So what prompted me to write tonight was sitting down at the computer. Haley had left her profile up and the letter she typed today. I thought I had mentioned this in a previous blog post but I can’t find it now….prior to the surgery Mel, Haley and I took a little trip up to Gwinnett and met a boy who had had the surgery when he was three. His involvement was slightly different from Haley’s but they are similar, and they are the same age, and I think Haley really enjoyed meeting another person, a boy, who looked and moved similarly to her. It turns out the boy needed to have a surgery this summer too and he just had it the other day.

Haley decided to write a letter to him. It is up on my computer now and I’m going to save it so we don’t loose it but while it’s not the first letter she has written it is the first letter she has written to a boy. It’s interesting as it reflects a question spelled by her “cweshin” from her experience with surgery =”can you walking or no?” and a hint of excitement “my mom thinks we mite see echoth agan soon.” I have to admit that I find it fascinating that Haley was compelled to write the letter and connect with someone who is like her and going through the same things.

By the way Haley has recovered from the surgery and is doing so incredibly well that she has even developed a 7 year old mouth calling me a “Know it all,” telling us she hates us and wishes she had another family and the other typical seven year old stuff. I think we’ll be in for a long year but I’m excited to see how she develops her independence she’ll have so much more freedom to do so because it will be easier for her to keep up. I think she’ll feel she’s struggling at first but it won’t take her long and she’ll be rocking along with the rest of the second graders. Of course there be some struggles but that’s to be expected.

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The other thing that is pretty neat and I didn’t realize is The DADvocate Project is starting to crawl too. We have hit some major goals this week and we are going to put on a big push in July with the intention of doubling the survey participants but I want to take a moment to reflect on the project time line.

March – My son is conceived and I decide to start a blog. The two are not related. The blog doesn’t actually get started until April.

Last year Father’s Day – I had no idea there was a daddy blogging industry I had simply started a blog about my ADD and Dyslexia and my Daughters CP. I was just getting into social media, and I was enjoying writing. I wrote an article for which I was awarded father of the year. My Son is Incubating.

July – Last July I wrote 11 posts and published 10 of them. I still have one in draft form. I hadn’t yet thought of The DADvocate Project but I did write a post on breaking down goals. In another post I wrote about telling people to be happy and how my then two-year old had just figured out how to change my mood by smiling. It’s funny the project I worked on last July and blogged about in my last post of the month gave me the basis for conducting this project. The interesting thing about that post is me asking myself if I could pay someone to do the data crunching. I couldn’t for that project. I tried to pay someone to do some data crunching on this project but they gave me crap results back so I’m hesitant to try again but it may happen. My Son is Incubating.

August – The idea for this project began to fester on my way home from Home Depot. I thought about the term DADvocate and formed a definition in my head. DADvocate – someone who is a dad first, who cares about their family and works to make it strong. A man. – Mind you I still have no idea there is such a thing as daddy blogging. My Son is incubating.

September – I’m really playing with the idea of The DADvocate Project. I’m starting to float it to others and see what they think. I tell my chiropractor about the idea. My son is getting closer.

October – Issac is born. I write this prayer for his bris. A few weeks later I receive the card below in the mail. It’s from my chiropractor.

November – I decide I have to go for it and plan a soft launch of the DADvocate project for Thanks Giving. I initially reach out to all my friend on Facebook and begin to use twitter like a tool to reach people. I also attend my second and third tweet ups where I begin to tell people I’m doing this project. The DADvocate Project is born and I don’t sleep at night because the new baby.

December – I meet my graphic artists @havanatweets and one of the worlds best networkers @TarynP. Taryn is interested in my project and tells me about Dad-O-Matic. I decide to go for it and reach out to Chris Brogan to see if I can join his site. Chris kindly re-directs me to @Paisano and I become a contributor.

Jan – I have some problems with the survey in the first couple of months and switch from a Google Docs form to Surveygizmo. The switch was a good idea but I still have problems with merging the data. Isaac is beginning to sleep longer.

