Dear Friends,

Most of you already know that at the beginning of the school year one of Haley’s classmates called her weird. That event set off a spark and Haley with the help of Raye Lynn decided to write a book about Cerebral Palsy and explain what it is and how she is not weird. The book turned out to be wonderful so we decided to publish it.

The book is being published as an 8.5×8.5 hard cover.

The time has arrived and the publisher is ready to print. We are taking initial pre-orders for the book.

If you are interested in pre-ordering your copy the cost is $19.95. This is $5.00 off the cover price. We will be donating 10% of the proceeds of the sales of the book to the ALC. The (ALC) Adaptive Learning Center was instrumental in helping Haley achieve her current abilities and confidence and we love the program.

Haley, a first grader, never thought of herself as different because she has cerebral palsy. When a new classmate told her she was weird because she wore braces and walked funny, Haley was upset. She did not know what to do or what to say as a response. With help from her parents and grandmother Haley decided to write a book explaining that she was not weird-cerebral palsy is not weird. Haley tells what cerebral palsy means and tells all that she does, just like everyone else. Haley brought her book to school and it was read to the class to help the children understand. Haley is proud of herself and hopes her book will help others to understand about cerebral palsy

Haley is an incredible girl who’s just like anyone else except she walks differently. Haley’s writing guide is RayeRaye, her grandmother, the director of a pre-school where she helped to facilitate a model inclusionary pre-school in Atlanta. Haley lives in Marietta, Georgia with her parents and sister and brother.

If you live in the Atlanta area and we can hand deliver the books to you choose the local pay pal button. If you are not local, do not know us, and we will have to ship the books to you please choose the pay pal button labeled “With Shipping.” The shipping charges are $2.99 and we will send the book via USPS media mail.

With Shipping	Local

Please note book will be ordered on Monday. Delivery time will depend on how quickly the publisher is able to deliver.

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This blog My Spelling Sucks was initially put up to discuss my oldest daughter’s CP and my dyslexia/add. We will be getting back to that core mission soon. I’ll be moving the DADvocate work to it’s own blog hopefully by the end of the month. In the meantime today’s post is all about original intent.

We are getting closer to Haley’s operation and quite frankly I’m very nervous. Haley keeps telling us she is scared and I have a hard time not responding with I am too sweaty. Mel and I talked for a while tonight rehashing our decision and while we both know it’s right for us to make the decision we still are nervous. I decided to link up some of my old posts tonight so I had the opportunity to review them and so I could provide a central resource on Rhizotomy info on this blog. I also recorded Haley’s exercises tonight which I’ll post as soon as they upload. Note: I am not posting the entire routine as YouTube will only take a 10 minute video.

Rhizotomy DADvocate I’m Not Weird
Rhizotomy Next Steps
Rhizotomy Surgery is never an easy answer

The video is still uploading and I’m tired. I’ll add Haley’s exercise to the post in the morning. In the meantime Here are some before and after videos from St. Louis Children’s Hospital:

Video 1
Video 2
Video 3

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There are two blogs below. I initially wrote the fist blog, read it, and then re-wrote it in the second. Funny how a change in your point of view can really change how you feel about a topic. I hope you enjoy.

I apparently have set some pretty hefty goals for myself this year and at the beginning of March I’m feeling the pressure. If you read this blog you know I’m dedicated to the DADvocate project and while it’s going well I really thought I would have many more responses to the survey by now. As is I’m 10% of my way to the goal of 1000 participants. I feel like I probably should have had many more responses but the initial survey design which I pushed out to all my old friends was designed poorly and many of them thought they completed the entire survey even though they only answered the first page of questions. I suppose it’s time to reach out again and ask one more time. I’m just hesitant to appear as if I’m being too pushy.

My daughters book is being published. We are working with Publish America to bring “I’m Not Weird” to market and I’m very excited that the book should be available by the end of the month. However that book should be the biggest thing on this blog right now and because I started the DADvocate Project here I’m afraid that it will lose some of it’s impact. I’m working on designing a new blog for the The DADvocate Project but it seems to be taking a long time and I don’t seem to have all the time I need to get it done. I also want to do a strong media drive on Haley’s book but that takes time as well and I just don’t know where the time is coming from.

Finally I have been training hard for a 1/2 marathon that is scheduled for the end of April. This past week I’ve run a total of 14.5 miles. That is more than I’ve run in a single week ever but i’m still pretty far off schedule and to say I ran 14.5 miles is probably a bit of an untruth. Maybe it’s better to say I’ve traversed 14.5 miles this week most of it running, all of it breathing hard and hurting. I do feel good about the distance but my left leg hurts pretty badly after my runs and I just don’t see the end in sight.

