World Cerebral Palsy Day

Cerebral Palsy is  THE MOST common disabilities in children.

1 in 500 will be diagnosed.

Of those  diagnosed:

70-80% have spastic muscles. Which means they are stiff and tight.

1 in 3 are unable to walk

1 in 4 are unable to talk

3 out of 4 are in pain all the time

1 in 4 have epilepsy

1 in 4 have a behavior disorder

1 in 2 have some developmental disorder

1 in 10 have a severe visual impairment

1 in 4 have bladder control problems

1 in 5 have a sleep disorder

Tyler has Cerebral Palsy. It effects his walking and talking. He has epilepsy. He has anxiety and other behavior disorders that we are working on this year. He is developmentally delayed and has severe visual impairment. He has no control over his bowels or bladder and has a sleep disorder not limited to periodic limb movement disorder and the inability to turn off his brain enough that he seizes more 45 percent of the night.

There is not one “normal” aspect of his life.

There is no cure.

Hurray!!

What an INSANE week. After the Spastic clinic and Baby Isaac coming I really wanted a calm and collected week. Nothing ever goes as planned. At the end of the week, after 8 months of waiting and many phone calls, reorders and mean words to insurance companies and IHC people we became the owners of a NEW Swifty stroller.

After talking to the wheel chair shop every day this week the Secretary finally talked Shane ( the wheel chair dude) into letting us get it before all the accessories are in. I was SO thankful. I really, really needed it. Ty and I had a full day planned on Saturday where it would be impossible to do without a stroller. I couldn't have been happier to get it.

When Ty got in to try it out he said "Wow. I fit." Promptly got out and went to play. We used it on our outing and it was wonderful.

Today while it was raining, we used it to get into Shriner's.

I couldn't be more thankful.

* The cost of the stroller is HUGE. Though we find it wonderful and amazing it came with a price tag of about 4 grand. Insurance does NOT cover it all. *

The lady at the park

For summer we have been hitting up the Library for story time 2-4 times a week. Ty really likes the interaction with the kids, he loves the music and it gets us out of the house. He has also really liked that he can take home a book and a movie for a week and get a new one.

The last week the weather has been really good so when we get done with story time we head to the park. Sometimes there are a lot of kids. Other times there isn't.

Well this day there was a few. Not a ton. Ty is just fine going out on his own there at the park. We just let him go at it. Obviously he looks a little different when he is running. When you find out he is almost 5 people get a SHOCKED looked on his face cause he is TINY. ( He is about the size of a 3 year old)

A well intentioned mom comes and stands next to me and just says " I know someone with Autism."

I wasn't sure if she was wondering if Ty had autism or just had noticed he was different and that was her way of kind of breaking the ice. I said yes there were a lot of kids that have autism in the area. She paused. I said Tyler doesn't have Autism he has cerebral Palsy. Her answer was CLASSIC : Oh, I bet that is REALLY hard. I honestly rolled my eyes and said no he is a really good kid. Most of the time he is really good but yes we have other things we have to do because of the cerebral palsy.

Then she asked me if we had tried that GF diet. It really seems to help the kids function better. I told her that a diet wasn't going to help Ty because he has Cerebral Palsy. SHE KEPT ON! She said I shouldn't vaccinate him because he will be in worse shape than he already is.

I nicely said that Tyler has brain damage and he has cerebral palsy because of the damage in his brain and that a vaccine didn't cause it NOR will changing his diet. In fact if we change his diet he won't eat and then get even smaller.

I know her intentions were good. I have no doubt that she was trying to be nice or was just curious but I was a little frustrated.

The four walls of our house are not negative places. We don't always notice the things we can't do. In day to day activities we are not forced to see our delays. We cater everything to him no matter what his ability. It is times at the park or the pool or around others we are forced to see. Especially the stares from complete strangers and the lack of compassion, love and understanding from those who are suppose to love him

It is hard to not see that finding a sitter for him is hard because people are afraid of the disability and not willing to look at the kid. The sweet loving kid who has had to walk through HELL to stay alive.

It is hard to not be bitter and angry at God and question Why. Why does he have to hurt EVERYDAY? Why can't he talk and tell us what he needs or wants? Why do people have to be cruel, well intentions or not?

He is a great kid. He is a loving kid. He has a personality. He is funny. He is smart. But above all he is still a kid. Your knowledge of him can only go as deep as what you see if you aren't willing to ask or to participate in his life or care.

If you are the lady in the park, my hope is that you will ask about our child. Not give advice on how to fix him. Don't say you are sorry and that is really hard. Tell them that he looks LOVED not broken.

National Cerebral Palsy awareness day March 20th

I love someone with Cerebral Palsy. Well, actually I love someone who is amazing, smart, cute, nice, loving, caring, and brave. His name is Tyler. And Tyler HAS cerebral Palsy.