Feb – I engage Havana to do my graphics work for the DADvocate project. She is awesome to work with and together we come up with a great brand. I get thesis and start to put the site together. I also migrate a ton of posts and data. At this point I had gathered around 100 survey participants. I had also started to become friendly with Drew from benspark.com and had to interview him multiple times because of technical glitches. Luckily Drew is great guy and good sport and I consider him a friend today.

Mar – The new site launches. I join Dad Revolution. CC Chapman mentions the project and I get 25 survey participants in one day. We are now sleeping through the night and getting some smiles from the little guy.

April – In April the word began to spread and I was interviewed on CoachRadio.Tv – Isaac can sit up now.

May – We do an interview with High Velocity Radio. The DADvocate podcasts get in to full gear but I take a vacation in early may at the beach, and we Have Haley’s operation at the end of may. We are trying to push hard on the project but we also have a life and work outside of the project. I feel the project slow a little at the end of May. Isaac is on his hands and knees. He is trying very hard to crawl but not there yet.

June – Isaac is beginning to push him self forward but you really can’t call it crawling. It’s more of thrust and fall forward until you get what you want. I kind of feel The DADvocate project is doing the same thing. It’s moving forward one thrust at a time but I just haven’t quite gotten to the crawling stage. The Podcasts are going well and I’m invited to speak at the Modern Media Man Summit. I was highlighted by @tessasdad on SAHDinLansing.com. Things are going in the right direction and I’m thrusting and falling forward but I’m not quite sure that I’m crawling yet. Then the last week of June arrives and Isaac begins to crawl . I interview Dad of Diva’s and he suggests an all out daddy blogger approach. I decide that July will be my month to really start crawling.

July – Today is July 1st. Your reading this on my blog, received it as a news letter, read it on Facebook, or Linked In. Saw a tweet and fond the article. At this point we have reached 202 survey participants and the 12th DADvocate Podcast will be posted tomorrow. If you’re a dad blogger, It’s likely I’ll be reaching out to you and asking if I can post a guest blog this month. If you are someone who has taken part in the survey I’m asking you to leave a comment on this post about what you like about participating in this project. Finally I’m upping the ante. I have an ongoing contest that when I reach 1000 participants I’m giving away an iPad. Well I think an end date is necessary to encourage participation. I’m going to give the iPad away on August First assuming we reach at least 100 more survey participants this month.

If anyone has any ideas for promoting this project I’m all ears. I’d love to be interviewed on any podcast, radio, or tv show. I’m happy to participate in any blog, newspaper, or magazine interview. I want to spread the word as I feel that the work we are doing is going to help change how people look at fathers. This work, you, your answers and interviews will show exactly how Dads are active and participating in their lives of their children.

Finally if you have not participated in the Survey yet and you’re a dad Then WHAT ARE YOU WAITING FOR. GO DO IT NOW! Participate and leave your contact information at the end if you want to be included in the drawing for the iPad.

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I was not brought up to be competitive in sports. My dad perhaps afraid of what he could be like if he let himself go was reserved in encouraging us to compete. He was a skinny athletic guy who said he was never good at sports but I think he may have been. I also think he was probably pushed to compete when he didn’t want to and he was afraid of doing the same thing to us.

My dad also liked to workout but he never wanted to work out with me. Working out to him was all about working hard and there was no social, or fun in it. As such I think I hated working out for a long time because I thought it had to be hard and work.

Recently Haley competed in a swim meet. She participates on a swim team for kids with disabilities. She really enjoys swimming and is quite good at it but she is slow. At least she was before the operation because she was fighting with her self to kick in spite of her spacticity and had to remember to move her arms at the same time. When she competed even in the disability league she still came in last or next to last and believe it or not they were actually handing out ribbons. I have no problem with this and they were giving ribbons to all the kids but they said the place they finished so the ribbons did indicate how well they swam. My daughter didn’t particularly pay attention to her placement or how she swam compared to the other kids. She was just having a good time which is great. But sometimes she asks “why are things harder for me”, ” Why am I always last.” Right now she really wants the results from the operation to help her run at least as fast as the slowest boy.

