Thursday, December 31, 2009

Christmas Posts

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

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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Thursday, December 10, 2009

Holiday shopping for special needs children

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

Saturday, December 05, 2009

Rolling with Vets

IMG_1557 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.

IMG_1553The 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.

IMG_1559Allie'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.

Thursday, November 26, 2009

Taking steps

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

Wednesday, November 25, 2009

Thanksgiving at The Arc

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.

IMG_1460 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.

IMG_1487 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.

Wednesday, November 11, 2009

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.

imageIf 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!

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 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.

Friday, November 06, 2009

A Case of Man Bites Dog

IMG_1442 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?


Wednesday, November 04, 2009


imageAllie'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.

Friday, October 30, 2009

First Long Ride

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.

Thursday, October 22, 2009

Where to get Your Pumpkin

pumpkin fundraiser

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.

Wednesday, October 21, 2009

School Picture

10-21-2009 02;31;46PM

Allie Mondok
October 2009
Three years old
First school picture

Tuesday, October 13, 2009

Huge Milestone 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.

Saturday, October 10, 2009

Allie Swinging at School

allie and lana

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

allie on the swing

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

allie swing

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.

allie, lana

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.

Saturday, October 03, 2009


image 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.

image 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.

image Just kidding. But she had fun.

Wednesday, September 23, 2009

Red Light, Green Light

image 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.

Saturday, September 19, 2009

Friday, September 18, 2009

A Full Week of School

image 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.

Monday, September 14, 2009

Allie in the Park Video

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

Sunday, September 13, 2009

Arc in the Park

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.

Thursday, September 03, 2009

New Routine

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.


imageThis 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.

Monday, August 24, 2009

Sent Home Sick

sick 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.

Friday, August 21, 2009

Emotional Trauma

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.

Wednesday, July 15, 2009

Corner Chair

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

Monday, July 13, 2009

Cute and Fuzzy

smDSC_0047 copy

Allie's cute and the bunny is fuzzy.

Friday, July 10, 2009

Allie and Emey

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

Friday, June 26, 2009

Birthday Song

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.

Friday, June 19, 2009

Workin' It Out

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.


Sunday, June 14, 2009

Stand and Deliver

IMG_1246 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.


Saturday, June 06, 2009

Grandma Makes Guacamole

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.


Wednesday, June 03, 2009

Allie's Legs

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.

Saturday, May 16, 2009

Next Phase

IMG_1212 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 IMG_1214and 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.



Sunday, May 10, 2009

Cast Away

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.

Thursday, May 07, 2009

Phase Two

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.

Tuesday, May 05, 2009

The Morning Project

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.

Monday, May 04, 2009


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.


Tuesday, April 21, 2009

Back and Forth

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.

Thursday, April 09, 2009

Amazingly Resilient


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.IMG_1106

Above is Allie in her new wagon from Grandpa Jim. 

This is from this morning: