.001-07:00

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

2010-06-27T05:31:00.000-07:00

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

Recovery

2010-06-27T05:25:00.001-07:00

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

2010-06-27T05:24:00.000-07:00

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.

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New Allie Videos

2010-05-29T07:59:00.001-07:00

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

2010-05-11T15:03:00.001-07:00

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

2010-04-30T05:21:00.001-07:00

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

2010-04-22T17:54:00.000-07:00

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

2010-04-02T19:03:00.001-07:00

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

2010-03-26T16:49:00.001-07:00

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

2010-03-15T19:38:00.001-07:00

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

2010-02-24T07:24:00.001-08:00

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

2010-02-22T17:54:00.000-08:00

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

2010-02-13T13:23:00.001-08:00

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

2010-02-06T06:57:00.001-08:00

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

2010-01-30T16:00:00.001-08:00

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

2010-01-30T15:43:00.001-08:00

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

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Christmas Posts

2009-12-31T05:49:00.000-08:00

I wanted to bring over some posts from my blog to Allie's blog. These were from a Christmas event at Allie's School.

Look who finally made it in from the North Pole...

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Each child used a push button operated speaker box to say their lines. The kids are having a blast.

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The Grinch fakes St. Nick.

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The school principal is here now introducing the next set: The Grinch That Stole Chrismas.

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Under the bridge

2009-12-31T05:48:00.001-08:00

This is Allie and I liveblogging (me) and swinging (her). A rain shower is passing over head so we've ducked under the Blue Heron bridge at Phil Foster park to wait it out. That's where this playground is.

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Holiday shopping for special needs children

2009-12-10T05:44:00.001-08:00

Here's a helpful list culled from an article I wrote online.

Lekotec Resources provides these helpful tips for making your shopping a win.

1. Multi-sensory appeal
Does the toy respond with lights, sounds, or movement to engage the child? Are there contrasting colors? Does it have a scent? Is there texture?

2. Method of activation
Will the toy provide a challenge without frustration? What is the force required to activate? What are the number and complexity of steps required to activate?

3. Places the toy will be used
Will the toy be easy to store? Is there space in the home? Can the toy be used in a variety of positions such as side-lying or on a wheelchair tray?

4. Opportunities for success
Can play be open-ended with no definite right or wrong way? Is it adaptable to the child's individual style, ability, and pace?

5. Current popularity
Is it a toy that will help the child with disabilities feel like "any other kid?" Does it tie in with other activities like books and art sets that promote other forms of play?

6. Self-expression
Does the toy allow for creativity, uniqueness, and making choices? Will it give the child experience with a variety of media?

7. Adjustability
Does it have adjustable height, sound volume, speed, and level of difficulty?

8. Child's individual abilities
Does the toy provide activities that reflect both developmental and chronological ages? Does it reflect the child's interests and age?

9. Safety and Durability
Does the toy fit with the child's size and strength? Does it have moisture resistance? Is the toy and its parts sized appropriately? Can it be washed and cleaned?

10. Potential for interaction
Will the child be an active participant during use? Will the toy encourage social engagement with others?

Holiday shopping for special needs children

Rolling with Vets

2009-12-05T09:10:00.001-08:00

Today Allie ran with vets from the Achilles Freedom Team at the Palm Beaches Marathon Festival. Downtown West Palm Beach was crazy with activity as wave after wave of kids grouped by ages ran a race. Ronald McDonald co-officiated the start of the race.

The last wave of kids to line up was Allie's group in their wheel chairs. They ran the race shoulder-to-shoulder with wounded war vets from the Afghanistan, Iraq and Viet Nam wars.

Allie's escort was a salty Viet Nam era Marine with over 26 marathons under his belt. This guy, a war-time amputee, continues to live a heroic life of service. It was our honor to have our little crew escorted by this team of vets.

Below is video of the finish.

Taking steps

2009-11-26T13:18:00.001-08:00

Allie's school sent her home with this walker the other day.

Thanksgiving at The Arc

2009-11-25T19:10:00.001-08:00

The Arc mixed in all the essential ingredients for a perfect Thanksgiving celebration on Tuesday. Family, friends, puppets, and a tasty buffet of food filled every flat surface.

The Kids on the Block puppet show drew a crowd that arranged itself in a semi-circle around a small stage. Forty or fifty of children in wheelchairs and customized walkers, along with their care givers and parents clapped and cheered as performers entertained. The life-sized puppets portray characters just like the children in the audience; they have one-of-a-kind personalities and unique life stories. Some are handicapped, others affected by divorce, and some victims of abuse. And they know how to have fun and get the people around them involved. The excitement was contagious. Children weren't the only ones sporting huge grins. Grown-ups laughed out loud and beamed as they watched their kids join in the fun.

Moms and dads, uncles and grandmas sat together with their kids, connected with old friends and made new ones around a feast of deviled eggs, cranberry sauce, stuffing, and turkey. Gravy pooled in mashed potatoes and green bean casserole was devoured by children who never imagined veggies tasting so good. Blessings were counted and thanks given as care givers and generous benefactors circulated among children and parents extending a warm welcome.

After the meal, children were allowed to pick a gift from a table piled high with toys. The Arc's mission is to improve life for special needs children and adults through education and advocacy. The Thanksgiving event fulfilled the mission with style and pizzazz.

www.dontshake.org

2009-11-11T09:42:00.001-08:00

I went to a dynamite talk today given by Michelle Poole, cofounder of the National Shaken Baby Coalition.

I walked into the multi-purpose room at The Arc School (Allie's school and the host of the event) and was knocked a little off balance. There were about twenty-five women in the room and I was the only dude. That's a great ration if I was on the dating circuit, but not necessarily cool for an event like this.

Poole launched into her presentation and the room filled mostly with caregivers was spellbound. And I don't think there was a dry eye in the place. The only thing that kept me holding it together was the knowledge that I was the only male in the room.

Below is her testimony.

If your granddaughter lives through the night, she will be a vegetable. What do you do when confronted with those words?