So I’m watching this swim meet and reflecting on my thoughts on competition, how I was raised in respect to competition, what I think about competition as a direct result of how I was raised, what I think about competition in respect to my goals of running a half marathon, and I realized that I really don’t know what to tell my daughter about athletic competition. And then I realized that I do or at leas I think I do…

1) Sports are important. They are social and keep you healthy. They are a fun way to work out.
2) Some folks are into competition in sports and that’s cool. Sports is one area of life where you can compete with others but they are not all about competition with others. Sports are about doing as best as you can and being your best. You can compete with others but there will always be someone better and someone worse. That isn’t a reason not to compete and your toughest competition should always be you. If you work your hardest people will want to keep playing with you and they will help you do your best.
3) There are other areas of life where you are going to do better than other people and you want to help and encourage those people in that area of life who are trying to do their best, just like you want to be encouraged where you are trying your best.
4) There is no reason you can’t work out with friends.

Oh yeah and one more thing. My daughters ask me if they could run with me tonight before I was leaving to go. So I promised them that I would take them on a run tomorrow.

What do you think? Do I have the right perspective? I’d love to hear your thoughts.

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I have to start by saying that the operation was a huge success for us an I can say that confidently, eventhough we are still in the recovery stages of the operation. As I mentioned in my last post Haley recognizes how much easier things are and is excited about the possibilities. As a parent I can see how much easier moving is and I’m Amazed at how quickly her strength seems to be returning. this week she started walking independantly within the house. As she gains confidence I think we will begin to leave the walker at home. So I can safely say that if your child is moderatly imparied then this treatment is awesome. That said, we chose to have the best most experienced dr in the country do the surgery. He makes a smaller incision than any other doctor and takes less bone. he has performed close to 2000 of these surgeries successfully and while I know there are other dr thY perform this surgery I wouldn’t recommend anyone other than Dr. Park.

Now that you know I think the sdr is great, I have to say that I’m positive the results of the surgery are different for every child. I spent a lot of time on the Internet looking for pictures and video of other children that had the surgery. I tried to look at how they moved befor and after and I looked at how they moved compared to my daughter. I pretty much came up with a mental composit of how Haley would fair after the operation. it turns out that I wasn’t far off. I believe this is a great exercise if your considering the operation. It helps you to see the “why” in the decision. Oh yeah we also got the opinion of every theripst, and multiple doctors. Not everyone agreed that we were making the right decision. Some of those people we have a ton of respect for and know personally much better than the Dr who performed the surgery. In the end it comes down to 1) it’s your decision as the parent and 2) how agressive do you want to be as a parent.

finally I will say that after I spent all that time doing my part and made the decision I did pray that it would be the right one.
IT WAS
IT IS
THANK G-D

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Haley is doing extreemely well and recovering quickly from the sdr. She woke up before I left for work today and was sitting the stairs talking to me after having dressed herself. I told her how proud I was that she did that and she told me that it is much easier for her to dress now because she can move her legs more easily.

I can’t really explain how good that made me feel. When we made the decision to do the surgery we knew it should makenthings easier but we did not know how she would feel about it. Her validation today that things are easier for her means a lot. As is there are some things that are harder like she still cant walk independantly yet but I think she sees the progress she is making daily and understands that it just takes some time and practice.

I do have some videos and pics that I want to get up on the site but I just haven’t had time to put them together and edit them. I’ll post that stuff soon.

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“No, just the best doctor for you just right now.”

There are two things I loved about this conversation 1) Haley already recognizes the bennifit of the surgery eventhough she has lost a lot of function 2) dr park is the best surgon in the world who performs this surgery and yet he gave what I felt was a humbel responce to Haley.

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yesterday we had our first PT (physical therapy for the uninitiated) session and learned how to transfer her to her chair then we had a second session in the afternoon where Haley learned to roll over again. We also went through all the streaches we are susposed to do with her. Today we had two sessions of PT. In the morning they went through the streches with us again having Mel and I demonstrate our knowledge and ask questions. Then we stArted going through the home exercise program. It is quite extensive and is to be performed in addition to the therapy program. In the afternoon Haley got to her hands and knees all by herself. it was awesome. She also did some asissted walking and then played in the ball pit on her hands and knees looking for frog beanbags. Then she wanted to go o. the therapy swing so she crawled over to it. My daughter has increadible determination and I’m proud of her for it.

