Thankful Every Single Day

Well, we all know how much I really enjoy spending time with Miss Hailey and Thanksgiving certainly is a perfect time to reflect on all of the blessings we have in our lives. I would be lying if I said that it didn’t bother me to watch her struggle as she attempted to eat the whipped cream off of the spatula from the pudding pie that she and Natalie made for dessert. Of course I wish that such a simple task could be accomplished without such difficulty, but for Hailey, it will always be difficult. But we will never forget that the mere fact that she is here today is truly a blessing.

Life certainly has a way of throwing you curve balls, but it is how you deal with them that defines your character. I am so proud of the way Tommy and Natalie have grown both in maturity and character since Hailey’s birth 4 years ago. As young parents they have learned more about life lessons, health issues and therapy sessions, than most of us will ever learn in a lifetime.They have learned more than they should ever have to know. When you have a child with a disability it is important to be able to look past the medical issues, past the limitations and all of the challenges that someone like Hailey faces every single day.They even have to look past the ignorance of others. Instead the importance lies in seeing the beautiful and courageous little girl that Hailey is. After all, that is what defines her anyway... not her disability.

For others it may seem a bit difficult to see their blessings, especially in this challenging economy, some have lost their jobs, others their car payments or the luxury of enjoying a night out to dinner. To my family our blessings are quite clear. Hailey is our blessing. We see things a lot more clear than in years past. We celebrate every achievement, no matter how small. Our priorities have shifted and our lives have completely changed, because when someone that you love has Cerebral Palsy, (or any disability) it’s as if the entire family has Cerebral Palsy, and you know what, we wouldn’t have it any other way, because we will never let Hailey go through this alone. We count her as our number one blessing, not only on Thanksgiving, but every single day.

Yes, Let's.

Lego Social Skills Club...

Many of our children struggle with social skills, initiating and maintaining social conversations, and developing friendships among peers their own age.

I came across this short video and thought it might be an idea that would be helpful to families. Perhaps it could be adapted to fit your child and their needs and interests (Legos, Star Wars, Polly Pockets, etc).

Rollin' With Zach

Official Trailer: Rollin' With Zach

Zach Anner is obsessed with travel. In Rollin' With Zach, he takes an authentic and often humorous approach to seeing the country, as he hosts his own half-hour travel series. Zach may have cerebral palsy, but that's never stopped him! In every episode, Zach explores a new city and conquers his "top five" list for the destination.



In season one of Rollin' With Zach, he travels from coast to coast, visiting Los Angeles, Chicago, New York, San Francisco, Las Vegas and Portland. Each episode is filled with humor and emotion, as Zach meets new people, indulges in his favorite treats, and attempts new and exciting experiences he never thought possible! From surfing to sailing, rock climbing to water-skiing, he challenges himself to try the unexpected, and at times - the seemingly impossible. And when things don't go as planned, Zach embraces the problem with his sharp sense of humor and a positive attitude, because travel is an adventure and sometimes you just have to "roll with it!"

Rollin' with Zach will premiere with back-to-back episodes beginning Monday, December 12 from 8:00 - 9:00 p.m. ET/PT.

Unlock the Doors of Heaven

No Limitations

THANK YOU to Nicole for sharing this link with us.

You can listen to the song or download it by clicking here.


Within the womb I formed you
I fashioned and made each part
I thought of your fingers, your hands and your feet
Your mouth, your lungs, your heart
Though you might think that you’re different
I made you the way that you are
So you could discover the God who made you
And find out all I am

And though you might think you have limitations
There are no limits with me
When you turn your eyes to my salvation
Finally you will see



In Me, you have all that you need
In Me, you have all that you need
In Me, you have all that you’ll ever need.

And I’ve heard each prayer that you’ve called out
“Why did you make me this way?”
You may not completely understand now
But there will be a day
When I make everything known to you
And what you don’t now understand
You will see that I”m wise and I’m mighty and good
Just like all my plans
And if you trust in the work of my Son
One day you will see
That I’ve made you the way you are
To draw your heart to me
To draw your heart to me.