About Cerebral Palsy:

• About 10,000 babies per year in the U.S. will develop cerebral palsy (Center for Disease Control and Prevention
• An estimated 800,000 people have cerebral palsy in US (United Cerebral Palsy)
• About 2-3 children per 1,000 have cerebral palsy (March of Dimes).
• In 2003 dollars, the average lifetime cost of cerebral palsy is an estimated $921,000. This does not include hospital visits, emergency room visits, residential care, and other out of pocket expenses (National Institute of Neurological Disorders and Strokes NINDS).
• In 2006, out-of-home respite care at the Respite House in Oshkosh, WI for children and/or adults with disabilities costs $144 per day, or $52,560 per year.
• Two-thirds of children with cerebral palsy will be mentally impaired (NINDS).

About Tyler:

• Tyler knows the sounds for EVERY alphabet sound.
• He walks and he gets up time and time again, when he falls.
• He is caring. He always always gives me hugs and when he knows I am sad he will try and make me happy.
• He says amazing little prayers at night. And though his words don't all come out he is heard.
• He loves his dad.
• He loves school
• He loves kids
• He loves bubbles, water swimming, jumping and getting wet.

So while there are a million and one reasons that we could be defined by Cerebral Palsy we aren't. We have it. But we are strong. He is strong. He is the best and most amazing little person.

So.... Do you love Tyler, a boy who happens to live with Cerebral Palsy? Cause I do!

An update in the midst of Prematurity Awareness

Since Ty is the reason we blog about awareness I think it is about time we had a little update on his upcoming adventures.

We have started Speech Therapy at Shriners hospital. I am so thankful that we were able to get in someplace. He is doing REALLY well. We have also increased the really annoying sounds at home and have gotten him to recognize almost all of his letters. We are getting sound and it is VERY encouraging. The biggest thing that has gotten the MOST smiles is his new word. Dallas sister Sheena is staying with us for a while and Ty and Sheena have this bond. Seriously it is so cute. But we were working on a WORD.. just any word... so we combined a few sounds we all ready have and came up with something that would work for Sheena. So His word for her- SHH A.( the A sound what he says at the end) Super cute. He gets so excited and claps and claps and in the corner Sheena BEAMS. He will say SHHA when she gets home, when he goes to get her for dinner he knocks on the door and says SHHA. Oh and if you every meet him.. ask him about Roary. He says it very cute.

Some things we have noticed with his speech ( though positive that it is improving) He cant' form the sounds and words correctly. They are not sure if it is a muscle issue or a brain issue. We are going to be working with a OT to see if it is a sensory, muscle or what issue. That starts in December. They are also not sure if his brain can't put the words together. They are working around a hole so they don't know what exactly is the full cause. We have had to start over in a lot of things and sounds is one of them. It is encouraging to see him improve though.

At night we also have really stepped up the personal prayers with him. Because we are also doing it not just for the spiritual lessons for him but for hoping to increase his vocabulary ( ok EVERYTHING we do with him is therapy even if for the soul :) ) He is DOING it. He is starting most of the words. It is seriously SO exciting.

The next thing we have really focused on is his next step of dealing with his CP. We were doing botox in Arizona and had a consult in Utah last January. At that point the team felt that Botox was what we should be doing. After moving back here the only place we can really get great CP care is through Shriner's and the rehab docs ( which happen to be the same ones) at PCMC. So we really do feel we are getting some of the best.

The CP team and Dallas and I feel that the next step is to do Phenol injections in his gastric muscles and abductors. Because it is more painful than botox they are going to have to sedate him and put him under for it. So while he is under they are going to do Serial casting for him. So he will have both feet in a casts for as long as we can get him to tolerate it.

We are also seeing a sleep doctor for Ty on Monday. There is so much I hope she can answer for us. We are also seeing the OT for a sensory processing disorder. I don't know enough about it yet to really make a comment.

So that is us right now..

My Hero

Dear Hero,

The day you were born was the day you became my hero. You are the strongest, most loving and most amazing miracle that ever entered my world. You are an inspiration to everyone who meets you.

As we have watched you grow, you have done more than you were ever suppose to do. Me and your dad KNEW you would do them. Our Hero has never given up and has pushed through it and done it all.

You make me smile when you hula dance with daddy. When you ask for ice cream because Barney has one. When you give your daddy kisses because Tiger gives kisses. You keep my heart in you hand when you climb up on your daddy and you fall asleep. When you get home from school and head right in to his office, even if he is gone, and sign dad and fish.

I fall deeper in love with you when you pretend to be a flamingo. Or when you take my hand to show me what you want. I fall deeper in love with you when you sit at a table like a big boy and have "conversations" with your daddy and I without saying a word. I love you when you smile that smile and you make that belly laugh. When you lay down ad raise your feet and ask for piggies. When you take rocket with you so you can be brave. When you ask for mom to trace your numbers with you. I love that you work so hard at therapy. That you work so hard to try to say words and communicate with us. You walk like a big boy and you are the best big boy I know.

How can a spirit like yours be trapped inside that little body? How could that little body change me so much. YOU ARE A HERO.

We know that things will get hard. We know that things will hurt. Remember, you are a hero and you will always be a miracle. You will always be my little boy. You will always be my hero.

Tyler.... A hero. That is what you are. A hero.
Courage doesn't always roar. Sometimes, courage is the Quiet voice at the end of the day saying.." I will try again tomorrow."

