Melissa Ellmer - Children's Hospitals Family Advocacy Day 2009

Thank you ALL

2009-06-24T21:21:17-04:00

I can’t believe this is my last blog. Some days writing was tougher than others but all and all I have such a good time writing to all of you. In the end I hope that what I had to say made a difference to our law makers.

I would like to take a minute to thank the people who helped me get this all done.

First off my mom. You have always been there for me and this was no different. When I was being lazy you pushed me to get the job done. Thanks, you are the BEST! I love you more!

Trisha Yurochko, what can I say? You helped my mother with all the technical work. You have been one of my biggest supporters. I could have never got this finished without you.

Donna Provenzano, I know your back was bothering you, but you made my trip to Washington so much fun! Thanks for all the night time swims. We need to have another girl’s movie night soon.

Amy Mansue, you are the best! Thanks for having all of this faith in me. The children at Children’s Specialized Hospital are lucky to have you on their side. We walked miles on Capitol Hill and you did it in the most beautiful high heel shoes.

Stacy, I know some of my blogs came in a little late thanks for working with me.

And to all of you who supported me in the adventure, thank you. Reading your comments made this one of the most wonderful experiences I have ever had. Sorry I couldn’t write back to all of you.

What does the future hold for me? I don’t know yet, but I’m sure it will be an adventure. I think I would like to be a teacher. I will keep you all informed.

I am more sure about the immediate future. School is out for summer and next year I start high school( this scares mom and dad to death). This summer I am going to camp and on a trip to Myrtle Beach (Thanks for the condo Mark). I can’t wait to spend some downtime with my family. Thank you all again and have a great summer.

Let’s remember I would not be doing any of this if I hadn’t been cared for at the Best Children’s Rehabilitation Hospital in the country. Thanks to all the staff at Children’s Specialized Hospital you helped me become the person I am today and because of every one of you my future is limitless.

The Hill

2009-06-19T00:05:00-04:00

Thursday was a very busy day. I got up at 6:00am showered and got ready. My mother and I met the president of Children’s Specialized Hospital, Amy Mansue, and the Director of Family Centered Care, Donna Provanzano, in the hotel lobby and checked out of the hotel. Our first stop was the train station where we left our luggage. We then met up with Rob (sorry I don’t remember his last name). Rob was our guide to Capitol Hill. We took a short taxiride to “The Hill”and that’s when the fun started.

Our fist stop was Congressman Adler’s office where we spoke with Ms. Jill Greco, theChief of Staff. Ms Greco was very nice and took the time to listen to my story and wanted to know how she could help other children. I really felt like my story made an impact on how she will look at health care reform.

Our next stop was to Congressman Frank Pallone’s office there we spoke to the Legislative assistant Robert Clark. He took us into an office with a really long table and we all sat around it. We explained that we had come to speak to him about the health care reform bill. My mom told him about my accident and Amy spoke about the kids that are cared for at Children’s Specialized Hospital and then he asked me what I wanted him to know. I told him that all children need health insurance and that with out great health care I would not be the same person I am today. I also told him that I was very close to dying and that I was alive today because I had both access to great children’s hospitals and the health care insurance to cover me. He was a very nice man and took a lot of notes.

Next we ran what felt like 10 miles to Senator Frank Lautenberg’s office and there we spoke with Ms. Apryl Clark, a Legislative Assistant. She was very nice and listened to my story. She took notes too and made me feel very comfortable and asked me some questions about my accident and my recovery.

Our next stop was back to the first building to Congressman Leonard Lance's office where we met with legislative assistant Mr. Jeffrey Last.I remember that because Mr. Last was the last visit for the day. His office was so busy we decided to go down to the cafeteria to talk. He was very kind and really wanted to help us and took a lot of notes. My mom and Amy talked about the time I spent in the hospital and I told him about my recovery. He was a really nice man.

We had a really busy day. On the Hill every one we met treated us wonderfully and took the time to listen to what I had to say. I know how busy their days are and I am thankful that they made the time to meet with us. Every one of them made me feel at ease and although I am sure they had a hundred things to do, they never made me feel rushed. Thank you all for a day I will never forget.

WOW

2009-06-18T06:45:00-04:00

Boy, today was an early day. I got up at 6am to get ready for my big day on Capitol Hill. We plan to speak to the following representatives: Congressman Adler, Senator Lautenberg and Congressman Lance. Can’t wait to see them and get my point across to them. I hope they listen!

Party Party Party

2009-06-17T23:48:47-04:00

My favorite part of the party was getting my picture drawn. I can’t believe the artist knew I loved Facebook, Myspace, Twitter and lets not forget Typepad. My mom, Donna and I went down to the Ballroom and when I first walked in we said "Hi" to everybody and picked out our table. We saved Amy a seat and we all had a great dinner together. After dinner we took our desert to the pool.

Tomorrow we visit the Hill. Wish me luck!

Video blog

2009-06-17T18:16:51-04:00

I just finished doing my v-blog; it’s a video interview that will go on my blog page. I was a little nervous at first, but John made me feel like no cameras were shinning on me.

He asked me questions like what has Children’s Specialized Hospital done for me and my family? I was also asked what I wanted to tell Congress. My message to Congress is that all children need health care and that we should let the specialists decide how much therapy and services a child needs to fully recover.