Friends

White Stripes "We're Going To Be Friends"
Produced by D-PAN, the Deaf Professional Arts Network
www.d-pan.org

2012 Prep

I know, I know, who's thinking about 2012 yet?

Well, if you are, then this printable calendar from About.com

with love notes for special needs parents is for you!

Burdens Into Blessings

Blessed

It's the first two lines of this song that touch me the most.
Welcoming and being grateful in ALL circumstances...
THAT is the key!



I welcome the sun,
the clouds and rain,
the wind that sweeps the sky clean
and lets the sun shine again.
this is the most magnificent life has ever been.
here is heaven and earth
and the brilliant sky in between.



blessed is this life
and I'm gonna celebrate being alive.
blessed is this life
and I'm gonna celebrate being alive

I dwell in the darkness
I let in the light
I sleep in the afternoon
and become the noise in the night
I trespass in temptation
suffered in sacrifice
but I awake each day with a new sunrise

blessed is this life, oh
and I'm gonna celebrate being alive
blessed is this life, oh
and I'm gonna celebrate being alive

Thanksgiving Fun Ideas

There are a BAZILLION cute turkey & Thanksgiving ideas, but I picked out just a few of my favs to share with you all! I really cannot believe it's almost Thanksgiving. Where oh where does the time go!?!?!! Images linked to sources.

BElieve in YOUrself!

"It is easier to build strong children
than to repair broken men."
~Frederick Douglas

I think one of the most, if not THE most, important lesson you'll ever teach a child is self-confidence. The activities, people, careers, entertainment, and almost everything we fill our life with is a reflection of how we feel about ourselves. Therefore, it is a gift to your child to teach them to feel PROUD of who they are! To be comfortable in their own skin! To be authentic!

To me, this picture from Cassie of Beyond Measure says it all. Her son, Caleb, ASKED his mom to take this picture. It screams of a young man who knows who he is and is proud of it! I wish everyone, with special needs or not, felt this happy to be who they are! (Thanks for letting me share, Cassie!)




I've compiled a board on Pinterest (kidz ~ building self esteem) with quotes & thoughts about building self esteem. Here are just a few, but check all of them out when you have a chance! (Images linked to sources.)





What do you do to build your child's self-esteem?

Peyton's Story

Peyton’s story begins long before she was born when her father, Travis, and I met in high school. We were high school sweethearts but before graduating went our separate ways. I went on to marry another for almost 8 years. He moved out of the state but remained single. Fifteen year passed before I contacted him. A year later I moved to California to be with him. Since both of our families were in Utah as was my job we were on our own without a safety net.

We knew we wanted children and because of our age, decided to get started immediately. We were thrilled to discover I was pregnant within just a few weeks of trying but just days later and only three days before our wedding – I suffered a miscarriage. But our hopes soared quickly when less than a month later we had another positive pregnancy test. We felt certain that it would be a girl. I remember hearing of the show Peyton Place as a child and loved the name. So just days after discovering the pregnancy we had named our baby to be Peyton mere weeks before Peyton Manning won the Super Bowl!

The pregnancy seemed to progress well until about the 25th week when I went into preterm labor. After some rest and fluids the contractions stopped but it was our first hint this pregnancy could be at risk. At about 32 weeks I surprised Travis with a 3D ultrasound. The technician had previously worked in a high risk maternal fetal group and was seeing some things that concerned her. She recommended we have the hospital perform another ultrasound. Within days of that ultrasound I got a call from my obstetrician recommending we seek yet another ultrasound at the high risk maternal fetal group in the area. After two ultrasounds that were concerning we weren’t surprised that after the third ultrasound was completed the geneticist wanted to meet with us. Peyton was showing signs of a syndrome but at the time they didn’t know which it was. She had micrognathia as well as several measurements that were smaller than average. Just weeks out from delivery the geneticist let us know that there was nothing more to be done and we would have to wait until after she was born to learn more.

