I’m one of the board members of a new non-profit called Let’s Cure CP. We are still very much in the startup phase and I’m very excited about our mission. We are the first and only organization focused on raising funds for research on Cerebral Palsy. There has been a small movement and a number of studies that have been executed over the last few years using stem cell research that have produced some very compelling results but there is very little funding dedicated to CP research. Most organizations related to CP are focused on awareness which is necessary but with the compelling clinical results we need to focus on funding the research.

Speaking of clinical results, one of the founders of Let’s Cure CP participated in one of the most recent studies that began clinical execution back in March. The founder’s son had an adult stem cell transplant using stem cell’s extracted from his own bone marrow and injected to help with the brain. I don’t know if it is actual cell regeneration or has some other function. I do know that I spoke to the founder today and was told that the son is doing increadibly well and starting to advance rapidly. He has improved three reading levels since March, is doing better physically and is doing better overall in school.

The founder also told me that the clinical group who participated in the study has been staying in touch. One of the boys who participated in the study was very similar to Haley and actually told his dad that since they went to Mexico for the study he feels like things are easier and has more energy. That is a profound statement comming from a high functioning boy with CP.

So this raises a question: Should we continue with our plans to have the SDR?

I’ll state right away that we do not have enough information right now to make that decision yet but, I have been prompted to look further into this adult stem cell transplant. I’m going to be following up with some of the other parents who participated in the study and look to see if there are any real options to do something with Haley in the near term. But there are some real questions.

Cancer – From what I know (very, very limited) There is less risk with adult stem cells then there are with embryonic stem cells. That is good but quite honestly I’m not willing to accept much risk in this department and the oldest studies with this type of application in patients with CP is approximatlyfour years old. I need more info on adult stem cell transplant in other other areas of treatment.

Costs – I work for a company mainly to have insurance for my family. Haley is not currently eligable to get insurance independantly. All this is likely to change over time. Befor the recent changes she would have been eligible at 21 for indipendant insurance with the new changes, who knows? That said it will be very expensive to do this type of treatment and it would not be covered by insurance. That means we would have to find a way to pay for it and it is not feasible that I could earn that money quicly, but there are other options such as fund raising, grants, and angles who have an interest. That will take a lot of work and some time to figure out.

Timing – We have a very short window to make this decision in. I don’t like making decisions like this without putting full thought into it. I really need some educated feedback and thoughts from others about what I need to ask and should be concerned about. If this was your child what questions would you ask. What would you want to know. I don’t want to leave a question out because I didn’t have time to think through all possibilities and I don’t want to make a rash decision.

In the end it may be best to continue down our current course of action. Putting off the SDR for another year is not desirable at all. The only reason to do that is if we believe 100% that this new treatment is a better and truly alternative option. The fact is I just don’t know right now.

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I’m going to try and be a little more active on MySpellingSucks again now that I have The DADvocate Project going smoothly. It’s been a while since my last post here but I’ve been working hard getting the other site up and running. In addition to The DADvocate Project I’m also writing at Dad-O-Matic and a new site that I’m one of the founders of dad revolution. So you can see I’ve been busy but I’ll be blogging here at least twice weekly going forward. You should see a post on Tuesday and Thursday every week for the foreseeable future. Tuesday posts will be a countdown post. Cp I just put Haley to bed tonight and she is really starting to get nervous. More of night time conversation focuses around the surgery. Tonight she was mad at me for rushing her and while I was giving her a bath she made a comment about having another dad. I told her I am the best dad for her because I was picked to be her dad and that I want the best for her. That stopped the smart alack conversation but when we got out the bath she commented.”

Haley understands that things should be easier for her after the surgery and the work to get better but she is still nervous. During our exercises and stretches she commented on how some things would be easier but then when we were laying down she started asking about going to sleep and the actual surgery. She was under the impression that she would be asleep for a long time and the surgery would take over night. She is really scared that we won’t be able to be in the surgery room with her and asked me to ask to be in the room during the surgery. I told her I would ask but I really hope they don’t agree to let me stay in. I will if the do but the idea honestly scares me. So tonight I explained that the surgery is only four hours and that helped. She asked me to help her calm down when she got upset and I think I did by hugging her but I honestly don’t know what to say. I’m afraid to tell her I’m scared too because I feel like she needs me to be strong and confident. I tell her it’s okay to be scared though.