On November 21, 1994, I heard those exact words. My 3-month-old baby granddaughter, Gabriela, sustained a traumatic brain injury as a result of being shaken. I can only describe that moment as numbing. This event changed my life and the life of our entire family. That fateful day, my son George admitted in a moment of anger and frustration that he shook his infant daughter as he cared for her and her twin sister while their mom was at a part-time job. Gabbi was shaken on a Saturday. George and his wife, fearful of what was happening, waited until Monday to take her in for help. When I went to the hospital, I had no idea what had happened or the extent of her injuries. When I saw Gabbi in the Pediatric Intensive Care Unit, I did not need anyone to tell me she was close to dying; I could see that through the tears in my eyes.

That night my family began the shaken baby syndrome journey.
I thought I had told him everything there was to know about caring for an infant. I never told him not to shake her. It never crossed my mind that anyone would shake a baby or that shaking a baby would cause a fatal or near fatal injury. That is the hidden problem of shaken baby syndrome (SBS). No one ever thinks to tell a parent or child care provider the dangers of shaking a baby in a moment of frustration.

Why would you need to tell them that? They certainly know that would harm a baby--or do they? Did you know?
That first year was surreal. My 24-year-old son was going to jail for 5 years. I was now at the ripe age of 44 raising two infant girls that I loved. I wanted to love them as a grandmother not their mother. I wanted to spoil them and let them get away with things their parents wouldn't let them do. I wanted them to go home at the end of the day or after a weekend from Nanas. Instead, I was going to court for custody hearings and case plans while Department of Children and Families of Florida was monitoring the care of the girls at our home.

This journey was no family picnic.
The first five years of Gabbi's life were immensely difficult. I had no experience dealing with a child overcome with such severe medical needs; one who was unable to communicate even the slightest life-sustaining need without crying or screaming. I was now caring for a child with seizures, tube feedings, endless diaper changes, multiple doctor visits and late night emergency room trips. I had to learn a new vocabulary filled with medical terms and diagnoses. I felt as if I was adrift at sea. This was a very strange feeling.

I have always been in control of my life, and now I wasn't. It was time to take charge once again.
We finalized adoption of the girls in 1996. George was in jail. The twin’s mother understood that the children were better off with me, but we still wanted her to have a role in their lives. She was their biological mother and they needed to know each other. She has since moved away to start a new life and is doing very well. She calls to see how the girls are doing and speaks with little Michele.

With the adoption complete, we began the journey of a SBS victim family. I was ready to get started.
I heard about a conference in Utah on shaken baby syndrome. So in September 1998, I attended my first conference on SBS. What an enlightening, but heart-aching experience it was. I learned all about SBS, what people were doing to prevent it, how the legal system works and when to investigate and prosecute perpetrators. I was learning what all the medical terms meant. I was also learning that there were far too many SBS cases each year and more awareness was needed. I learned that there were many families, just like me, wanting to learn more about SBS. In a very special family gathering arranged by the conference staff, we were all able to share our stories and mourn each other’s pain.

I saw children there who looked and functioned just like my Gabbi. Isn't that strange, we don't say, how our children behave, we say, how they function. Then there are the families of children who did not survive.
Their pain is intense.
I left Utah with the strangest of feelings. I knew I could go home and start an awareness effort in my area--that was easy. What wasn’t easy and what haunts me today is the pain of all the families and the helplessness we all share.
I went home armed with so much information. I created a presentation, and off I went. I started contacting schools in my area, dropping off literature and asking to talk to their students. I went to daycare centers and dropped off SBS information. I visited drug rehab centers and spoke to their clients. I contacted women’s shelters, and other like-minded agencies in the area to give them literature and to request to speak at one of their events. I would talk to anyone if they stood still long enough. Some families don’t feel comfortable when people look at their child with that wondering glance.

For me it is an opportunity to spread the word to Never Shake a Baby.
I had looked for SBS web sites prior to going to Utah. There were some, but I didn't get a lot of information at the time. The information that The National Center on Shaken Baby Syndrome (NCSBS) has is wonderful and provides the most accurate accounting there is to date on SBS. There are now many SBS family sites dedicated in honor of a child’s memory or life struggle. More and more sites about infants contain information regarding the dangers of shaking a baby. The Internet has provided great opportunities for continuing access to information on SBS.

Families and professionals are taking charge and providing awareness programs all over the country. In addition to Utah, the NCSBS has held conferences in Australia, Scotland and Canada. SBS is not something that only happens in the United States. Many of these groups have worked to pass legislation for mandatory education in hospitals. Many have passed laws to stiffen punishment for perpetrators.

Many have spoken on television or in print sharing their own Shaken Baby Journey. There is still much to do.
Our family is now in its 10th year of Our Journey. The twins are 10 years old. Little Michele is entering the fourth grade with glowing grades and a very positive look on life. She is the star on their basketball team. Hilary Duff is her idol. Michele loves her sister and helps with her care.

When she runs for her track team she says she is running because Gabbi can't.
Gabbi attends a charter school in Palm Beach that provides all her therapies as well as education. Gabbi only functions as a 5-month-old but her school has provided ways for her to actually communicate some of her needs and wants. Gabbi knows that she does not like a wet diaper, so they put her on the potty every hour. For additional bathroom visits, Gabbi makes the sign for potty, most of the time after she wets--but hey, we are making progress. She has seizures, sometimes as many as 15 a day. We have tried diets along with medicines and have been successful, but her body changes and we need to find new ones. We are currently using a medicine that we can only get from Europe. Amazing enough we have gone from 15 seizures a day, to 2, 1 or none. Gabbi has had multiple hip surgeries, which I think take more out of me than her. She goes with me to visit middle schools, high schools, parenting classes, drug recovery programs, jails, child abuse prevention seminars, church groups, police, nurses, child protection workers and guardian ad litem groups. You name a group and we go. Gabbi has even been to Tallahassee and Washington D.C.

