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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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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Haley got a lot of exercise while we were there swiimming,and climbing stairs both good for her core and leg strength.

I also want to acknowledge how awesome our friends are. They have already started organizing a care schedule for when we return from the surgery including helping to watch with the children and bringing dinners. It’s so much more than anyone could ask for and they are truly wonderful.

Since Haley isn’t the only child I do want to give two short updates on the others. Acording to Abby the water in the ocean is spicey and it makes her lips sparkely. Issac is really sitting up and is now in highchairs. I can’t believe it but it is even going faster with the third one. I wish I could slow it down.

Finally, and this has nothing to do with Haley or the surgery, we got new phones last night, me for my birthday and Mel for mothersday. We are now in the smart phone age. I’m blown away by the phones. They are Android based samsong phones. I like them much better than the iPhone because 1 they are much cheaper and 2 they integrat with so much of your life through google seemlessly. I also want to take a moment to thank everyone for the birthday wishes.

Update: Well we had switched to the Sprint network and unfortunatly it did not work in our house or in my office and I found the Andriod phone to be very buggy. So we are now on At&t and have iPhones. They really are easy to use and there really is an app for that.

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Progress Report – Three weeks left. We are still doing exercises regularly and I will problably video some of them along with some walking over the next few days. This will give a good before picture of how well Haley is doing and help to show other parents how the surgery affected her. 

If you happen to be a parent who has had to make a tough decision about a surgery like this please feel free to leave comments and feedback. I really do love to see comments and try to respond to any that are left of the blog. It’s great to get additional insight from people with different backgrounds.

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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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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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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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