On my hospital tour I had already discovered that it did not have the highest level NICU and with a potential airway issue I consulted my obstetrician about potentially transferring my case to another hospital but she did not seem concerned. I also recommended a scheduled c section to ensure all the necessary specialists were in place but also due to my mother’s history of barely making it to the hospital for delivery. Again, I was rebuffed so I hunkered down to wait for labor to begin. We had a few weeks to contemplate the news that Peyton may have some medical issues, but without any knowledge of the particular syndrome there was no ability to prepare for what was to come.

I was four days past due when my labor pains started. When I first realized they were contractions they were only 3 minutes apart. When I called my obstetrician she didn’t seem overly concerned since they weren’t very painful and suggested I stay home until they worsened. Within minutes of hanging up the phone with her they intensified and by the time we made it to the hospital about 15 minutes later there was no mistaking that I was in labor. I was only dilated to a one, though so they initially considered sending me home but just a few minutes after that assessment Peyton’s heart rate dropped. The room filled with people and after having me change positions her numbers returned to a healthy level. The scare coupled with my rapidly progressing labor, they decided to go ahead and put me in a room but just moments after getting me there Peyton’s heart rate dropped a second time and they were having a difficult time getting it back up. A quick decision was made to proceed to the operating room for an emergency c-section.

Initially I was focused on getting the epidural and as the painful haze was replaced by numbness I realized she was out but it was not like any baby show I had ever seen. They immediately moved her behind where my husband sat and I caught a glimpse of thick, black hair but no one said a word. I looked at my husband and above the mask saw my fear reflected in his own eyes when I kept asking why she wasn’t crying. He just shook his head because he didn’t have any answers either. Within moments he was hustled out of the operating room and I don’t remember anything else until I woke up in recovery later.

I am not sure how long I was out, but Travis had been taken to a small waiting room. During that time he made some panicked calls to family back in Utah. Eventually, a nurse brought him back to the NICU to see Peyton. Early on we were told that Peyton was in respiratory distress and due to her abnormally small jaw her airway was tiny. After reading her medical records, I later learned that the umbilical cord was wrapped around her neck twice and she had aspirated meconium, further compromising her ability to breathe. In that first hour, they tried twice to intubate her and were not able to so they had an ambulance on the way to pick her up and transport her to UC Davis Medical Center because they had the highest level NICU in the area. Before the transport team took her away, they wheeled her incubator to my room so I had a chance to see her. Travis had a few moments to check on me before he followed her to the hospital. My sister and brother were on a plane within hours of my husband’s call and they helped to keep me entertained while he was monitoring Peyton’s condition. Later that evening he returned to the hospital I was at and for the first and virtually only time, he broke down. I must still have been in shock because as he was crying I felt completely unemotional. I was so distant that my sister expressed concern to her husband on the phone that night. It wasn’t until the next morning when I called the NICU to check on Peyton’s status that it all came crashing down. When the NICU nurse asked me who I was I sobbed as I said, “I’m her mother”.

That first day, Travis had to make a decision to allow a breathing tube and a PICC line. I was released on her third day of life and had one opportunity to see her before we had to make the difficult decision to allow the doctor’s to perform a tracheostomy. I didn’t realize it at the time but I was suffering from a spinal fluid leak. Despite going in for a blood patch on the fourth day of her life, it didn’t work and it took a week before I could stand without agonizing headaches. But during that week, I refused to let it stop me from seeing her and after a 30 minute drive to the hospital each way, I would walk several football fields to get from the parking lot to her bedside with my head throbbing and recovering from the c section. It was my first taste of what it meant to ignore my needs in lieu of hers.