Her appearance says more than any words I can say.
My son was released from jail five years after Gabbi was shaken. I not only lost my grandmother role, I lost my only son. With the circumstances as they are, a relationship with him is impossible. I have to admit that I get very frustrated with families defending their sons who've shaken their child. This makes the life of the mom nearly unbearable. If a daycare provider had shaken his or her child, everyone would want revenge. If it is the father, they make excuses and even try to blame the mother. Then there are doctors who make careers out of consistently testifying for the defense. They spread the misconception that there is no such thing as SBS. If that myth continues we will still have infants with their brains being blown apart for no reason at all.

Somehow, we have lost sight of the victim.
Many ask me, “How do you do what you do?” I hear, “You are so strong”, and “They are so lucky to have you”. I respond by saying, I use the 12 steps of AA; I have no addiction problem, but I have found this programs structure gives me the strength to carry on. I believe very much in God and His love for me. I really am not that strong. There are many times I allow myself to picture Michele and Gabbi playing as twin sisters, when I do--I weep. On birthdays and Christmas it takes all the strength I can find not to spoil the day for Michele. Luckily, I am the lucky one. All it takes is little Michele’s smiles, hugs or just calling me Mom, and I know I am the lucky one.

Every time Gabbi clears another hurdle in her life and proves the doctors wrong, I know that I am the lucky one.
The SBS Journey can be compared to the lives of families who have lost their children because of drunk drivers, child abductors, SIDS, and even accidental drowning. The difference--the perpetrators are relatives or care providers, the ones who love and care for the child with all their heart and would never intentionally injure them. But in 10 seconds of frustration, the consequence is the same death or permanent injury.

Our journey continues. We still continue to cross paths with many who are just starting the journey or have been traveling with us for a very long time. We try hard to continue to spread the word. Some people will tell you to make sure your seat belt is buckled, to put your child in the back seat away from the air bag, to wear a helmet when biking or skating, to never let your child sleep on its tummy for the first year, never leave your child unattended at a swimming pool and to stay away from strangers. SBS victim families will tell you, NEVER, EVER, SHAKE A BABY!

Respectfully,
Michele Poole Grandmother and Adopted Mom to twins Michele & Gabriela Poole Born 9/4/94, Shaken 11/19/94

Michele served on the National Center on Shaken Baby Syndrome Governing Board for five years and was Board Chair from 2006 to 2008. During her time on the board she was chairperson of the strategic planning committee and fundraising committee. Michele established the National Center on Shaken Baby Syndrome annual giving campaign and has worked diligently to raise funds and support policy. Michele also is was a founding member of the Shaken Baby Coalition www.shakenbabycoalition.org and served as President. Michele was Chair of the Family Reception event at the 2006 and 2004 North American Conferences on Shaken Baby Syndrome and has been instrumental in raising funds and establishing scholarships for SBS victim family members to attend the conferences.

A Case of Man Bites Dog

2009-11-06T16:57:00.001-08:00

I hope People for the Ethical Treatment of Animals (PETA) doesn't get their hands on this video.

Allie initiates this poor pup into the Mondok household by trying to pierce his ear. Sounds cruel, I know, but they clip the ears of dobermans and boxers and pitbulls all the time.

So what's the problem?

Chums

2009-11-04T16:49:00.001-08:00

Allie's school is a God send. Today Allie peed on the potty for the third time. It's officially not a fluke.

Here is Allie with her very extroverted friend and a hippo. They are obviously enjoying each other's company.

I was just telling a friend today how much we are all learning and growing thanks to Allie attending school.

First Long Ride

2009-10-30T04:41:00.001-07:00

If you've been following Allie's story at all, you know that a long ride in the car usually leads to some kind of a melt down for her. That's the reason we haven't taken any rides longer than a half hour in duration since we moved back to Florida. Until today.

Last week we took a ride to down Hollywood, about an hour and a half from here in morning traffic. And Allie was amazing. She sat by herself in her car seat and just listened to her songs and played with her little toys. On the ride home she watched Veggie Tales and was happy all the way to our door step.

We were down in Broward visiting a pediatric neurologist. Allie has been having seizures, but we didn't know it. We thought they were just some kind of spasm until she had a couple at school and they told us they were definitely seizures. Her teacher encouraged us to get a video of her having one so we did and showed her new doctor today. He said that she is definitely having epileptic seizures.

This is disappointing news. But we love this new doctor. For the first time we have a neurologist for Allie that seems like a normal person. Her previous neurologist were difficult to talk to and extremely negative and unimaginative. But this new doctor is great.

Allie has had a pretty long stretch without any more seizures, thankfully. The new doc prescribed some medication that seems to really be working. Allie is schedule for a number of examinations, and MRI and an EEG. Hopefully some of her other medications will be reduced.

Several times a week we get emails and Facebook messages from people praying for Allie. I can't even begin to express my gratitude for this. I try to reciprocate by praying for every prayer request that hits my inbox, but I know I'm praying for less people than are praying for us. I don't know where we'd be without your intercession and prayerful petitions.

Where to get Your Pumpkin

2009-10-22T05:12:00.001-07:00

You need a pumpkin. There is no getting around it. You must acquire a pumpkin no matter what it takes. That's your problem.

Here's your solution. Ride on over to Juno Beach Saturday morning and pick yours up at the Yankee Peddler at 12174 US Hwy One. All proceeds benefit Allie's school, Potentials School at the Arc.

School Picture

2009-10-21T11:38:00.001-07:00

Allie Mondok
October 2009
Three years old
First school picture

Huge Milestone

2009-10-13T12:01:00.001-07:00

Everyday at school Allie is sat on the potty twice. She usually sits and fights and cries. Today she peed. First time.

Just thought you should know. I know, I know. This is one of those little time capsules that will be unearthed to embarrass her some day.

I'll enjoy this memory again, then.

Allie Swinging at School

2009-10-10T12:13:00.001-07:00

When Allie is having a bad day, the swing is just what the doctor ordered. Here, Lana has started the launch sequence.