Oh yeah some how I’m trying to maintain my relationship with my wife and kids, do well at work, pay bills, participate in a number of communities, and blogs, occasionally attend services, see my family, maintain friend ships and sometimes get a break and watch tv. Oh did I mention that I maintain another blog and guest post on DADomatic. I also have two dogs that are being neglected but still love me because I feed them. I wonder if I’m crazy?

On Saturday I did my first video interview of the DADvocate project. It was with the founder of “I’m Not A Famous Blogger” crew and BenSpark.com blog, Drew Bennett. The interview was great and I really look forward to the day I have the chance to meet Drew in person. As for the video I’ve had a space issue on my computer. I’ve spent a large part of yesterday and much of this afternoon and evening trying to get files moved to the correct places so I can actually edit the movie. It turns out I’ll probably have to use much of tomorrow evening to finish moving files, formatting drives, and making everything work the way it should. I’m hoping to have an edited video by Wednesday for publishing but it may be Friday depending on how tomorrow goes.

Now looking back at my complaining I’m going to re-write this post:

Wow! We are already 2 months into this year and things are going great. I’m finally getting into the swing of things at work after having been there for 9 months. I’ve been doing a good job of bringing my wife flowers regularly and the flow with 5 people in the family is starting to feel right. As you know I have a few huge goals this year and I’m really on target for achieving them.

First and most exciting – Haley’s book “I’m Not Weird” should be going to print this week! It’s extremely exciting. I’ll post a button for sale on the blog as soon as I have firm dates. I’m also excited b/c she is already lined up for an interview with Deb Ingino from MyWiredStyle.com who has created a wonderful program that helps families learn all the personalities and how to interact. We also have some hopeful meetings set up to publicize the book which really is a must read for every 4-8 year old. The book helps children understand Cerebral Palsy specifically and differences in general. I’m very excited for where this book will go. I’m creating a mailing list for when the book is finally launched. If your interested in joining please complete the following form.

Secondly, I can’t believe I’ve run 14.5 miles this past week. I ran 6 miles last Saturday, 3 miles on Wednesday and then 5.5 miles on Sunday. That’s 14.5 miles in a week. I still have a long way to go before my 1/2 marathon at the end of April but I just might be able to make it there. By the way you can read about my training on the comments at Intrepid Runner.

Finally the DADvocate Project! What an exciting project. We’ve had 100 people complete the survey which means we are 10% of the way there on the survey. This weekend I completed my first video interview. The interview was with Drew Bennett of BenSpark.com and founder of “I’m Not a Famous Blogger” fame. Drew is truly awesome and I really enjoyed the interview. I hope I have the opportunity to meet him in person some time soon. On top of this exciting news I will also be interviewed by the Geek Dads Weekly and Cast of Dad’s pod casts in the next few weeks. Things are going awesomely and after completing The DADvocate Project blog redesign I’ll be making my next moves reaching out for sponsors, and trying to do some traditional PR. I’m also thinking about asking the mommy blogger’s to mention my work in their circles.

I have had a technical set back this week which will hopefully be fully resolved by tomorrow. In the meantime it is pushing back my ability to publish the interview with Drew. Look for it sometime between Wednesday and Friday. Sorry I can’t be more exact but I’m not out of the woods yet with my tech issue.

Thanks for reading this blog and following our progress on the DADvocate project. We appreciate your input and feedback and love your comments. Feel free to post here or on any article on this blog. I do my best to respond to all comments so thanks again for reading and participating.

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WOW! things are going fast now. Today we received the layout of Haley’s new book and I’m very excited to see it come to press soon. We already sent back our edits. Hopefully Publish America will make the changes tomorrow and we’ll go to printing this week. I’ll keep you posted.

We had a number of users take the DADvocate survey this week too. I hope to get all their answers into the spreadsheet I use to build the data tomorrow so I can get more current statistics. The drawing for the MyWiredStyle.com will be held tomorrow.

Finally we had more people take the survey this week than we have yet. The numbers are beginning to excellerate and I’m very excited.

Here is a quick video interview I did with Haley about her book.

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We just changed insurance providers again at work. This is both good and bad. Today we learned that Haley will receive 60 therapy visits per year which is awesome the previous provider only provided 24. But we also learned that the our in network co pay is $50 per visit. This isn’t a big deal when we have the supplemental insurance provided by Medicaid with the deeming waiver but if we were to lose the waiver we could have a mountain of expenses. I’m specifically concerned about this summer when we take on the operation and post op therapy. Haley will have daily therapy this summer after the operation. So we would owe $350/week if we lost the waiver. That would be scary. Hopefully the waiver will renew.

