The End Of Hydrocephalus Awareness Month

September is Hydrocephalus awareness month. I haven’t done much this year because it is not something that I like to think about. I hate worrying about Ty and his shunt and a malfunction and right now we are in a very VERY good place. I know that is not always going to be the case so for now we go on as though we have no worries in the world. BUT, I want to make sure that we don’t end the month with NO facts about hydrocephalus.

1 in every 1000 babies have hydrocephalus and is as common than Down syndrome and MORE common than Spina Bifida and Brain Tumors.

It is the MOST common reason for brain surgeries in children. 

There has been NO changes in treatment for over 50 years with no new treatment, or advancement  for a cure.

More research is needed to give better and more positive outcomes for those with this disease/condition.

There is no cure. 

There is no remission. 


Treatment is the same as it was 50 years ago. For every brain surgery your shunt has a 50 percent of failing within the FIRST YEAR of 50 percent.

If you were to buy a car and have it fail within the year the company would be out of business, but unfortunately, that is what these kids have to look forward to.

We will be participating in the hydrocpehalus walk in November here in Arizona and will be doing what we can do collect money for hydrocephalus.

We love our Brain baby. We wish him well with his shunt and are so happy to be in the place we are. We are still on edge when we start showing symptoms of malfunction, but we know we can do hard things.

We are proud of how well Tyler does when he is in shunt failure and how well he bounces back. We are proud of how well he handles the adversity that is put in front of him. He has so many things stacked against him and he always, ALWAYS, does his best.

A huge shout out of love to our favorite Neurosurgeon in the entire world. Dr. Walker. He has always been Ty’s biggest fan. And a HUGE shout out to Dr. Elton who decided to desert us here in the dessert and introduce us to Dr. Shafron who takes GREAT care of us and is a great help when needed.

Thank you, to those who support us financially when we do the walks and for those that support us when we go through brain surgeries. We are truly blessed to have Tyler be so great.

Education and research is needed to help those who are diagnosed with Hydrocephalus. And it takes a great person to be a brain surgeon!

Out of My Mind

I was told of a book several months ago about a little girl with special needs. I took the recommendations and filed it away. I don't love reading books about "special needs." Most people, when hearing special needs, think of 2 maybe 3 different things. They think 1) Downs syndrome. 2) Autistic and 3) wheel chair bound, drooling, seizures, blah blah... ( we are only like MOST of that) but we are never really clumped in with the "group" or we are way clumped and I just kinda am blah about it. Plus it is fiction. It isn't real life and the author just won't "get it."

After a date with Dallas ( we have had ONE.. that is right ONE) since we had Grayson, we went to the bookstore and looked around. I googled the book and really wanted to find it to see if I would be interested. It was a no go at the store, so I bought it on kindle.

The book is called Out of My Mind by Sharon Draper. It is a book for about 5th graders on up but I read it any way. I was so glad I did. Like the person who recommended it to me, she thinks that it should be read by teachers and students on every book list from 5th grade on.

The book is about Melody, a young girl who has severe cerebral palsy. The book is told by her. it is from her perspective about what is going on around her. it is about what is happening to her and how she finds her voice and the people who believe in her.

The book had parts in it that made me put it down, cry a little and go back to it. There were some very raw emotions. Things that SHE felt that her parent felt or things that she figured out about what she was hearing around her .She especially acted a certain way while she was in the doctors office because they didn't think she was any more than a vegetable.

She felt bad about the clothes her mom put on her. She felt less dignified that she had to have her underwear changed or wear a bib. She was not treated as though she was a person. A real person with ideas, likes and dislikes. But was treated as though she was a condition. And the condition was what people saw. ( the wheelchair, the muscles unable to do anything that she wanted her to do.)

I won't give away anything else of the story. It is a quick and easy read and I think anyone who knows Tyler or will be associating with him, or who teach him and love him should read that book. Because some where trapped deep inside him is the same situation. He has SOOOO much to teach US and so much to learn and so much to show us that he knows, but lacks a way to get it all out.

Really, what it came down to is that a person is a person. They have likes, dislikes, and they have a need for help. They need the help to become the best possible person they can be. The parents need someone who is willing to help them became the best possible parents. They need support. Everyone needs something.

HOORAY!! Another list

Not only is it another list but it is actually a TANGIBLE- you can see where you ARE on the list- list. For me that is a NICE little list. The pretend list is kinda a cheap way of saying " Good luck with that."

So what is this list? Tyler is OFFICIALLY on the BIKE LIST at Shriners! He had specific things he had to reach in order to get on the list and our Therapist is kind of a stickler on it. He waited until Ty could DO them not just almost do them. While I understand I was still a little ticked.

Since the weather didn't actually and fully suck for a few days we were able to go out and play on his bike. When he has motivation and other kids, pedaling alone for 5 times is a BREEZE. So when we were in Therapy he got mad and was told to go find mom. He was TICKED but it did the trick and off he went.

The therapist asked me what color of a bike to order and I said it was Tyler's bike ask him. So he did. Ty replied " I want a green one please" and we asked a few times to make sure he was sure and he was SURE.

So Ty will be the proud owner of his VERY OWN bright green, RIFTON bike. It should work for several more years for him and he can do all he needs and wants to do on it.

Rocks!

Our neighbor has a rock bed. We spend a lot of time over there. And she just smiles.

One day we are throwing them into our yard. The next time we are throwing them back into her bed.

With a rock filled yard Tyler is in rock throwing heaven

The bubbles and rocks make for a VERY nice afternoon.....

If only it wasn't so COLD!

But all in all... we are all boy and we like to throw the rocks!!

Ty's school photo