Monday, December 26, 2011

Christmas 2011

In attendance: Marsha, Barbara, David, Dawn, Doug, Holly, Ian, Brittany, Trenton, Emma, and Henry.

It was a great day in the Wilson household. Children all over the place with open boxes and wrapping paper everywhere. Family is the most important thing in life, without it's incomplete. Having our families together in one spot is the best. We then head to Rusty's house (my brother in-law) his wife Barbara's cooking is the best. I'm ready to send the wife over for lessons.


B and E opening presents

Nana and H

Tired Boy

E in her gift from Uncle Brian and family 

Christmas cheer 

E covered up in boxes/paper

Hangin out

Sunday, December 18, 2011

Type 1 Diabetes

My precious daughter Brittany suffers from this life long illness. Since this doesn't run in our family we had no idea about any of these symptoms. When we finally took her to the doctor her blood sugar level was 1170 (normal is 125) She's been an inspiration to us all, she's never used it as a crutch or excuse for anything. She's gotten involved in awareness and education. Camp Sweeney (www.campsweeney.org) has been a life changing experience for her and our family, she's been selected again for a CIT position this summer. PROUD!

These symptoms may be the first signs of type 1 diabetes, or may occur when the blood sugar is high:
Being very thirsty
Feeling hungry
Feeling tired or fatigued
Having blurry eyesight
Losing the feeling or feeling tingling in your feet
Losing weight without trying
Urinating more often

Saturday, December 17, 2011

Brittany- college application essay (coming soon)

I just requested her permission to post her essay. She said " Dad NO wait until I'm accepted and then you can post it anywhere you want". WOW! where'd the time go.

Infantile Spasms (West Syndrome) - SOLDIER

What are Infantile Spasms?

An infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs. Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age five, but may be replaced by other seizure types. Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, making it important to identify the underlying cause. In some children, no cause can be found.
Emma was diagnosed last year on 12/24/10. The first drug we tried (can't recall the name), she was unresponsive for 2 weeks. Then we started ACTH (a steroid), the results were immediate 6 days into the treatment. She's been seizure free ever since. How blessed and appreciative we are for these results. 
Every time I see children suffering from epilepsy or seizures, my heart goes out to them and their families. It's one of the toughest things I've been through so far in life. Being on the other side, I just want to offer my love and service to anyone that needs it. I have this deep appreciation to all that supported our family through this difficult time. 
A special thanks goes out to Dr. Mendelhoff (Pediatric and Adult congenital Heart surgery) and Dr. Majeed (clinical neurophysiology,pediatrics and pediatric neurology) just for being who they are. 
Here's a few pics showing the progression: 



  • starts off with EEG testing
  • steriod treatment, side effect is weight gain as you can tell 
  • recent haircut, learning and thriving seizure free
  • right after successful heart surgery, our little SOLDIER 
Much Respect,
The Wilson Family 

Wednesday, December 14, 2011

update finally.....

I wish I had the time to update the blog more. Emma and Henry are a handful and blogging doesn't sit very high on my list of priorities. Emma is pulling herself up on just about everything these days. She's learned to sign a few things , mostly around food and wanting more. Henry's a huge 5 month old 19 lbs. Here's a few pics to catch everyone up. Facebook gets the majority of pics due to my lovely wife constantly posting.



Makes you think.....

Saturday, August 27, 2011

Update - Emma Wilson

Just a quick shout out. Emma is growing like a weed and doing all kinds of new things.