Coming at ya'. Notice how well Allie is hanging onto the rope.

She looks SO big. Her tennis shoes are a couple of sizes bigger to accommodate her braces. I think the big looking feet seem to add a few inches to her height.

Along with the oversized shoes, Allie is wearing a vest under her shirt that helps her sit up and hold her head up. This gives her get better use of her arms and vision.

Bowling

2009-10-03T08:04:00.001-07:00

I've wondered often about Allie's capabilities and potential. But I never asked myself if I'd thought she'd be able to bowl. But her school dares to ask and DO things I've never given much thought to.

This week Arc Potentials loaded up a bunch of vans with kids and wheel chairs and hauled them all down to Lantana to bowl.

Allie was a little freaked out at first. She had no idea what they wanted her to do in that place with the crazy sound of wood being knocked into oblivion by a big, heavy poly-urethane ball. But once she got going, she bowled a perfect 300.

Just kidding. But she had fun.

Red Light, Green Light

2009-09-23T12:33:00.001-07:00

Yesterday I arrived at Allie's school to find her standing in this walker. All the kids who could stand with this kind of assistance were. They were playing red light, green light. In this picture, Allie has a green light and Mary is helping her go.

Most of the kids in Allie's school have difficulty talking. They're all vocal, mind you, but making intelligible words is the hard part. So they teach the kids to use a switch box. The switch box wires speakers and big buttons together. In this case, one button is programmed with "green light, go!" and the other, you guessed it, "red light, stop!"

You remember the game from recess, right? Well, at Allie's school, they're using the game to teach the kids to walk and interact. It was a hoot to watch. But it made me want to cry a little to see these kids having so much fun yet struggling so hard to do the things I take for granted. It's a whole new world for me.

I must say that these teachers are amazing; heroic. They are so dedicated to the success of these kids. Their hope is infectious. That also makes me want to cry a little.

After Allie made it across the room, it was her turn to man the switch box. She had so much fun pushing those buttons and making the other kids go and stop at her beckoning.

The walking part is really difficult for her and she struggles so hard to do it. I'm amazed at what she's learning and doing. What a fighter.

New Allie Pics

2009-09-19T14:23:00.001-07:00

A Full Week of School

2009-09-18T16:44:00.001-07:00

Allie made it through her first FULL week of school. The week she started school (almost a month ago), Thursday was her first day. The next week she was sent home sick on Monday and never made it back. The following week started with Labor Day making it a short week with a sick day in the middle cutting it shorter still. This week started strong on Monday and finished even better on Friday.

Everything is different now. We used to drop off and pick up a crying little girl. Now she's happy to be at school. She's off the bottle. She makes sounds trying to talk. She says "hi" when the teacher says to. She sits plays by herself for extended periods of time. They're potty-training her.

For the first time in two and a half years, we feel like we can breathe again. The teachers at her school are reaching for goals we never knew were possible. And Allie is learning and getting with the program.

We have more hope now than we've ever had.

When Allie was first introduced to physical therapy, the goals that were set were aggressive, but always out of reach. It was exhausting for all three of us. But now, the three of us are on Cloud Nine. There's momentum; there are results. We feel like we're finally hitting our stride.

Allie in the Park Video

2009-09-14T03:04:00.001-07:00

Here are a few more clips of Allie having fun at Kelsey Park with Mary the Physical Therapist.

Arc in the Park

2009-09-13T18:02:00.001-07:00

Saturday Allie's school, Arc Potentials hosted an event at Kelsey Park in Lake Park. The school needs to fund raise and they had tons of fun with this one.

Below are some pictures and some video. Mary, Allie's physical therapist, grabbed Allie and introduced her to the dog you'll see in the photostream as well as the video. Allie loves this pooch which ain't cool because I'm not too good with pets.

I think the Charming and Beautiful Susan had more fun with this puppy than Allie did. More bad news for me.

And below, we're gathered around the swings. Aaron needs an attitude adjustment.

New Routine

2009-09-03T15:41:00.001-07:00

I'm not sure what to be. Sad or happy. On the one hand, we drop Allie off at school and the separation anxiety of parent and child is excruciating. On the other hand, the Charming and Beautiful Susan and I have not had any time away from Allie in over two years except on about three very rare occasions. So now we can (and are) getting reacquainted with each other.

The day works like this: we get Allie ready for school knowing we'll have time on our hands to really get things done. And we're excited. Then we get her dressed, and reality hits us: Oh no! we have to give her to somebody else. We put her in the stroller and it feels like we're just going for our morning walk. Then I'm driving in the car and I almost (I said almost) burst into tears knowing she's going to have to figure out how to get along without me. I turn into the parking lot at school, get her into her stroller again, steel my nerves, and roll her through the double doors. I park her with the other kids. And it hits me: I get to leave her here! And, like Flash, I'm a streak of light bolting out the door.

The guilt never seems to catch up with me. I leave it in the parking lot and enjoy time with my wife or dig into projects at work with blessed few interruptions. Allie's attendance at school has lifted a huge burden from our shoulders. We know she's in good hands and is improving every day. The guilt and sadness over leaving her is diminishing more quickly than we imagined.

This is video of Allie in her new, cheap highchair. This is her third high chair. It's not easy to find one for a three year old.

In the picture below, you can see where I got busy with a drill, saw, and razor blade to modify this chair and install a strap. In the video above, she's strapped in with a belt from my closet.

In this picture Allie is standing tall. The pink vest she's sporting was given to her at school. It stabilizes her torso and keeps her back straight and head up. She is also wearing ankle braces shoved into over sized tennis shoes. She practices walking in physical therapy at school.

This is how we found Allie today when we arrived to pick her up this afternoon. Usually when I walk in, I listen for my crying little girl and hone in on her howls. She's used to taking a nap at eleven so by her 12:15 pick up time, she's done. Today, we walked in and she was in front of this computer monitor glowing with brightly colored backgrounds and animated soap bubbles floating across the screen. Allie uses her hands to trace their track trying to touch them.