Within the first week of her life, the geneticist at UC Davis informed us that they believed Peyton had Nager Syndrome. It was very rare – at the time there were less than 100 diagnosed cases. There was no genetic test so the diagnosis was made on her clinical symptoms: micrognathia, abnormal palate, overlapping toes, fused bones at the elbow, shortened forearms and her craniofacial differences. We would later learn she had no ear canals and had severe hearing loss in both ears and also had aortic valve disease. Peyton would spend six weeks in the NICU and during that time she would have a feeding tube placed. When she finally came home our house was full of machines and medical supplies. We were so fortunate to have nursing because without any family or friends close we had a lot to learn.



In May of 2010, we moved to Utah to be closer to our families and we are currently living in Sandy. Peyton is now four and attending preschool.

She is still trached and still has a feeding tube. There is probably no chance of either being removed in the next several years. In the last year she was also diagnosed with asthma with her trigger being cold & flu. But despite nine upper respiratory infections over five months last year we avoided any hospitalizations. She is healthy and her airway is stable, in fact she can spend most of the day with a cap over her trach tube. She has had three hand surgeries and two jaw distractions and will have plenty more surgeries in her future.

Peyton is a firecracker with a very engaging, dynamic personality. She is outgoing and social despite her speech difficulties.

With the recent addition of an iPad with a communication app we are hoping she will have the ability to communicate more easily with others. Because there is no data on the likelihood of having another child with the syndrome, we have chosen not to have any additional children, but Peyton is kept company by her two furry brothers – Henry and Chili. She also has two sides of her family that spoil her rotten and embrace everything about her – we are so fortunate in that regard.

A few weeks before her birth, I started a blog and it became a source for family and friends to follow her progress. Years and eight hard bound books later, it is a baby book beyond anything I could have imagined. Not only does it track her medical progress but it gives a peek into her world – the good, the bad and the ugly.

We derive support from many sources – tracheostomy.com, the Nager and Miller Foundation, Hope Kids, and the blogs of other special needs parents and our family and friends. Finding the Kidz website is just one more place to feel acceptance and understanding and we are excited to be a part of it!

By Peyton's mom, Tracy. You can read more about their journey on their blog, Peyton's Place.

Diagnosis

If your child has been diagnosed with Cerebral Palsy, then this video is worth watching.

Diaper Solutions

When Chloe needs anything that I can't find at Target or Costco, I go a little haywire.... what am I going to do!?!? Well, little missy is growing out of the typical-sized diapers, so I've asked around for incontinence solutions and gotten lots of great tips!

These websites have been highly recommended...

Home Delivery Incontinence Supplies

Activ Style Incontinence Supplies

You guessed it, Amazon.com.

These are the brands that have been most highly recommended. Tena for daytime and the others for nighttime....

Most sites will send samples so you can figure out what works best for your little one. You can also check with your county/state departments to see if these types of supplies are provided. Also, you can ask your doctor to write a prescription for incontinence supplies to try to get them covered through your insurance company. Just make sure the correct diagnosis/ICD-9 is used for incontinence.

Please leave a comment if you have any other tips or tricks up your sleeve when it comes to diaper solutions!

Fifth and Goal

He was 18 months old when they told us he would never walk - or talk - or have any civilized quality of life. They wanted to put a permanent feeding tube in him and put him in a half-way home. They told us we would not want to be burdened with raising a child with so many challenges. They patted us on the back and told us it would take a Billion dollars to “fix” him. They were the most distinguished hospital in the World – but he was our Son - and we wanted nothing to do with their advice.

He never got that feeding tube. He doesn’t take medications. His name is Carter, and he is our 8 year old son. Carter was born with a rare neuromuscular disorder called Alternating Hemiplegia of Childhood. There are about 340 cases in the World. It is a paralysis disorder, with episodes brought on by a wide array of triggers. Barometric pressure change and severe temperature swings account for many of his episodes. Over-stimulation or surprises from any source also cause paralysis. Through most of his life, Carter has faced these episodes nearly 75% of the time. Today, in the stable Texas climate – Carter deals with dramatically fewer episodes. There isn't a day that goes by that Carter isn’t affected by this disorder.
So here goes the story:

Carter’s younger brother, Spencer, plays flag football with the Lake Travis Youth Association. When the league struggled to put together enough coaches to handle the large number of kids, I reluctantly stepped up to fill a pair of coaching shoes. I had never coached football. As it turns out, teaching 5 and 6 year olds to play football could be better defined as herding ants.