Monday, May 16, 2011

Dallas Morning News Article- Front Page

East Dallas couple with Down syndrome discovers joys, challenges of marriage

Andy Jacobsohn/Staff Photographer
After a date night at a nearby pizza restaurant, Austin Davenport and Christi Hockel share a moment in their home in Dallas.
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On a cold, gray afternoon, a young woman sat inside a brick duplex in East Dallas, waiting. It was 5:30 p.m. Time for her husband to come home.
She walked into the kitchen and took two plastic bags out of the refrigerator, a hot dog in each. One read, “For Christi, for Monday.” The other read, “For Austin.”
Christi had learned many things during her first year of marriage. Not to sweep dirt under the clothes dryer. Not to put her husband’s suit pants in the wash.
No one had thought she would ever fully live on her own, much less be a bride.
A bus pulled up across the street, and Christi headed for the front porch. Austin, a dark-haired 33-year-old carrying a brown leather briefcase, stepped off.
Christi’s face brightened.
How they got there on that winter evening, with the microwave beeping and the dryer humming, is a story that spanned more than two decades and 2,000 miles, a story of two people who thought they would be alone forever, then met.
The story of Austin Davenport and Christi Hockel began with an abnormality in their genes, the presence of an extra 21st chromosome, or Down syndrome.
What that diagnosis meant to their parents was a million dreams that seemed suddenly lost. Kindergarten. Prom. Graduation. The grief almost swallowed them, and then it toughened them, and then it taught them to forsake the children they had longed for, and instead accept the ones they had.
If they hadn’t done that, if they hadn’t recast their dreams and rebuilt their plans, there never would have been a first kiss or a walk down the aisle.
It could have been a much sadder story.
Because they will tell you, that is how the story began. With heartbreak.
Austin’s mother, Nancy Davenport, waited in her hospital bed after giving birth to her third child one night in 1978. Her husband had gone home to look after their other two children.
Finally an elderly pediatrician arrived, looking grave. Her son, he said, appeared to have “mongoloid” features.
The first image that came into Nancy’s mind was a picture from a college biology textbook, of a grown man wearing a diaper.
The doctor left, and Nancy lay alone again, overtaken with shock and disbelief. As it neared midnight, she rang the nurse’s bell.
“I want to see my baby,” she demanded.
A nurse arrived carrying a tiny bundle and laid it before her. Nancy burst into tears.
Nancy, then 33, carried the newborn home, full of questions and fears about how she and her husband were going to raise a disabled child, along with two others, then 4 and 7 years old. She didn’t have the immediate solace of Internet chat rooms or the instant reach of Google searches. Instead, she hit the library and began making calls.
Within six months, Nancy was on a plane with Austin to Seattle , where researchers in the Experimental Education Unit at the University of Washington were trying to prove that babies with Down syndrome could learn far more than anyone had believed. They helped her teach him to crawl, then walk, then talk.
The average baby needs only marginal parental guidance to learn those basic tasks. But children with Down syndrome — with about half the IQ of the typical child — must be dragged through their early development. It is tedious, pain-staking work.
Nancy, a former high school English teacher, was a goal setter, a To Do-lister. And with every milestone Austin reached, her vision for him became more clear: that he would be as much as he was capable of. That he would, like her other two children, have his own life, long after she was gone.
And that is why she found herself at the public school nearly every day, asking teachers to accept Austin into their classrooms. She believed that if he were going to function in the “real” world, he needed to be around the “regular” kids.
Administrators in the Richardson Independent School District heard the hard stubbornness beneath her soft voice, and finally, by the time Austin was in the seventh grade, he was removed from special education courses and fully included, a rarity at the time.
She instructed teachers that, while he might lag academically, he should be expected to follow the rules — to sit in his desk, to raise his hand before speaking.
“I have concluded that people will put up with a lot — with someone’s inability to hear or walk or even talk — as long as they’re socially appropriate,” Nancy says. “That became my biggest goal for Austin, that he behave well.”
At home, when it was clear Austin was being defiant, she gave him two spanks with a wooden spoon, the same as her other two children.
“It sounds horrible,” she says. “But if you saw him today, you would say it worked.”
He was outgoing. Social. He learned to swing dance and sing on key and scored roles in the annual theater productions at Lake Highlands High, belting out the lines as the boxer’s manager in Guys and Dolls.
He graduated with his class, enrolled at Richland Community College, and then finally got a full-time job in the mailroom of a computer software company in East Dallas.
Then he wanted to live on his own.
Nancy and her husband bought a duplex off Mockingbird Lane. Austin would live on one side, and a schoolteacher from their church on the other, getting free rent in exchange for looking after Austin.
As Nancy prepared to leave him there for his first night, she braced for an emotional goodbye.
But Austin just smiled. “Goodbye, Mom,” he said, then shut the door and disappeared inside.
That night, despite her worries and fears, Nancy couldn’t deny a deep feeling of satisfaction.
At 23 years old, Austin had launched.