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My daughter is in first grade and she is six turning seven. My first clear memories are of that age. I don’t remember much but I do have a number of vivid memories from my first grade year. Here are a few memories:

1) Jennifer Wolaver(SP) – Jennifer was the girl who chased all the boys around the playground. She was trying to kiss them. All the other boys ran, I didn’t!
2) Dyslexia – I really got that there was “something wrong with me” I couldn’t keep up with the other kids in class and I was being taken out of class for extra help. I remember feeling bad about these things.
3) Dominic Mastri – I was having such a hard time in school that my parents felt they should find a private school for me where the teachers could provide more direct attention to me. I went the visit the Children’s Learning Workshop, a Montessori school. While I was there I noticed a kid who walked on his toes and crossed his feet. I asked someone why the kid was walking that way to get attention. The other child explained that he couldn’t help it. I don’t think I was told that it was CP at the time. I became good friends with Dominic and we are still friendly today. He is a Public Defender in Scranton Pa.

I don’t remember too much else vividly but as I sit here writing these word I wonder what Haley will remember when she is 34 going on 35. I’m sure she’ll remember the book she wrote which will hopefully be available before the end of the school year. I think she’ll remember doing Saturday’s with Daddy and Haley which might become content for this blog. I hope she’ll remember this past weekend where we went to Snow Mountain in Ga and played all day.

What do you remember from when you were six? What do you hope your kids will remember?

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Last night we, Haley and I, had the opportunity to interview the Army’s Disabled person of the year. Brook Larabee is an awesome person and was a true joy to get to know. We had quite a bit of additional conversation after the camera was off. She travels regularly, is very active and a genuinely great person. I hope you enjoy the video.

Army Disabled Employee of the Year from Kevin Metzger on Vimeo.

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I’m very excited. I have the opportunity to interview a very special person on December 17, 2009 18:00 or 6:00 PM ET. The person is the Army’s employee of the year. She lives here in Ga and her sister lives in our neighborhood. So not only will we get to interview her but she is going to come to the house and my daughter will get to meet this wonderful person who has not let her disability get in her way. I’m very excited and I can’t wait to meet Brooke Larrabee. I’ll be broadcasting live on Ustream. We’ll send the details soon.

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We have decided to do the Rhizotomy this coming summer and have tentatively scheduled it for late may. As I  mentioned in my previous post Rhizotomy – Surgery is never an easy answer, surgery is never an easy answer. We saw Haley’s orthopedist today and he explained that the surgery will help make it easier for Haley to get around, run, an not get so tired after she has gone through the healing process, but it is likely her legs will still turn in and we may want to correct that at some point in the future. He also says that it is still possible we will want to do a hamstring surgery some time in the future. I guess even though we will make big progress with the surgery next summer we will still have a long way to go. This is all good stuff to know before going into the operation since it will allow us to go in with our eye’s wide open. The other piece of valuable advice he gave us today was to get on it now. Now is the time for Haley to start strengthening her core and stretching so when we have the surgery her recovery time will be decreased. I’m going to lay out a bit of what we are doing here for me as much as for any readers that might have to go through this in the future.

DONE:

1. Pray
2. Saw our dr’s both in Atlanta and St. Louis.
3. told to contact Dr. Park
4. Given information to create a video for evaluation – We didn’t have to travel back to St. Louis for the evaluation.
5. Had one of our therapist help instruct Haley so she did all the movements that video requested.
6. Sent video to Dr Park’s office
7. Pray
8. Started scheduling the surgery for summer of 2009 got pregnant with 3rd.
9. stoped all procedures
10. Had baby Oct 2009
11. Contacted Dr Parks office and scheduled surgery for summer 2010.
12. Pray

TO DO:

1. Pray
2. Contact insurance company to find out what they will cover the operation
3. Find out how much additional therapy insurance will cover pre and post op
4. Develop a home therapy program that builds core strength prior to surgery
5. Pray
6. Document Haley’s current movements on the blog to help other’s see the improvements the surgery provides.
7. Work daily with Haley on PT program prior to surgery
8. Pray

Somehow I think I’m missing a lot. I’m hoping some folks who have gone through this before will stop by and give us some pointers. I just want to be sure we have all our ducks in a row.  If anyone does stop by and read this please let me know what kind of therapy you were able to get from your insurance companies post op. I’ll post conversations and references as I get them.

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I’m excited because the publisher for I’m Not Weird reached out today and said they have everything they need to move the book to the next stage of production. That means we have gathered all the releases they need and they now have all the materials. The next step for them is to layout the book. I’ve been told that this process along with cover design will take about 2 months. Then the book will be ready to go to production. Very excited for Haley.

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