Fixed to the frame of her stroller/chair was a big red button (like and "Easy Button") within reach of her right hand. When Allie sits for awhile in her chair, she starts fussing. A teacher will then start rocking her in her chair to calm her. She likes the movement. So this button is connected to a speaker that says, "rock me, please." So instead of fussing, Allie just pushes the button. I was amazed that she got this in just one morning. She can't talk, but she can use the button to communicate.

Ever since our first interview when we got back to town, these educators thought Allie had the aptitude for this kind of communication. It's good to see that they were correct and that Allie easily grasps the basics of communicating with those around her.

Sent Home Sick

2009-08-24T13:45:00.001-07:00

It's only Allie's third day of school and she's using her sick days. That's not the kind of work ethic I want to instill in my kids, but what are you gonna do? Once they find out how to exploit sick days, it's a slippery slope.

I'm trying to explain to Allie that if she doesn't use all her sick days, maybe the school will buy them back. We can use the money for a shopping spree at Toys R Us. Or we can roll unused sick days into vacation and take an extended trip like to Paris or Branson, Missouri.

She's not biting. She sees the sick day as part of her compensation package.

Emotional Trauma

2009-08-21T17:13:00.001-07:00

Don't let the above title cause you to feel sorry for Allie. Feel sorry for us. We're the ones traumatized by separation anxiety the past two days when dropping Allie off at school.

Allie started school yesterday at ARC Potentials in Riviera Beach. There are very few people we've ever been able to leave Allie with. There's been three. So we have some trust issues. The Charming and Beautiful Susan hung out her first day, but it was pure torture for her (Susan). She had to totally turn over control. And Allie was not happy. The Charming and Beautiful Susan's countenance fell.

We felt that a new strategy was necessary. We need to trust them. Since that's difficult, all we can really do is drop her off and peel out as we flee the premises. But today, as we handed Allie over, we were snagged to fill out paperwork. And we had to listen to Allie as she reluctantly started her new routine. The first task: sit on the potty.

This is a paradigm shift for Allie. New concepts make her cry. And here we are, filling in prescriptions, medical conditions and doctors' names on forms. We just wanted to fix Allie. Or bolt.

But once we left, well, wow. We were alone. We went to breakfast, we went to the store. It was like a date. We've had maybe five of these in the past two years. It was nice. And it's nice to know that we'll be able to get reacquainted.

The following video was shot by Uncle Aaron as we picked Allie up this afternoon.

She isn't quite into the new routine yet. Mary is in the frame with me. She is a dynamite physical therapist and teacher. We are amazed at how much the Charming and Beautiful Susan and I have learned from her in the past two days. We could have used her as a personal counselor for the past two years.

Once Aaron and I got Allie into the car and put on her favorite riding around song, she was fine.

Corner Chair

2009-07-15T13:45:00.001-07:00

Dancer Joan at physical therapy gave Allie this chair to take home the other day. Allie loves her new-found independence.

Cute and Fuzzy

2009-07-13T07:13:00.001-07:00

Allie's cute and the bunny is fuzzy.

Allie and Emey

2009-07-10T16:21:00.001-07:00

We had friends over one afternoon this week. This is their daughter Emey playing with Allie on her favorite toy.

Birthday Song

2009-06-26T03:02:00.001-07:00

Today is Allie's third birthday and I'm missing it because I'm in Hungary. Not only that, Charity's birthday was this week, too, so I made this video to kill two birds with one stone.

Workin' It Out

2009-06-19T06:30:00.001-07:00

Here are some pics the Charming and Beautiful Susan snapped with her phone yesterday at physical therapy.

This is Allie on a swing. We're working on torso control, balance, and her grip. This is her favorite Physical Therapy activity.

These are Allie working on crawling. She wants to craw soooo badly. She lacks the arm strength and motor skills to coordinate crawling on her own. But she's definitely motivated to move.

Stand and Deliver

2009-06-14T12:48:00.001-07:00

This is Allie's new thing-a-ma-jig for standing practice. They started her in it at physical therapy for eight minutes at a time and then sent us home with it. She went eleven minutes this afternoon. The charming and beautiful Susan is talking about going for fifteen minutes tomorrow.

At physical therapy when she stood in this, she freaked out. But she did well here at the house. She had fun standing playing with toys and gabbing at us.

Grandma Makes Guacamole

2009-06-06T04:45:00.001-07:00

There is one thing you can set your watch by around here and that's Grandma's daily visits. She's here every morning before work. This morning Grandma was here in time to help feed Allie. Allie ate half an avocado.

She wore the other half.

Usually, I'm the culprit in making Allie messy. It's nice to have someone else to blame for Allie's messiness. That is why I like Grandma so much.

Allie's Legs

2009-06-03T19:05:00.001-07:00

Great news: the braces are coming off soon! At least during the day. Over the next month, Allie has been cleared for weight bearing exercise in physical therapy. And if Dancer Joan says it's okay, in a month Allie will have braces on the ankle and feet only.

At night, however, she'll have to wear the full HKAFO's. Her hips are mostly healed since the surgery, but the doc doesn't want her to lose any ground, so at night she'll have to stay in the full contraption. It keeps her legs open and her hamstrings stretched. This will give Allie the maximum use of her legs in the future. (We're not quite sure what "maximum use" is yet, but this will give her her best chance.)

We take her out of her braces for about an hour a day for exercise, a bath, and even a trip to the pool. She loves to have time out of her braces, but, believe it or not, she's also comfortable putting them back on. She's used to the support she gets from them.

Since the operation, she is much more comfortable in her stroller. Especially with the braces. They give added stability and she is able to stay in the stroller longer. Before her operation, her hips hurt since they were growing out-of-joint. But now, we roll out for a two mile walk over the Blue Heron Bridge every morning. It's time together we'll always treasure.