This past Saturday was just another rewarding (um, frustrating) day on the field. My players were not listening or paying attention – and the other team was taking advantage. We were on the receiving end of a pretty good beating, but we managed to keep the game close. We were down by one touchdown with little time left in the game – and we were “lucky enough” to get the ball back. Unfortunately, we went through all four downs with no success. Our kids dropped the ball, ran the wrong direction, and got tackled behind the line on all four downs. We did all the wrong things and turned the ball over on downs.

It felt like five minutes had passed while the opposing team tried to get their offensive players out of the huddle. I was already irritated and could not understand how such a fast-paced game, with running time, all of the sudden felt like we were in a rain delay.

I caught some movement from our sideline – and looked over to find Coach Bill walking on the field with Carter at his side. Carter might be the biggest Lake Travis football fan in history - but he is not supposed to be on the field. He LOVES being at ALL the football games – especially Spencer’s. As they walked closer, Coach Bill said “Put Carter in at running back for this play.” “He can’t,” I said. “We turned the ball over on downs – and besides – he’s not even on the team.” “Just put him in and run the play,” Bill said. Getting more agitated, I said “Look, Bill – It’s not our ball and he doesn’t know what to do.” “Just listen to me and do this,” he said.

I turned to the head referee and said “hey stripes, am I missing something? Did we not just turn the ball over on downs?” He walked over, got eyeball to eyeball with me, and in a stern voice said “yes you did – but number 10 here is ready to get his first touchdown – are you okay with that?” Side note: Carter is a regular at all the games and practices, so he wears a “left-over” #10 jersey to all the LT games.

So with everyone on the field aware of what was developing - except for me and head coach Jen – we were given a “fifth down” and a dream come true. With Spencer at quarterback and Carter set up in I-formation, the sun stood still. For thirty seconds. And Carter ran 40 yards for a touchdown while everyone cheered for him. You would have thought we had just won the Super Bowl. I had never heard cheering like this. It was deafening. Carter had never shown so much emotion. He was so proud – and so were Sara and I. The head coach from the opposing team put Carter up on his shoulders and marched him around the field. Everyone rushed out on the field - and there wasn’t a dry eye to be found.



This is Carter’s story. One that beats adversity. One that overcomes challenges. One that opens hearts and changes lives. Carter is a gift from God and I treasure him with all my heart.

This is a beautiful story and I hope I am giving it justice. I still don’t know who made this happen – but everyone was on board. The opposing team, the parents, players, coaches and even the referees. In a heated moment with the game on the line – the Sun Stood Still – to give God the glory and give Carter a moment he WILL NEVER FORGET. It was a priceless moment. One of those moments you read about or watch on youtube – but never get to experience in the flesh.

I am honored to cast my deepest heart-felt appreciation to everyone at the field on Saturday. To the Bulverde (San Antonio) flag football team for lifting Carter up high – for one moment that will last a lifetime. To the coaches I work with – for making this moment so special and honoring Carter with a medal for his efforts. To the head referee, who with tears in his eyes and a choked-up voice, issued Carter the “official game coin” and suggested that we frame it and remember this day forever. To the parents and fans at the game – your cheering will ring in our heads for decades. To all of you that have helped with Carter - prayed for him - and gave us the hope and courage to fight for his future. Today, we lift all of you up – because you all deserve it.

This is a great story and I will cherish it forever… Whatever battles you may be fighting today – fight them with courage – and give all the glory to God. He has a plan for your life – even when it seems to be spinning out of control. It might require a “Fifth Down,” but He will be there for you – just give Him the reigns… Only He can make the Sun Stand Still.