If you follow me on Twitter or Facebook you probably already know that I’ll be serving as an advisor to Danielle’s Foundation. This is a brand new 503c non-profit founded to be a resource for families of children with cerebral palsy and brain injuries. Their mission is to help families gain the knowledge to secure the therapy, benifits and resources needed for their children.

I wanted to take the time to share Danielle’s story here and mention the reference to the foundation as they will be helping parents to navigate the confusing system of insurance and research. Below is an explaniation of how Danielle’s Foundation can help:

How WE Can Help
Immediately following your child’s brain injury or diagnosis of cerebral palsy, you are thrust into a complex and confusing world that feels nearly impossible to navigate. In addition to focusing on your child’s wellness, you’ll also have to deal with issues related to finances, therapies and treatments, insurance, estate planning, and education. These issues go hand-in-hand with roadblocks and frustration. Many parents fight really hard to get their special needs children the benefits and treatment they need, but fail because they don’t know the nuances of the system.

That’s where we can help! We have a knowledgeable team that is by our side for the sole purpose to help you! If your child has recently suffered from a brain injury or has been diagnosed with cerebral palsy, our team can help you negotiate the overwhelming issues you are facing, and can help you come up with a plan that ensures the best future for your child. Our consultations are always FREE, but can buy the peace of mind that comes with knowing that all issues regarding your special needs child have been considered and taken care of.

Our team can help with matters related to:

• Patient Rights
• Navigating the Insurance system
• Filing Appeals
• Advocacy in denials of benefits and services
• Government Benefits
• Therapies and Treatments
• Medical Equipment
• Additional Funding
• Settlements
• Estate Planning
• Special Education
• Resources
• Parent Support Groups

If your child has recently suffered from a brain injury or has been diagnosed with cerebral palsy, our knowledgeable team can help you negotiate the overwhelming issues you are facing, and can help you come up with a plan that ensures the best future for your child. An initial consultation costs nothing, but can buy the peace of mind that comes with knowing that all issues regarding your special needs child have been considered and taken care of.

There is hope. Your child can get the therapies and benefits they need to live the best life possible. Contact us today, and take the first step in securing your child’s future!

And here is Danielle’s story. I’ll forwarn you that it is quite moving.

Danielle Lynnette Vick was born on April 10, 2004 in Atlantic City, New Jersey. Because she was born three months earlier than expected, Danielle needed to be hospitalized for the first 8 months of her life. Her doctors were hopeful and said although she had a long road ahead, there was a great chance that she would be a perfectly healthy child.

Like most preemies, Danielle had some respiratory issues, and some problems with her lungs, so she needed a tracheostomy and ventilator to help her breathe. But she showed everyone she was a true fighter and continued to make great progress. She was a happy, spunky, bright-eyed bundle of joy.

Though her development was delayed, at ten months she was at home, full of personality and continued making progress. She was crawling, rolling over, playing, and just full of life! And then, one day, everything changed.

In 2005, three days after her 1st birthday, Danielle had an episode that forever altered her life. Danielle’s brain went a long time without oxygen. Her parents received the heartbreaking news; Danielle had suffered an anoxic brain injury. The brain damage caused her to lose her motor skills and her ability to speak. She also needed a feeding tube, and was completely dependant upon others for care.

Danielle’s mother, Florence, was quickly thrust into a new world where she had to become an advocate for her daughter to help her get the therapies and services she now needed. It became a constant struggle to get Danielle the care she needed, in fact it seemed like every time Florence turned around the therapies, benefits, and resources Danielle needed were just out of grasp, or were denied by the insurance company. Although her life had been drastically altered, and she no longer was the same active little girl, her vibrant personality and the fight in her remained strong.

Sadly, on December 28, 2008, at 4 years old, Danielle passed away due to complications of her anoxic brain damage. Though her time here ended prematurely, her memory will forever remain. Danielle moved, touched and inspired the lives of many in her short four years of life.

One major result of her inspiration was that Florence teamed with her friend and together they began dedicating their time to help other families—families that shared the same struggles, complications, and frustrations as Florence—get the services, benefits, and care their children so desperately needed.

If you are the parent of a child with a brain injury, we know the questions you have, the frustrations you face, and how your biggest goal is to make sure your child lives the best life possible. It’s a little more complicated to get our children what they need, and it takes a little more time, effort, and research, but with the right support and direction, it can be done!

We created Danielle’s Foundation as a place where parents can come to for guidance, resources and most importantly support. We’re hoping you’ll join us in our crusade to provide peace of mind and hope for the future for parents of children with brain injuries everywhere!

You can visit Danielle’s foundation by visiting www.daniellesfoundation.org

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Last week I wrote a post about Why do I have to Wear braces? Apparently the questining in school has not stoped. Yesterday Haley told her therapist at school that one of the kids told Haley she walked weird. She told another therapist that she and Mommy decided she didn’t have to wear braces on days Haley doesn’t have Gym and therapy. When she and I talked last night she told me about the girl and I asked what Haley said back to the girl. Haley said well she was mean so I didn’t say anything back because it’s mean not to say anything. Mel and I talked about it with her and told her she could just say that she walks different but otherwise she is the same as everyone else. When we went out of the room and left her to sleep I heard her practicing what she would say when asked.

We were both very upset and Mel posted her frustration to Facebook and we received such a tremoundous response from our friends who truly are just wonderful people. We got a very good suggestion of what to say along with many offers the kick the little girls butt. At any rate this is one of those difficult times as a parent when you just need to provide all the support you can because the world can be crule. This is when we need to teach the positive outlook and how to properly respond. I guess this sort of leads into the second topic I want to cover today and the other blog topic I wrote about last week – Rhizotomy.

