Wednesday, September 10, 2014

Apple Does it Again

It is no secret that we are an Apple family. In 2007 the world changed when the iPhone was announced. People may think that it is kind of a cliche' statement, but for people with disabilities a whole new world was opened up.


From Autism to blindness, this company has reached into their lives and simplified them in one way or another. When they opened the app store to developers without having the grueling approval process, the options were endless and affordable. 

For us, Tyler has limited movement in his arms, fingers and legs. So playing video games is not happening. Neither is writing. So since the iPad came out, their are plenty of apps for handicapped children and other accessories, make it so that Tyler can write and trace using his finger and use his fine motor skills to do what he can't do otherwise. 

Tyler does have games, I would be lying if I said it was strictly for educational purposes. He finds apps on his own. He works to earn money to buy apps if I refuse to purchase them. Sometimes it takes him weeks. Sometimes I just say no. But he finds what he wants. 


Today the new Apple watch was announced. I rolled my eyes and thought DUMB! Then I listened to a brief ( very brief) stint of what it had to offer on 2 or 3 features. But what stole my heart. The maps! 

So get this, Google Maps will work on this watch. It will give you walking directions to where ever you want to go. Since Google maps is on the ground and has photos it can tell you when you need to turn left or right etc. But the BIGGEST: They are 2 different types of vibration. Do you have ANY idea what that means????!!!!!!!!!
A legally blind boy/man/teen/executive has made it to the big apple for a job interview, a vacation or whatever. Has the desire to walk around the city. This person has very sense going nuts with sounds, smells and visually bombarded by times square. So he puts in that he wants to go to Central park. He gets a vibration on his arm where his watch is telling him what direction to take off too. It uses 2 different vibrations. One for left and a different for left!! One last thing on his mind where he can now use his cane and other adaptive pieces of life to LIVE!!! 

I guess the answer for why I like Apple.....

It allows my son to live. To live like any other little boy. To love games on the iPad, ( since he can't play them on a gaming console) to loving books on the kindle because they enlarge as he reads the words. To Parking Mobility apps where they tell us where the closest parking spot is to events. AND gives you a way to turn in those illegal parked. 
I have high hopes that apple will make even more devices that will open the world up even more for our special kids. Maybe next... a computer driven car! 

Friday, September 5, 2014

People are CRUEL

When Tyler was little and had to have his second shunt revision in six months, we didn't have time to coordinate with his doctor to shave his head completely. We tried all the other times to beg to have it shaven to avoid the insane drama that came with his hair cut.

In the hospital we were in the ICU. He was doing so well the next morning that we took a walk to get out of the 4 walls we were trapped in. We went to the cafeteria and we went to get him some pizza. We went into the cafeteria and EVERYONE stared at us.

Literally everyone.

When I would look them in the eyes they would quickly avert their eyes and look away, making it even more obvious that they were staring.  I don't blame kids for staring. I do find it sad that the majority of the staring people were adults. Kids, well they don't know any better and they generally ask what happened.


Do I blame people for staring? NO, I don't. It looks strange, and even a little scary. But he was a little boy. It wasn't his fault and we were in a children's hospital so let's not stare at the kiddo's with bald heads because of cancer, or the kiddo with a growth on his face. We know it looks bad. Trust us. We don't like to look at it either. But don't stare.

Recently in the news there have been 2 very shocking events that have transpired. The first one is about a Seattle couple who were in the mall sharing a tablet and having a conversation about a book. The couple also happened to have cerebral palsy and were in wheel chairs. Both of them.

As the event transpired, the women saw the two men hanging around and said she started to feel uncomfortable. She said she didn't want to engage them so she just let them be. One man started to leave and the other man came towards them and snatched the tablet away from the women.

The women has taken the high road and forgiven the men who did it, but she thinks that if the person is going to target them, they are willing to target anyone. The video has gone viral and even CNN has picked up the news cast.

Bringing us to the next horrific cruelty this week. The ALS challenge was all over the place last week. Dumping ice water on their head for awareness of a terrible neurological condition. While the majority of the people who participated were doing it in a smart fashion, we can't help but be shocked by the grandfather who poured freezing cold water on baby. But the even more horrific one was the high school students targeted a 15 year old boy who happens to have Autism was surprised by not ice water, but urine, feces and other bodily fluids. The video was filmed on the boys phone. It was posted on Instagram.

The family is hoping that the public can share their story in order to raise awareness for the harmful effects of bullying and especially the effects of bullying on a specific, more vulnerable group of people.

Stares and whispers and points and teasing are nothing compared to the harm done to the last boy. But the pain in the mother's voice and the sadness she was feeling knowing that people didn't love her son like she did, was just as bad as the bullying itself.

Targeting someone who can't chase after or do anything to defend themselves, and committing a crime, is cruel.

Staring, whispering and not including a child is cruel. It hurts.

 In 2 of the 3 instances, the moms were probably hurt more than the children, but the effects of bullying are felt, not only as the person who was bullied but the parent as well.

PLEASE... Stop the cruelty. If you see someone who is being mean to a child, especially a child with a disability, make it stop. If you have a child who is close in age to a child who has a disability, or if they attend the same church or are in the neighborhood, include them. Make the cycle of bullying and abuse stop.

Thursday, September 4, 2014

It's a sad fact ... but a fact

Tyler is turning 9. This kid LOVES birthday's. When it hit Sept.1st he got all excited that it was his month and that we would be having this awesome party at his favorite places with balloons and party hats etc. I didn't have the heart that it would BREAK my heart to do that to myself this year. But I didn't tell him no.