Next Phase

2009-05-16T06:57:00.001-07:00

Allie will wear these braces for the next four months. These are called HKAFO's; that is Hip-Knee-Ankle-Foot-Orthosis. We thought maneuvering her in a cast was tough. That was a cake-walk compared to our new setup. Allie weighs much more in this contraption than she did in the cast (she probably weighs more than you did before your last diet). And she still has to wear this thing 24/7.

I have to tell you: we were not expecting this. We were told that Allie would wear braces, but from the knee down. We lost it when we saw Jeff The Braces Guy bring this monstrosity out.

I usually try to be upbeat in these posts, but I am not at all upbeat about this. This is depressing. Enough already.

The good news is we are able to take Allie out of her braces to give her a bath and today I plan on taking her up to the pool for a dip. That should be fun. She can also come out of it at physical therapy when Dancer Joan works her magic on her.

But she has to sleep in this set up and that's hard. She's more comfortable in this than the cast, but she has to constantly be adjusted through the night because she can't roll herself over. So we constantly give her the old heave-ho all night to keep her from cramping up and getting sore. Don't worry; we've gotten use to not sleeping through the night over the past two years.

Allie is doing much better through all this than we are. One thing the medical professionals have continually said is that children are amazingly resilient. It's the parents that panic and freak out most. But these braces conjure up childhood memories of the Dark Side of the Force. I'm pretty convinced that these braces are manufactured by the same evil corporation that assembles uniforms for Darth Vader's Storm Troopers, protectors of the Death Star.

Cast Away

2009-05-10T13:35:00.001-07:00

For six weeks we looked forward to Allie having her cast removed. Friday was the big day.

What a day.

The front of the cast was discarded while the back half of the cast was Ace bandaged to her legs to keep her legs in place. From the doctors office, she went to be fit for a hip-knee-ankle braces.

The past few days have been a huge adjustment for Allie. A painful one. But she wants to be happy.

This morning, we unwrapped her legs to allow her to become reacquainted with them. Below are a couple of videos of her getting to know how to move her feet without them rubbing against each other.

Phase Two

2009-05-07T05:11:00.001-07:00

Project Duct Tape has moved into it's second phase. We've discovered a design flaw in the intersection of the cross-bar with the cast on her left leg. Our research and development department spearheaded by the charming and beautiful Susan submitted designs yesterday for the modification pictured below.

The retrofit only has to make until Friday tomorrow morning when the cast is cut off.

The Morning Project

2009-05-05T04:37:00.001-07:00

How many uses can you think of for duct tape? This morning we strengthened the cross-bar on Allie's cast. The bar broke inside it's fiberglass wrappings. So we splinted the break with a plastic chopstick and taped it up with neon green duck tape.

We splinted the splint. Nice.

By the way... the green stuff in Allie's mouth is avocado, not misplaced scraps of green tape. Honest.

Houseful

2009-05-04T16:00:00.001-07:00

It was a busy afternoon at Allie's house today. Mommy came and took me for a walk.

And Grandpa came over with a pizza in each hand. Then Grandma showed up in time to help give me a bath.

Back and Forth

2009-04-21T14:53:00.001-07:00

We've made it half way. Allie has had her A frame cast on for three of six weeks. We all are doing much better than we thought; Allie is adjusting fine and the charming and beautiful Susan and I have not killed each other or even disemboweled one another. I think that's a good thing.

We have date for the cast to come off: May 8. Allie started back to physical, occupational and speech therapies today. She seemed happy to see everybody down at the Children's Therapy place on Indiantown Road.

We also wanted to say thank you to everybody that brought us food while we were in the hospital and since we've been home. So thanks Dave and Leyette, Lyndsey and Andrew, Jim, Yolanda, Jessica and Bob, Lindsey and Robin, Joyce, Luann, and Julia for making cookies. And some of you still owe us some food. You know who you are. And if I forgot you, sorry about that. You know who you are.

Allie had her stitches removed last Friday. But the incisions got infected so we've been back and forth to the doctor. They're getting better.

The easiest thing about this has been lovin' on Allie. She's so loveable.

Amazingly Resilient

2009-04-09T13:38:00.001-07:00

This kid has been pretty happy the past couple of days. Every day gets better. Dr. Bayhnam said that kids are "amazingly resilient" after these operations, but we didn't believe him. We stand corrected.

Above is Allie in her new wagon from Grandpa Jim.

This is from this morning:

First Weekend

2009-04-06T05:11:00.001-07:00

Our first weekend home from the hospital went way more smoothly than we expected. Caring for Allie has not been the post-operative nightmare we thought it was going to be.

Dr. Baynham did say that kids are amazingly resilient after these operations, but we just thought he was painting a rosy picture for us. You know, giving us hope or something crazy like that. To which we rolled our eyes and politely nodded.

But we stand corrected.

Dr. Baynham didn't have to do all the work he set out to do, thankfully. One of the steps he thought he would have to take in the operation was breaking Allie's pelvic bone and reshaping her little hip sockets. After he lengthened her muscles and reshaped her femur bones, everything went right into place. The payoff: a thigh-high instead of waist-high cast. Allie's mobility is much greater making our lives and her recovery much easier.

We attribute these fantastic results to prayers answered and the fantastic skill of our doctor. In that order.

Home

2009-04-03T17:50:00.001-07:00

Be it ever so humble, there is no place like home. At least that's what Allie seems to think.

We're delighted that Allie didn't have to have her pelvic region operated on. That means the cast is shorter than we anticipated and the payoff is huge. Allie can sit up, she can ride in the car, we can hold her. Ultimately, she's not nearly as limited (and, thus, neither are we) as we expected.

Let me just say that the eight day hospital stay was torturous. I've drafted a ripping criticism of that hospital, but it will probably stay unpublished. But I will probably refine and rework the draft for therapy's sake. The hospital stay was brutal.

Below is a video of me working some tangles out of Allie's hair. There was no way to wash her hair in the hospital and since all she did was lay on her back, her hair on the back of her head is twisted and tangled into dreadlocks. The charming and beautiful Susan is threatening to cut them out, but I'm determined to untangle them.