I was doing a search today trying to learn more about the surgery and came across a few interesting topics and posts. First I want to reccomend this blog by Ken. You can vist it here at kenmuzteach.blogspot.com. Ken is an adult I’m guessing around 30 something who had the SDR this summer. He has been keeping a blog about the experience and it is quite interesting to read his experience. He is intending to server as a resource for other adults but as a parent it is very enlightening to understand what spacisticity can do to you as you age and why the surgery done at a young age can be and is very bennificial. I also failed to mention the best web site to find out the facts abou the surgery and that is the St. Lous Children’s Hospital web site. Dr. Park is the Dr. who has perfected the surgery and trains most of the doctors who perform the surgery. After watching the videos from the previous blog entry and seeing the video that follows along with what Haley has been going through at school I’m now convinced that the surgery is the best course of action. Check out the video:

So I guess the next step is to figure out when and how to talk about the surgery with Haley. Since I don’t think we will be doing the surgery until the spring I’m sure it’s too early because it can only lead to apprehension but perhaps know it will help her walk more easily and “normaly” will be of encouragement. I guess that’s one we’ll need to ponder carefully.

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So the braces question that I posted in my last blog brings up a surgery we have been considering for my daughter. The surgery is a Selective Dorsal Rhizotomy (SDR). This is a surgery where the doctor cuts into the back and goes into the spinal cord. They then stimulate the nerves to see which ones are causing the extra noise and creating the spasticity. Once the nerves have been identified they cut those feedback nerves to minimize the spasticity. The objective of the operation is to allow my daughter to move more smoothly. She will not gain the full control that a “normal” person has but she should have more fluid movements which would allow her to run more easily, climb stairs and obstacles, and hopefully fall less.

I’ve spent the last few weeks talking with parents and people who have had the Rhizotomy and most feel the results were worth while. There was one person who had CP has not had the operation done and felt that the operation was bad. One parent said that they did not have a good experience with the operation. I spoke with a women who said she had it done and it worked until puberty kicked in and then the spasticity returned. Most recently I’ve spoken with 4 parents who have had the surgery done on their children that were very happy with the results. One parent had the operation done on her child when he was 8 and thinks it’s the best thing she did. Her son is now 18 and doing very well. The other parents had their children worked on this past year and feel the results early on are very good. One little girl had the surgery done when she was 4 and the before and after video are truly encouraging. I’m including the videos below along with some other videos I found on YouTube so everyone can see the results.

We are tentatively planning on the surgery for Haley next summer and will go forward with it unless something drastic changes between now and then. I’m hoping to have a radio conversation with some of the parents over the next few weeks to discuss the surgery, the results and the PT necessary after the surgery. It’s significant physical therapy and will require a great effort. The program will be conducted as a sort of round table assuming I can get the participation. Enjoy the videos. I’ll be posting some of Haley over time as well so you can see her current performance and then after the surgery how things have changed.

All I can say is WOW!!!!!. Haley is fairly similar to Emily based on level of involvement (how affected she is by the CP).

I don’t know if Andrew has any Pro SDR video but Here is the progression of his post op videos.

4 days post op

2 weeks post op

3 weeks post op

4 weeks post op

3 months post op

This video is just very moving and an incredible success story for SDR. Wheelchair to walker to??? It just brought tears to my eyes. You go Henry!!!

If anybody reads this and has had the surgery done please, please, please share your thoughts in the comments below. Let this page serve as a resource to those who are thinking about the surgery.

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Yesterday morning my wife got the question. “Why do I have to wear braces?” I too got the question earlier this summer. It’s a very hard question to answer and not one we can take lightly. My wife was better than I was at answering the question and said well you just decided to come early and you weren’t fully finsihed growing so now you have to wear braces while you catch up. Haley responded with “I didn’t decided to come early G-d decided.” I’m not sure how my wife responded to that but when Haley got home she brought the subject back up and offered her the opportunity to be brace free one day per week when there is no Gym or PT. Haley was very excited about that idea and we’ll be moving forward with that. I’ll have to deal with the G-d question later tonight.

My biggest fear from the day we found out Haley had CP was how we would deal with the “why am I different question.” Everybody is different but most people are in their late teens or even full blown adults by the time they realize it. At a minimum most people are in High School. I personally was about 8 or 9 when I began to realize that I was different. That was when I realized that most people my age could read and write while I still couldn’t. From the time I was 8 until I was 12 it got worse and I really had a hard time and probably struggled with a bit of depression. The funny thing is that most kids never noticed my problems even though I thought they did. One of my friend on the other hand did have CP and had a truly difficult time walking. He was ostracized by the other kids at least some times and generally had a great attitude in spite of how the kids, sometimes myself included, treated him. It wasn’t until after I had Haley and asked him if it had affected him that I found out how hard the teasing had been on him. I guess I need to call him to see what he would recommend right now.

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I’m very tired and don’t feel well but I promised Haley I would write a quick blog to mark the momentous day. Today Haley is trying panties overnight. I didn’t know until earlier this week that people with CP sometimes have bladder problems. Haley does very well during the day so we are very hopeful that tonight will be a success although we are set for all possibilities. We’ve all planned our responses if there is an accident and we know our brain will learn from it and make tomorrow better. So here is to marking this tremendous day.

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