So, I went to 800 of my closest Facebook peeps and asked them to share a photo. This photo:
You see, Tyler has been invited to one persons birthday party in his whole 9 years. Every party we throw for him we invite his entire special needs class and hire extra respite and state workers to help us with any extra need that we could have. And yet no one shows up. No one even RSVP's. So last year, we rented out a lane at Flip side and waited to see of the 11 kids in his class, who was coming. No one showed up. It was me, his respite, his dad and his brother. I was heartbroken. 

But in true Tyler fashion he said that is ok. We can still have a good time. But I was broken. 

This year we have been trying to figure out what to do and where to have a party, Ty is not satisfied with just something here with Cake and us. He wants to go to the trampoline place, or the bouncy house place or the indoor play place. He wants to invite all his friends. But what mom dares tell him that there is no one that will come. 

As hard as it is, we have but few friends for a kiddo like Tyler. He likes things that a normal 4-6 year old would like. Not what a 8 year old would like. He is socially not where he should be. So how do you tell your innocent kiddo, that it isn't going to happen.

Well I can't. So, please download the photo and share his story. Send them back here to see what he is all about. Lets give him the "Surprise party" he deserves to have! 

The address is incorrect on the flyer. Because of my school deadline I don't have time to fix it, but his address is 18902 e kingbird. 

Tuesday, September 2, 2014

Hydrocephalus Facts

  • Approximately 1 Million people have Hydrocephalus in the US. 

  • There are believed to be 180 different causes.

  • There is no CURE and very LITTLE research. The NIH spends 60 Cents per person with hydrocephalus per year compared to $300 per person per year with Juvenile Diabetes. 

  • It costs the United States 1 billion per year in health care costs to treat Hydrocephalus. 

Please Sponsor Team Tyler for the walk in Phoenix this October. Help us raise awareness for the millions that have this condition. 

Please join Team Tyler HERE and any amount of money you can or would like to donate, please do. In honor of these warriors, please help them fight longer!

Sunday, August 31, 2014

September is Hydrocephalus Awareness Month

Hydrocephalus is a condition of the brain that is derived from the greek word "water." Most people know it as "Water on the brain" or fluid on the brain. The "water" is actually Cerebral spinal fluid (CSF)  and it has accumulated in the brain because of a malfunction or defect not allowing it to leave the brain.

There are several forms of Hydrocephalus. The first form is congenital. Meaning that when you go in for that "BIG" ultrasound and they are looking and measuring the head, they are looking for abnormalities in the brain and head size to see if your baby has Hydrocephalus. It is a preterm diagnosis for most if the condition is congenital.

There is also acquired hydrocephalus in which the was some kind of trauma or damage done so that the CSF couldn't leave the brain causing a back up of fluid. This back up of fluid or obstruction, causes the head to swell and can cause blindness and brain damage if not relieved from the patient.

There is also a Normal pressure hydrocephalus that can be a cause of dementia and a few other forms. But the 2 above are most common.

Prematurity and brain bleeds are a huge factor for children to have acquired Hydrocephalus. Tyler was one of those statistics.

They University of Utah 2003 data suggested that 1-2 children in 1000 are born with Hydrocephalus and account for 0.5% of all PICU and neurosurgery unit admissions. It is a rare condition, but  a serious one none the less.

The only way to treat hydrocephalus is with a Shunt. Or a catheter in the brain with silicon tubing that runs under the skin and carries the fluid out of the brain and into the heart or abdomen. The shunt was invented in 1960. Very few major advances have been made to the treatment of hydrocephalus. The course of action is the same as it was SO long ago.

The failure rate of a shunt is 80% in the first year and can malfunction at any given time.

Hydrocephalus is grossly underfunded and research is almost non existent.

Tyler was diagnosed with Hydrocephalus in the NICU in October of 2005. We were transferred to PCMC where Tyler underwent his first brain surgery. He had a reservoir placed where his doctors could take fluid off his brain when it accumulated until he grew out of the condition or he needed a shunt. As time went on, he did have long spaces where we were not pulling off any fluid.

Tyler left the NICU unshunted. In February 2006 he underwent another brain surgery for a condition called Sagittal Craniosynostosis.  About 30 days after that procedure Tyler got very sick. We went by Ambulance up to PCMC where his heart rate was going lower and lower. Finally they did a CT scan and he went in for emergency brain surgery to have a shunt placed.

30 days after the initial placement of his shunt, and after a month of him crying non stop, we figured out that his shunt was over draining. We were immediately taken in and a revision was done on his shunt.

In 2008 Tyler got sick and was sick for about a week until we figured out that the sickness was not the stomach flu and we needed to go back in for another revision. 6 months later, his shunt and broken again and we were back in the operating room.

We have been stable, but every throw up sends me into a major panic attack. I don't know if it means brain surgery, or just a night of vomit. We have since developed seizures and have grown much bigger. But so far the shunt is still working. In the last year we have had a few ultrasounds, MRI's and CT scans where we see all the extra tubing in his belly. We also see the extra shunt in his head that they couldn't get out.

Tyler has slit ventricle syndrome and he is a very peculiar case. His Doctor, Dr. Marion " Jack" Walker, is one of the best neurosurgeons in his field in the slit ventricle department. We feel lucky to have him.

We would love to find a cure. We would love better treatment options. We need more awareness!

 We will be walking this year at the Phoenix walk in October. Please click HERE to donate in Tyler's name!