Austin’s life began to unfold in the blocks around his duplex. He rode the bus to work every morning. He sang in the church choir. He was soon on a first-name basis with the wait staff at IHOP. His days, Nancy believed, were fun and full.
What she hadn’t anticipated was the void of his evenings and weekends. Austin now spent much of his free time alone.
At night, he fixed dinner by himself, usually a quarter of a deli roast chicken and some microwaved carrots. Then the duplex would alight with the glow of the television set, as he settled on the couch for hours of Full House reruns or superhero movies.
As the days passed, he seemed to grow sadder, quieter. He couldn’t always find the words, but it was clear what he felt.
Lonely.
And just about then, just when his mother knew something had to change, he met Christi.
It was at the National Down Syndrome Congress in Minneapolis, in 2004.
Christi Hockel, then 25, was born in a small town outside San Francisco, the youngest of six children. She, like Austin, had accomplished more than anyone thought possible. She had danced as Clara in theNutcracker ballet and could recite lines from Shakespeare.
Among the hundreds of teens and young adults at the conference, the pair stood out. They were among the most social and independent. They were drawn to each other, their parents believed, because they could talk to each other.
At an evening dance, as the conference drew to an end, Austin walked toward her.
And this is how Christi remembers the rest:
“Something in his mind said, ‘I want to dance with this girl.’ He came over and asked me to dance. I said yes.
“Then I guess I made the first move. I kissed him. I kissed him that night … the first night we met.
“And I’ve loved him ever since.”
After the conference, they ran up a phone bill of hundreds of dollars. Then Austin flew to California. And Christi flew to Dallas.
Before long, they approached their parents to ask for something no one had dreamed possible.
They wanted to get married.
Austin’s mother was reluctant.
She still spent a significant amount of time looking after Austin. Did she want to take on responsibility for Christi, too?
And Christi’s parents didn’t know if their daughter was prepared to live on her own, away from the large network of family in California.
“Wait until you’re 30,” Austin’s mom, Nancy, told them.
They waited the three years. Then, after Austin’s 30th birthday, they came back and asked again.
One afternoon, Austin wept in the car.
“I’m lonely,” he told his mother. “I want Christi here.”
Christi wore a lace embroidered gown and carried red roses as she walked down the aisle. Before a crowd of 250, the couple pledged to spend the rest of their lives together.
Sitting in the first pews were their parents. Christi’s had been married for 49 years, Austin’s for 43. They knew how to make a marriage work, and they also knew how hard it can be. They were prepared to help this one, with all its complications, succeed.
Christi and Austin flew back to Dallas together in October 2009. Christi unpacked her bags in the duplex, which quickly filled with evidence that it was now her home, too: a Tinker Bell nightgown in the closet, a bottle of Lady Stetson perfume on the vanity.
Like many bachelors, Austin had some difficulty adjusting to the presence of his wife — and all her stuff — in his home. He sometimes got frustrated by the dozens of colored pencils she left scattered across the kitchen table, where she worked on her My Little Pony coloring books.
While Austin was at work one day, Christi walked to the Dollar Tree and bought several packages of glow-in-the-dark stars. She spent hours sticking them to the bedroom walls. When Austin returned from work, she guided him to the room, then turned off the lights. The room glowed.
“Look, honey,” she said with excitement.
But Austin frowned. He didn’t like it.
To help guide them through the conflicts, Austin’s mother found a young married couple, a seminary student and her husband, to live on the other side of the duplex. They took Austin and Christi grocery shopping and kept track of their whereabouts. In exchange, they received discounted rent.
Emergencies did arise, such as the time Christi overfilled the coffee pot, sending water streaming into the oven as she baked a meatloaf. It tripped the circuit breaker and caused an explosion of sparks, a terrifying reminder of all the things that could go wrong.
Christi also had trouble adjusting to the freedom that came without the daily supervision of her mother. Right away, she gained 15 pounds, a dangerous health risk because of a heart condition.
“It’s scary, having her so far away,” says her mother, Judie. “I see where her weaknesses are.”
Christi has her driver’s license and can speak conversational Spanish, but has the dangerous habit of looking down when she crosses the street.
They work on those skills when Christi flies home to California every month to spend time with her family. After a day or two, she starts talking about Austin, and how much she misses him.
Before the couple met, Christi’s parents had thought her life was full, busy with hospital volunteer work and her large family.
But now, when she retreats to the apartment above her parents’ garage, they see the loneliness in the life she led before Austin.
That winter evening in Dallas, as Austin walked up the steps, Christi stepped forward to meet him.
“Hi, honey,” she said, her arms circling his waist.
Inside, Austin took off his tie, and Christi carried the hot dogs to the table. They began to eat and talked about their plans for the evening — grocery shopping with the neighbors, then finishing Salt , the Angelina Jolie spy thriller.
Later, Christi put on her nightgown, and Austin wore his flannel pajama pants. Then they climbed into bed and said goodnight.
And there, beneath the glow-in-the-dark stars, they fell asleep together.
Jamie Thompson is a Dallas freelance writer. She can be reached at Jamie.Thompson@yahoo.com.