Earlier this week Mel went through some of the same emotions. She was scared about the possibilities of the surgery and was trying to push them from her mind rather than accept the thoughts. This made her feel like she was going crazy because the thoughts wouldn’t stop coming. When we finally talked about it and she acknowledged the thoughts everything seemed to ease up.

Me I guess I just needed to write to get some this down and some of the thoughts off my chest. This is one situation where I really miss my dad. Unfortunately I don’t think he would be able to have a conversation about this even if we were talking right now but I really wish were. I hate everything that’s happened and I don’t feel like I have a trusted Male source to talk with about these things anymore. It honestly is very difficult. I miss my dad and I really do need to know that I’m making the right decision and I need to be told to be tough but instead all I have is my faith. Please God don’t let me be wrong on this one it’s way too important.

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The idea of surgery for a seven year old is very difficult. Today Haley made a couple of big decisions and I can’t tell you how proud I am of her for making them. We have been doing stretching off and on for ever. More recently we have been doing stretching and core muscle exercises more consistently but we are still not very consistent. Today when we were getting ready for bed I said we should do stretches tonight and Haley said yeah. She then said I think until the surgery we should probably do stretches every night even if I don’t get to have stories. We’ve read stories to her every night since she was a few months old. I was so proud of her for making that decision. It’s much better than the ones I’ve made related to running lately at least I got out tonight.

After we did our exercises and we were laying down we prayed that God would make the surgery and the recovery easy. We also discussed the idea of hard work to make something easy. She was actually telling me that she told her PT she would look back and be happy she did this and I explained about the word perspective. Some times I’m very much like my dad but one of the things he taught me very well was that it helps to have the words (vocabulary) to explain your thoughts and emotions.

After that conversation we got on the topic of how they would put Haley to sleep. She said “so they will just give me a pill and I’ll fall asleep and then they’ll take the pill back and I’ll wake up.” It took me a little while to figure out what she meant but once I understood I explained about IV’s and how they would leave it in but stop putting the medicine in it. They would still leave the IV to give her water and nutrients because she would not likely feel like eating after the surgery.

Lastly we talked about the surgery room. She has realized that we will not be in the surgery with her. I think I managed to communicate it to her without upsetting her too much. We started with saying we will be there when you go to sleep and when you wake up in answer to her question of you’ll be there the whole time right? She finally decided to ask about how we were saying that we would be there and I explained that doctors would not likely let us in the operating room because we are not doctors. She basically took that idea and ran with it.

She is a bright kid I know she do well but I’m praying for her every day. I can’t help it I’m just a little bit of a nervous dad.

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I almost missed it. Today is the 1st birthday of the MySpellingSucks blog. My last year has been incredible. I’ve met many new friends because of blogging and social networking. Blogging is more than just a picture and a paragraph. It’s about defining your life, who you want to be and taking the steps to get there and it’s about finding people who want to do the same things and are taking the steps to make it happen. I didn’t know it when I defined the release date of the new web site for the The DADvocate Project, but apparently the release date is a birthday present to me for blogging semi consistenetly for the last year. That said I should talk a little about the future plans of both blogs here.

MySpellingSucks – This site was started as a blog to discuss my(our) challenges raising Haley. Even though the blog has stayed true to that it didn’t take long to realize that I like talking about (both, now all) my kids. Oh Yeah, I predicted yesterday that Isaac would be sitting by himself. I told my wife he can do it he just doesn’t know it yet. Today he is sitting. (ADD). So this blog will pretty much continue to discuss treatments for Haley, challenges we have and try to stay focused on CP, ADD and Dyslexia. I’ll of course continue to tell the occasional family story and continue to find inspirational stories to tell about folks who overcome diversity. Let me know if you know of any stories worth checking out.