Watch my video.

I am here!!!

2009-06-16T19:20:00-04:00

Well I am here! My mom, Donna and I arrived about 3:00pm. We just checked into our rooms and we are heading down to check-in with N.A.C.H. Then we are headed out to dinner and maybe a late swim in the pool. Tomorrow we have a radio interview at 9:30am. I will let you know how it turns out.

Watch out Washington, DC - Here I come.

2009-06-16T08:58:17-04:00

Today is the day.

It’s 8:00 am and my mom and I are making sure we haven’t forgotten anything. We will be taking a 9:30 train to Trenton and then an Amtrak train to Washington. I can’t wait to get there. I have butterflies in my stomach. My mom says that’s normal.

Well I have to go put my shoes on and get going. Watch out Washington, DC - here I come!

Wow!! Only two days until I leave for Washington, D.C.

2009-06-14T22:44:45-04:00

I have been very busy getting ready for this trip. My mom and I went shopping for a new dress and I had my nails done on Friday. We will be leaving on Tuesday morning, but I have a lot to do before that. I have an end of the year trip with my class tomorrow where we will be swimming and having a big picnic. I will be graduating from my school at the beginning of next week.

This summer my family is planning to go to South Carolina. All of my aunts and uncles and cousins are going to get together for two weeks and meet at the beach. We have been going to South Carolina for as long as I can remember and I can’t wait to spend another summer at the beach.

I also have plans to go to camp. I have been going to the same camp for eight years. I have a great time at the camp and have made a lot of really good friends that I can hardly wait to see again. Boy, I will be busy.

Well, I have to go, I have a lot to get ready for.

5 days till Washington, DC

2009-06-11T23:00:48-04:00

I am thrilled to be a part of the Family Advocacy Day Conference that will be held in Washington, DC on June 16^th, 17^th and 18^th. This year is very important because Congress has started working on health care reform and we need to remind them not to forget the children when it comes to health care reform.

When I was in my accident my family had a really good insurance plan and even though almost all of my medical bills were paid my family was still left with paying the co-pay and deductable which turned out to be a huge amount of money. My mom tells a story of how a bill for $97,000 came in the mail and on the bottom of the bill it was stamped “This bill is due upon receipt. Is there a reason why this bill is not paid?” Can you imagine what that bill would have been without health insurance?

I want to be a voice for all the children who are unable to come to Washington, DC. I have been thinking about what I want our lawmakers to know and I thought I would run it by all of you and you could tell me if I missed anything that might be important to you and your family.

· I want our lawmakers to remember that children have no choice in the health care their family has and we cannot go out and enroll ourselves.

· Lawmakers can change this by giving every child health care from birth until 21 years of age. This way if our parents lose their job and their health care the children will still be covered.

· I had Physical, and Occupational and Speech therapy 2 times a week for almost 12 years.

· Some plans put limits on the amount of therapy a child can receive; we need to leave this up to the specialists working with children not the insurance companies.

· During my recovery I had many devices that helped me. The technical name for this is durable medical equipment. Even with the insurance my family had many of these were not covered at all. As I had talked about in one of my blog posts, I am waiting for a new device that will help me walk more naturally. This device is over $6,000. None of it is covered at all by my parents' insurance.

· Our new health care reform needs to change this and help families get the equipment their children need.

· Many adults have chronic health conditions that began in their childhood.

· If lawmakers take care of the children now we can change that in the future.

These are just some of my ideas I would like you all to comment on and let me know what you would like added. I will let you all see my final copy soon. I have to go... I have three exams tomorrow. BOO HISS!

Only one week till my big trip.

2009-06-09T22:30:24-04:00

Hello Everyone

I can’t believe that it is only a week until my big trip to Washington DC. I have to admit I am both a little nervous and very excited about trip. I have a lot to say.

As most of you have read I was hit by a car when I was 17 months old. I do not remember the accident. The accident caused a fracture in my skull and I was not expected to survive. I spent 10 days in a coma at a children’s acute care hospital. Unfortunately the hospital closed shortly after I was there. When I woke up from my coma I was transferred to Children’s Specialized Hospital. Children’s Specialized Hospital is the largest children’s rehabilitation hospital in the country and lucky for me it was only minutes from my house.

When I arrived at Children’s Specialized Hospital I could not move at all. My dad tells me I could not even smile or hold my head up. Children’s Specialized Traumatic Brain injury Team put together a rehabilitation program for me and my journey back began. My family tells me that the physical therapist worked with me to help me sit up, hold my head up and that all these little steps lead to me taking my first steps all over again at the age of 2 with my little red walker. My mom says that she was even more proud of these steps than the first ones because I worked really hard for it. They also remind me how the speech pathologists worked with me to teach me how to swallow so I could eat on my own. How the occupational therapist taught me to use my left arm and how to accomplish almost everything with one hand.

I would like to remind the law makers in Washington DC that the reason I can write this blog is because I had access to the best rehabilitation therapy at Children’s Specialized Hospital. Their name says it all; a hospital that specializes in the care of children. Please don’t forget the children when working on health care reform some of us need specialized care in order to achieve our dreams.