Nothin' is Easy

2009-04-02T07:05:00.001-07:00

The only thing that comes easy with Allie is love. She is unbelievably loveable. She gives and receives love easier than any person I know.

But she's having it tough. She contracted Strep B while in the hospital. Doctors believe colonies of the bacteria were present on the tip of the catheter and stowed away when inserted during the operation. So the amazing team of St. Mary's medical pros is watching Allie around the clock in the PICU.

The charming and beautiful Susan and I are spending most of our time with her. We alternate taking a break for a few hours each day to go home and get cleaned up and refreshed.

Thanks for all the love you've been showing us through your visits, notes, emails, and meals delivered. You're kindness is keeping our heads above water.

'And when did we see you sick or in prison and visit you?’
And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these dmy brothers, you did it to me.’
Matt. 25:39, 40 (ESV)

Allie Smiles

2009-03-30T05:59:00.001-07:00

Allie's back. She started doing better last night. She hasn't had any morphine in close to twenty-four hours. She was getting it every two. Last night I snuggled with her all night in the hospital bed which is no easy feat when you're as big as me and your baby is wearing an A-frame for a cast.

This morning, she was making all of her familiar sounds, trying to chat us up in her little Allie way, and singing. We had her cartoons on this morning and she seemed happy to be back in her life even if she is in the hospital.

She really turned a corner yesterday afternoon when our close family friend Nancy came in and prayed over her. We saw Allie's fever drop, swelling go down, and a return to alertness after Nancy's visit.

Prayer works. Work it.

I Held Her

2009-03-29T06:29:00.001-07:00

I held Allie yesterday but couldn't think of a tactful way to tell her that she weighs a ton more. How do you ever say that to a female?

Her little green cast is cute, bulky, clunky, and heavy. But she was as peaceful as an angel when I walked her around the PICU in my arms. She was responsive and at home in my arms.

Last night was rough, though. She had a fever all night. A number of things can be blamed. It could just be the invasive nature of the surgery. She's anemic, so they gave her a blood transfusion - that could be to blame. Or.. she might have an infection. They took cultures, chest xrays, and blood samples to narrow down the possibilities. So keep praying.

Here's the work she had done to her hips.

Keep praying...

Thanks.

Allie Status

2009-03-27T21:08:00.001-07:00

Allie went in Thursday to have her hips repositioned and muscles lengthened. Her hips have migrated out of joint because her bones are growing at a faster rate than her muscles. So, like a bow string pulled tight, her bones have too much tension on them.

What the doctor planned on doing was 1) breaking then re-positioning her femur; 2) breaking her pelvis and re-shaping her hip joint sockets to receive her hip bones; 3 lengthening her her leg muscles by making incisions in three places to allow additional movement and flatten her feet (she's always on her tip-toes).

When the surgeon broke and repositioned her femurs, they "popped" into socket and the work on the pelvis was not needed. That's great news.

Allie is currently in the Pediatric Intensive Care Unit (PICU). The medical staff is still working to manage pain. We also need to have Allie take food orally before she can be released onto the floor and then home. Below are some videos. You can go to Facebook to see some photos.

Before right after taking "Happy Juice"

After, recovering in PICU

Thank you for your prayers, visits, encouraging text messages, and phone calls.

Postponed

2009-03-24T08:25:00.001-07:00

If you've been praying for Allie's surgery today, thank you. The surgery was postponed until Thursday. It turns out that a brace that Allie will need became inconveniently unavailable this morning. This news was delivered after Allie was already sedated.

So let's do this again in a couple of days.

Thanks, Grandpa Jim

2009-03-14T06:03:00.001-07:00

Grandpa bought Allie this tricked out little chair so Allie can sit up and enjoy the world vertically.

Allie's New Spoon

2009-03-14T04:06:00.001-07:00

Eating and ergonomics. It's something we've always done without thinking. We naturally have everything easily within reach and we have no problem getting food to our mouths with normal utensils.

Not so with Allie. Allie's hands don't bend normally, so the spoon has to be bent. And she doesn't have the coordination to only put the spoon so far into her mouth (as opposed to down her throat) so there's a little mouth-guard attached that works as a spoon stopper.

Here's a demo:

Blogging Slacker

2009-03-13T18:43:00.001-07:00

My mother-in-law called the other day to complain that nothing new about Allie has been posted.

I just want to let everyone know that I have reprimanded Allie and she will post something very soon.

A Little Worried

2009-02-15T15:52:00.001-08:00

I'm cleaning up baby puke and I'm worried about what life will be like a few weeks from now. On March 24, Allie will have surgery. She has cerebral palsy and brain damage brought on by an injury about a year and a half ago. Her bones are growing faster than her muscles and this is causing her hips to migrate out of joint. In fact, instead of her hips being a round socket, they are more of a flat surface. So the joints need to be reshaped and her hips repositioned. Along with that, she has to have some leg muscles lengthened.

After the surgery is over, she'll be in a cast from her waist down for six weeks. She'll spend three days in the hospital and then come home. We are unbelievably anxious about what life will be like for Allie and us. Will you please pray?

Prayer request on Susan's blog

Row Your Boat

2009-02-15T02:13:00.001-08:00

More of Allie working out with Joan.

Good Morning, Allie

2009-02-15T00:32:00.001-08:00

Here's Allie stretching out with Joan her new physical therapist.

YouTube - Allie at therapy

2009-02-12T03:51:00.001-08:00

Here's Allie with Marium her new speech therapist. More videos to come.

The Magic Formula

2009-02-03T01:10:00.001-08:00

Allie has had a cold the past few days which is quite paralyzing for the whole family. She didn't sleep more than fifteen or twenty minutes straight during the night or during her mid-day nap for two or three days. She doesn't know how to blow her nose. She doesn't know what to do with post-nasal drip so she throws up. This is her subtle way of really making the party lively.

Grandma Yolanda comes down twice each day to do her share of Allie loving and holding and hugging. Allie gets so excited when Grandma gets here even when life is a living nightmare because of the cold and the puking. Even though Allie aches and her muscles are tight, she expresses delight when Grandma walks into the room.