TheDADvocateProject – As any regular reader knows I was awarded the East cobber father of the year for a story I wrote on my blog. That made me think about all the men who are working hard to be a dad and how things had changed since we grew up. They have and they haven’t. I know the concept of work-life balance started coming into vogue in the early 90′s but it’s my generation of parent who grew up understanding that companies could give a flip about their employees because their responsibility is to the stock holder. So I think we have taken a different approach to life and engage on the home front much more so than our fathers did because we don’t feel the same loyalty to give up our family life for the gold watch that never comes. The DADvocate project will have 3 posts per week and will provide a monthly news letter. Post will go up Monday, Wednesday and Friday. To learn more about the project and check out the new site head over to The DADvocate Project.

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I was really excited to do this Podcast because Chris Jordan has quickly become a friend over the last few months. Chris is a local insurance agent and provides internet marketing consulting for the insurance industry. Chris is “Atlanta’s Only Live Insurance Agent” and you can find his consulting firm at The Agency Edge

Oh by the way did I mention that Chris is also a stay at home dad. What an incredible guy. He was even featured on INC.com as a work from home DAD.

It was an honor to interview Chris I enjoyed it and I hope you do to. As always I’m interested to see what you thought about the interview both good and bad. Do you have suggestions for other questions? Let me know and I’ll do my best to include them in future interviews.

You can find the podcast via iTunes and don’t forget to leave us a rating.

Oh Yeah one last thing. This post is brought to you by Fatherhood Friday. Click on the badge below to visit other Fatherhood Friday stories.

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A few weeks back I wrote a post on DAD-O-Matic called Panties and Business. It was a great little post about learning tenacity from teaching my child about potty training. The unfortunate thing is I posted this picture not knowing of the foreshadowing that it implied.

So a week or two after the post we had a busy weekend and Mel was freaking out because we had so much to do. I always the calm and collected (not) one said listen all we have to do is divide and concur. You go to Costco and I’ll take the kids to the grocery store. Mel looked at me laughed and somewhat snarled. “You!” “You take the kids to the grocery store?!!?” “By yourself, are you crazy!? You can’t do that!” Mel pretty much refuses to take the kids to the grocery store by her self because it is a big deal, but I’m an optimist and decided it would be a fun adventure. Boy were we both right.

I got all three of the children to the store, inside and we were shopping nicely. It was going fantastically well and I honestly couldn’t figure out why Mel felt like it was such a big deal to take the kids. I mean yes, they ask for everything and slow down the process a bit but that is to be expected. We got through almost all the items on the list plus few extras due to “Daddy can we get this? I just love _______.” AND THEN …..”Daddy I have to go to the bathroom.” Says my middle child.

Hmmmmm

Daddy says: “Haley can I have you take Abby to the bathroom while I wait outside the door with Isaac?”

Haley says: “Yes, Daddy. I can help.”

We go to the bathroom and the girls go inside. I’m standing there at the door and all of the sudden I hear crying only it’s hysterical so at first I think It’s laughing. Then I hear Haley yell “HELP! HELP! HELP HELP HELP!!!” So I burst into the woman’s bathroom, thankfully there is no one else in there. They are in a stall and I go to open the door but it’s locked and they are both crying hysterically. I slam the door. I slam it again and it open. Isaac is out in the hall and I’m worried about him but I still haven’t figured out what’s goin on and then I see it.

Abby has fallen into the toilet. Her head, arms and feet are sticking out. Her face is all crying and freaked out and Haley was all concerned because she felt responsible. Unfortunately I didn’t think quickly enough to snap a picture before rescuing Abby from the potty, but the pic above does somewhat encapsulate the expression on Abby’s face.

Needless to say when I told my wife about this incident she said “See it’s not that easy is it” after laughing at me of course.

Now regardless of this crazy trip to the grocery store, it won’t deter me from going again with the kids because who knows what kind of story I’ll get out of my next trip.

This post is brought to you by Fatherhood Friday. Click on the badge below to visit other Fatherhood Friday stories.

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