Bad Day- Good Day?

Bad days happen. I am not worried. Sometimes it takes a little bit before some things sink in. I am not worried about the hearing test nor the thought that he "might" having hearing loss. For one thing, if he did he has had it for 3 years. Second, then we can fix it. Third, I really don't feel like he has any loss. I think he has just had so many people poking at that sweet little head he doesn't want them to touch his ears, let alone poke things in them. He does pass the vision/hearing exam.

I think it just feels like the icing on the really yucky cake sometimes. Most of the time the cake is pretty good. In fact most of the time it is fabulous. But every now and again the cake has a bitter nasty place. Take a bite but then stop cause it tastes yucky. Soon it will be back to YUMMY.

Along with bad days come just the crappy stuff that puts you over the edge. You know, the stuff that when you bite the bitter and the icing is there and makes you cry. A lot of that happened today to. The eye specialist we see for Ty is very hard to get into. After his last shunt surgery I called to get in because we have to have baselines after major brain changes. Well they couldn't get us in any sooner than the appointment we have had set up for six month so I waited patiently. No biggie.

I called last week to double check the appointment and they called yesterday to confirm we were coming. Told them yes. Today we get a call letting me know that they needed to have it CANCELED. I was like OK why? Thinking if the doctor was sick no biggie. Well apparently in the 3 calls and six month wait the referral expired YESTERDAY. If I didn't get a referral in to them by the appointment I would not be seen. Um we had a pediatrician appointment on TUESDAY. A little notice that I would need another referral would be fabulous. it wouldn't have been a big deal at all TUESDAY.

An appointment that I have on Tuesday of next week also needs a referral (which isn't a problem since my doc was sending me there) and the specialist that we are seeing needs some of my past medical records. I call to verify that the insurance referral was sent and that everything was done. She calls back (after telling me it was all set) telling me that I need to come in and sign a release for my medical records. I was thinking " If you are referring me and I am walking out of YOUR office don't you think you would have me sign YOUR release form?"

No big deal right. Well I had respite today and she didn't come. Didn't tell me she was not coming so I waited all afternoon to run errands. These errands included buying diapers. Kinda a needed thing in a house of a none potty trained 3 year old. Oh and the laundry soap to stop his rash.. yeah needed that to. Dallas was nice enough to deal with the said amazing 3 year old so I could run over, sign the papers and get the needed items.

So now I sit in a quiet house, editing some pictures and loving how sweet Tyler is and how amazing Dallas is. They are so what I need at the end of the day. I couldn't ask for anything better........

Except...... I entered a contest a few weeks ago during Cerebral Palsy awareness week and won. The goods came in the mail. Took Pictures for you all to see.


AND I totally scored the coolest shoes at Walmart last night. I decided that EVERYONE is getting a pair for their birthday this year.



And how could the day really be THAT bad when you walk in from your errands and see THIS!!!

Cerebral Palsy awareness day

Three years ago I was not aware of all of the In's and outs of what cerebral palsy was I would have been way off. I knew of the "stereo typical" child with cerebral palsy. I didn't know that that word would become something that I have become more familiar with as each day passes.

While in the NI CU learning how to care for my son we were told many times that he "could be " in a wheelchair. He "could" be just fine. He could be this and he could be that.

I knew he was on the "high end of normal" muscle tone from the beginning and we had a wonderful doctor who watched and didn't feel it needed to go much further. Ty was hitting milestones. He was hitting them late but they were being met.

Around age 2 is when that word Cerebral Palsy came into our everyday existence. And it was also the time that it didn't change anything but yet changed everything all at the same time.

Ty was diagnosed with Cerebral palsy but I don't remember when. Why? Because everyone that we talked to about it seemed to blow off my questions and my direct questions of do we or do we not have it.

What is it?
"Cerebral" refers to the brain and "Palsy" to a disorder of movement or posture. If someone has cerebral palsy it means that because of an injury to their brain (cerebral) they are not able to use some of the muscles in their body in the normal way (palsy). Children with cerebral palsy may not be able to walk, talk, eat or play in the same ways as most other children.

Cerebral palsy is neither progressive nor communicable. It is also not "curable" in the accepted sense, although education, therapy and applied technology can help persons with cerebral palsy lead productive lives. It is important to know that cerebral palsy is not a disease or illness. It isn't contagious and it doesn't get worse.
Children who have cerebral palsy will have it all their lives.

The average prevalence of cerebral palsy is about 1 in 278 children. This first report of the prevalence and characteristics of CP, the most common cause of motor disability in childhood, are from Georgia, Alabama and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance?

- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

Resources: Centers for Disease Control (CDC) and Reaching for the Stars (RFTS)

Tyler is an amazing child. He is not defined by what he can't do. It can be the reason he does things differently than others. I can't change what has happened to Tyler. But I can be his advocate. He is the reason I have learned about and became an advocate for this. I wish there were more treatments and more education out there.

For the awareness day we were suppose to wear green. Ty wore green on Monday. He is my baby. when I hold my baby we just fit. We fit perfectly.

This is why I love someone with Cerebral Palsy....

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