Sunday afternoon Grandma lays Allie down on the floor and starts rubbing something on the soles of Allie's feet. I'm not in a super cheerful state with the lack of sleep and all so I think to myself, what the hell is she doing?, but since I'm a nice guy or at least trying to be I actually say, "That's interesting. What's that you're putting on her feet?"

"It's Mentol Chino like Vicks."

"On her feet?"

"I've heard of that, putting Vicks on feet rather than the chest," says the charming and beautiful Susan.

I'm still in a bad mood so I'm thinking what the hell are you two hens clucking about?, but I'm trying to be a nice guy so I keep my mouth shut.

So Allie has this Mentol Chino that Grandma Yolanda brings up from her native Ecuador on her feet (Allie has it on her feet - Grandma Yolanda doesn't bring it from Ecuador on her feet... never mind). The charming and beautiful Susan also applied some of the stuff to Allie's t-shirt and put another shirt on over the top of it.

Allie slept like a baby. She's been napping. The snot has dried up. She had an amazing day yesterday. She slept great again last night. We're all sleeping wonderfully. It's like I've clicked the heels of my ruby slippers and we're all back home in Kansas. I don't know if this Mentol Chino is FDA approved or not. Don't care. It's a miracle drug.

When Grandma Yolanda walks in the house, Allie's not the only one delighted to see her.

Check it out here: http://www.dyvenpro.com/ but you better know Spanish.

Rolling over with style

2009-01-29T06:33:00.001-08:00

It's been awhile since I've posted any tricks from Allie. This is a video of her rolling over. Since we've been in Florida, she's had huge improvement playing on her belly. She lifts her head up high and then thumps over onto her back. It's fun to watch...

Re-connecting with therapy

2009-01-26T18:08:00.001-08:00

Allie continues to amaze. Today we had intake appointments with our new occupational and physical therapists. At nine we met with Susan, our new O.T., at ten we had breakfast across the street at the International House of Pancakes, and then at eleven, we met with Joan, Allie's new P.T. All three appointments (IHOP included) were quite therapeutic.

Great first impressions were made all the way around. Allie made a good impression on them, the therapists impressed us, and IHOP with the un-ending supply of pancakes found a permanent place in my heart.

It's been a bit of an uphill battle getting into a new therapy routine. We were hoping to find therapists that could come to the house, but we've found that it's been good to get Allie out of the house, into the car, and up to Jupiter to this children's therapy facility. There was a steady stream of little kids coming and going and Allie was captivated. She did her best to be noticed and make new friends. She's much too social to keep at home.

We miss our Northern California therapy team, but we couldn't have asked for a better team than the one we've assembled here in South Florida. We are infinitely glad to be back home.

The Dedication of Allie Mondok

2009-01-22T07:53:00.001-08:00

Not too hip

2009-01-16T10:12:00.001-08:00

Today we took Allie in to see a new pediatric orthopedic doctor. It was an informative and sobering visit.

Last June, her doctor in Eureka shared the concern he had for Allie's hip development. Her left hip was growing 50% out of the socket and her right, 35% or so. Her muscular development is slower than her bone growth causing incredible disharmony and a mini tug-of-war in her little skeleton. Her joints are losing. To correct this, her doctor said that she would probably need surgery.

We, of course, wanted another opinion and that from a specialist. We got that second opinion today. Allie's new doc is a kind and articulate doctor who shares the same opinion. Allie will need surgery in the next six months to correct the abnormalities in her hips.

We are taking the next week to pray this through, but our initial gut feeling on this is that we're going to move forward with the surgery. Will you pray with us?

Allie's new-do

2009-01-06T06:54:00.001-08:00

We had one of those heart wrenching decisions to make around here. The kind of decisions that keep you awake at night, you know?

To cut or not to cut? That is the question.

We decided to cut; to say good-bye to some of those precious curls.

What do you think? If you like it, it was my idea. If you hate it, it was Grandma Yolanda's...

Christmas 2008

2008-12-27T03:16:00.001-08:00

Christmas 2008

Allie's Balcony

2008-12-18T13:10:00.001-08:00

In case you think your kids might not be safe when they come visit...

Allie's new digs

2008-12-16T16:31:00.001-08:00

Allie had an amazing trip across country. It couldn't have been done without Charity and Aaron and the charming and beautiful Susan doing the lion's share of the driving while I sat with Allie and gave her naps and sang along with her Veggie Tales video. We drove two vehicles 3300 miles in six days. What a trip.

Settling in has been a little difficult, however. Our expectations have been a little flip-flopped. We thought the trip was going to be rough and the settling in to a new place easy. But the opposite is what we've experienced.

Friday will be two weeks since we moved in. And Allie is starting to get into a routine. Please keep praying for us. We haven't been able to get her out of the house much. Our first attempt to put her in her stroller resulted in one of her infamous melt-downs. But I got her into it yesterday and walked her around the apartment complex. It was a rough start, but she settled into it as we kept rolling. Tomorrow she has her first appointment with a new doctor.

Having friends and family so close is awesome. Sometimes it feels like we were never gone and some times it feels like we were gone for ten years. Life is so much different now. Good different.

There Goes the Neighborhood

2008-12-08T15:22:00.001-08:00

Allie has a new visitor twice a day. Grandma Yolanda is not only Allie's biggest fan, but also a close neighbor. We made arrangements to move close to Grandma before we got back down here.

Yolanda is the best Grandma ever. She had Allie's bedroom all set up complete with a bedroom set and fantastic new additions to Allie's wardrobe hanging in the closet.

Thanks for giving us a great welcome, Grandma.

Baby Dedication

2008-12-02T03:18:00.001-08:00

Just a quick note: Allie will be dedicated to the Lord (Christened) on January 18, 2009, at Calvary Chapel Jupiter at the 11am service.

Allie's Latest Trick

2008-11-28T10:38:00.001-08:00