Today we also took a few trips to the roof top garden here T the hospital. It is absolutly gorgous and delightful to visit. Haley enjoyed it from her wheelchair Nd took more time to look at the different colour flowers than she would have befor the surgery. I don’t know if it was the wheelchair or just the desire to stay out of the hospital room which was making us all clostephobic. Haley also enjoyed the playroom here at th hospital. she played in the kitchen, played karyoke and painted. Overall it was a pretty fun day even if there was de pain to accompany it. well write more soon and post some pics and video when I’m on something other than an iPhone.

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Righ now I am sitting in a private roome reserved for us during the surger. It’s amazing that we have this private room and they call us every hour during the surger to keep us updated. they were susposed to call us when the surger began but i don’t know if they did because the phone was turned all the way down. Anyway my expectation is that they have started and probably already are in her back at this point. I hate thinking about it but I know that things will be much easier for her after the surgery is over.

Yesterday we met with Dr. Park in the morning and spent about 3 hrs being evaluated, haveing x-rays, and going through therapy. Dr. Park gave an excellent review about what he expects Haley to be able to do. He expects she will be able to run, jump, sit and walk more freely and fall less. He was very complimentary of us saying that he would expect in a child like Haley he would have expected to see her much more bent in the knees. He said it is due to the therapy and us that she is doing so well. That made us feel good. He also predicted that by the end of the month she should be back to her current level.

Later in the day my daughter visited a specialist up here named Dr. Brunstrom. She is a neuroligist who has Cerebral Palsy her self. She is also the medical advisor to the non-profit Let’s Cure CP. Unfortunatly she thinks the recovery period to reach Haley’s current level is four months. I’m an optimist and will work hard with Haley to make it sooner rather than later but the truth is we just don’t know. Dr. Brunstrom aslo said we would probably need to do another surgery in the next 3 -4 years where we extend the hip socket join, rotate the ball in the hip socket, and cut and rotate her feamers. We’ll have to see how she recovers from the surgery and not worry about it until after we recover.

They just called to say the surgery is starting, she has already been back there for an hour. I’ll write more later

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On week from today I will be sitting in the waiting room waiting, while my daughter is in surgery. We have doen a lot of work to get prepaird for this surger including nightly exercises and streches. We have planned for nearly two year for this surgery because we had to delay it when we found out Melanie was pregnat last year. We have met with parents who have had children go through the surgery. We have talked with insurance companies to ensure it was covered. We have talked with multiple doctors. We have done everything we possibly could have to be prepaired for this and yet it still feel nerve racking. It’s nerve racking because there are other treatments on the hirizion that may actually be cures for CP. It’s nerve racking because there are risk. It’s nerve racking becasue I’m a dad. Honestly I would much rather take the place of my daughter but I know we all have our challenges in life and CP and this surger will be some of hers. I know that it is my job and my wifes job to be here to help Haley overcome this challenge. This is one of those life lessons where we learn that you can manage failure as long as you keep going because ultimate failure just isn’t an option. Ultimate success is the only option and so failing along the way is simply stumbling and it’s okay to stuble hell it’s even good to stumble. Stubling means your learning stumbling means your progressing, stumbling means your challenging your self and working to get better. Overcommign the stumble, getting back up when you fall, progressing, that is why we are here and what God has put us on this earth to do. God wants us to get better be stronger, achieve more, not just for us but for the world to make us better contributors to society and make a positive change in the world in a small and subtle but substantial way, simply but rising to our challenges and it’s with God’s help that we will raise to the challenges we are presented with. 

Below are the article I’ve written on Rizotomy in Chronilogical order:

• Rhizotomy – Surgery is never an easy answer
• Rhizotomy Next Steps
• Nervous Dad
• Countdown 4 weeks
• Countdown 3 Weeks
• Countdown 2 Weeks

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