Good News!

It's been a while since we've last updated everyone. I'm making an effort to blog at least once a week. Scouts honor!

To give everyone an update on EG things have been great lately. She's been seizure free since January 16th. We are off all meds and she got her swagger back. Thank you GOD.

We just had her first birthday party, which was a huge success. We had about 50 family and friends in our 3 bedroom house, crowded is an understatement. Thanks to everyone for the generous gifts.

Much Respect,
The Wilson's

Saturday, January 29, 2011

Emma Bear Update 2

WHAT A DIFFERENCE A WEEK MAKES! PRAISE GOD!
To all of you who have been diligent in prayer, please take a moment and thank HIM from the bottom of your heart for a miraculous week!  After I updated you all last Saturday Emma smiled for us for the first time in weeks!  We were so excited!  First we got a smile on her changing table and we had another one later that night.  On Sunday it was a smile-fest!  I am sure this is because it had been over 24 hours since her last spasm freeing her mind up a bit for some happiness!  Doug and I saw smiles all day long and posted what we could get a picture of.  Then Sunday night came with a spasm.  A 12 minute long seizure which broke our hearts.

Monday started Day 8 AND WE HAVEN'T HAD A SEIZURE SINCE! What a week! Emma is still waking up in the night (probably because she is ravenous for food) but I can usually get her back to bed within an hour.  We still have a fussy baby but nothing like the week before (or maybe we are getting more used to it:). Nevertheless, we have a baby that smiles in the morning when you first see her face and continues to smile throughout the day.  She follows us again as we walk about, she gets excited, she plays, rolls over and gets frustrated that she isn't mobile yet.  She is getting her personality back! She isn't playing with her toys as much as she used to just yet but she is working on it.

So where do we go from here?  Well, we take her to the hospital next week for a follow-up EEG to see how her brain activity is doing.  We are aiming for a normal EEG with no hypsarrhythmia (chaotic brain waves).  Please keep her in your prayers.  We also have to be careful as we wean her off of the steroid to make sure the spasms don't come back.  We are by no means in the clear but we are overjoyed at God's Love for us! I am certain we are headed in the right direction.  I joined yahoo groups IS board and there are so many children who battle these spasms relentlessly.  How blessed are we that the ACTH treatment is working.

Thank you again to all of you for all your support.  Whether you brought dinner this week, sent emails and posts or prayed diligently for our family, we love you and thank you from the bottom of our hearts.  We know that we have powerful prayer warriors on our side standing with us as we walk this difficult journey.  

I thank God that I know Him better and praise Him for choosing Doug and I to watch over this angel of His.  She is amazing!

Much Love,
The Wilson's
Doug, Dawn, Brittany, Emma Grace and baby Henry!:)

Sunday, January 23, 2011

Update - Emma Bear

Hello All who are in prayer and thoughts with us as we faithfully await the day Emma Grace's spasms will stop, her EEG will be normal and we can praise GOD for another miracle when it comes to our little angel.  This is day 6 of the treatment and boy has this week been tough for us all.  It started with us going to pick up the medicine from the doctor on Monday.  Doug chose to be the one to administer the shot, which is good since I'm a big baby when it comes to these things.  The nurse showed Doug how to do it and requested he come back and show her how he does it the next day.  I was a bit nervous since they told us most families choose to admit their infants into the hospital for 24 to 48 hours while they learn how to administer this drug, but Doug assured me he could do it.  I definitely shouldn't doubt my husband for he has shown an unwavering ability to hold down the fort and get things done in the Wilson house.  I picked real good!:) He is a STUD:)

Emma had at least two spasms a day for the next few days with one of them being the longest seizure yet at over 16 minutes long.  Doug, Meme and I just hold her while she has them and love on her the best we can.  I pray the entire time and often read scripture to her that focuses on healing and God's amazing love for us knowing that he will perform a miracle so we can glorify him.  As the days have passed Emma has become extremely agitated and fusses all day long.  The only time she doesn't fuss is when she is sleeping.  At night it gets worse turning into a cry.  Day 3 we started to see her having trouble with her sleeping patterns at night. She seems to sleep for 3 to 4 hours but then wakes up for 2 to 3 hours in the middle of the night.   I am praying this will get better.  Doug and I take turns waking up with her but as many you know I am in my second trimester and just started a new job.  To say the least it has been tough.

Day 4 Emma was seizure free, Praise God!  Unfortunately we saw seizure activity yesterday but only once.  We have had a seizure free day before (but only once) so we remain in the "waiting room" praying faithfully.  I do pray for God's will but I also get specific and pray for Emma Grace to be healed, for her to be comfortable and peaceful.  For God to take the seizures from her so she can smile again, so she can develop.  I can't wait to see my baby's smile. I think I miss that the most.  It has been over a week since we have had any smiles and before that they were few and far between. It is absolutely heartbreaking.  So far today we have been seizure free.  The good news is the seizures seem to becoming less and less and the one yesterday wasn't extremely long comparatively speaking.  

So, I write this to all of you who follow us on here and pray for us out there.  We can't thank you enough.  Please continue to stay vigilant in prayer.  Also please know that I am so sorry for not responding to everyone's messages on facebook.  Many have sent emails and cards.  Just know that I appreciate them more than you know. I would love to update you all a week from now with even better news. God willing, I will:). 

Much Love,
The Wilson's