Dr. Park is Haley’s doctor here in St Louis who performed the surgery. Yesterday she told him that he is the best doctor in the world. I really liked his response to her.

“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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it’s been a long and exciting week here in St. Louis. It’s hard to believe we’ve been here for a full week and yet last Saturday feels like a life time ago. I really miss Abby and Isaac and can’t wait to see them again tomorrow. Haley is doing awesome but we have a long road ahead. Her back still hurts when we move her but other thN that she generally feels pretty good at this point. She was a real trouper the whole time. another little boy who had the operation the same day as Haley came out of it screaming and crying but Haley mostly slept for the first three days and when she finally came out of the hAze she felt okay.

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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I was goging to write yesterday but my wife sidelined me with wanting to post on CaringBridge. I don’t know if you would like to follow what Mel says over there the url is http://www.caringbridge.org/visit/haleymetzger.

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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I’m not sure if this title of this post sound optimistic or ominous. It sertanly contains elements of both for all of us involved. I’m not going to take the time in this post to explaine everything about SDR. Most readers know whats going on and if you don’t I’ll include a list of posts at the end of the email that you should check out get a full history.

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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This past week was really pretty amazing. We took a much needed vacation at the beach. It was good for everyone. We all got our minds off the surgery at least for a little while.

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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I started writing this blog yesterday and was filled with trepidation. You see our friends that had participated in the stem cell study have found that they are having great success. I even talked to a few other parents who participated in the study who are also having great success. Unfortunatly or furtunatly there are no other ongoing studies that we could get Haley into right now although I believe we could get the same treatment if we pushed hard enough and went to Mexico. That said there still has not been enough study on this therapy to validate 1) that it will  help Haley, 2) that the effects of the therapy are long term, 3) that there will be no longterm side effects, 4) That it gives Haley the best chance right now. Still the results that the parents who participated in it are seeing are increadible and make me very hopeful for the future of this treatment option.  As for us with the sound thinking of my wife who helped me think through the above four points, we believe that the SDR while a difficult surgery is still the best treatment option for Haley right now.  The one thing I needed to know in addition to the above facts is; Will she have longterm loss of feeling if the stem cell treatment does become an available option?  The short answer is “No” there are 5 major dorsal nerves with many nerve rootlets. The surgery only severs some of the rootlets on some of the dorsal nerves. This creates for initial sensitivity loss or initial hyper sensitivity but over a short time the brian adjusts and there is no evidentual loos of felling over the long term for any patients that have had this surgery.  So there you go.

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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