It’s been three years since I last posted to this account.
This is my personal space and I’m going to start posting again in my style. I’ll be covering, My health, my home improvement projects and what I can of the family.
This is the reason I’m back on the blog and since this is my site it might get a bet personal, 2 years ago I was doing a daily boot camp. I did it for 3 months straight and then I got a new job that required a lot of travel. I had lost 40 pounds during those three months and felt great. The travel made it hard to eat right and to exercise. In my current position which I started a few weeks back my travel is now limited ad i can get into some normal routines. So it’s time to take life to the next level. I need to both kick but at work and loose some weight.
It’s been a tough day and tonight has not been much better. There are a lot of things about CP that I’m good at handling as a father. But there are a lot of issues that come up with Haley that while not directly caused by CP are likely influenced by it. One of Haley’s bedtime routines is asking a series of questions.
“Are you or can you go in your room?”
“Lights on Door Open”
“Are you going in the basement?”
“Are you going outside?”
“Do you have any meetings or conferences”
These questions are frustrating but I’ve grown accustomed to them. However now she is also complaining about being afraid all night. It’s 11:00 Pm now and she is still up. She complains about stomach aches, being scared, or anything. This feels all very controlling and I don’t know what to do. I’ve tried ignoring, her but she gets up. I’ve tried yelling at her but she doesn’t care, I’ve threatened to put a lock on the outside of her door but I’m not sure I can do that. This has been going on every night for nearly 2 months. I’M LOOSING IT!
I’d like to write about Isaac’s Fro or Abby asking us why Mel and I are the ones who get to give the choices, and I suppose if I wrote more regularly I would cover some of those topics.
Today March 31 2011 was a big day in my life. I decided to close the DADvocate Project Survey. I’ve been running the survey for over a year and today was the final day. I did not hit my original goal of 1000 dads but I reset my goal last month when I had only 375 dads having completed the survey and in one month some how I managed to get another 127+ dads to take the survey. If I had set a deadline originally and pushed I would probably have 1000 dads today but I’m very happy with the 500 and maybe I’ll get 1000 on next year’s survey.
Today March 31 was also the day we visited Dr. Bruce with Haley. Dr. Bruce is our ortho and he suggested another surgery. Haley was in the office with us as he was talking. I know she absorbs every discussion she hears so I was concerned. I asked if she had any questions for the Dr. She didn’t.
A little while later we were waiting to pick up her X-ray film and she started talking to me about the surgery. She’s scared and doesn’t want to have to go through another surgery. It’s funny even with the work we are doing with Lets Cure CP, at this point in her life she would still need this next surgery.This surgery will derotate her legs. I don’t know the details of the surgery yet but basically prior to her last surgery she had very stiff muscles. They caused her bones to grow in a deformed manner. This surgery will fix that. It will help her walk even better and long term will be good.
Of course that means going through another year where she goes into a wheel chair, then to a walker, to AFOS and finally back into SMOS. It will be a difficult recovery and I hate it for her.
I’m not much for blaming, complaining, or wishing things were different but I sure wish I could take on this burden for her. I hate that she had to deal with this again.
Today is National Cerebral Palsy Awareness Day. For those who don’t already know the origins of this blog are my children and my oldest daughter has Cerebral Palsy.
When I first started blogging regularly Haley’s Cerebral Palsy was much of my inspiration and it led to the 2009 Father of the year award which led to this blog which led to my involvement in Let’s Cure CP (LCCP).
LCCP is an organization that was founded to support researching potential cures for Cerebral Palsy here in the US. We were founded in April of 2010 and have already raise over $30,000 that is going directly to CP research. We have already commissioned two studies in the US.
Today I ask my readers to help support Let’s Cure CP by:
1) Joining our Facebook page.
2) Join our news letter at LetsCureCP.org
3) Buy a Let’s Cure CP Shirt in honor of National Let’s Cure CP Day.
I can just imagine the conversation I would have had with my dad had he known what I was going to do with my daughter this past week.
“Kev are you crazy, she’ll break her leg!” “Kevin, there are just some things that aren’t worth it!” Now honestly I don’t know if he would have said that but they would have been reasonable statements. You see this past week I took my daughter Skiing. Yes, that’s right the one with CP.
Actually I took both daughters and my wife but we left Isaac at home. My younger daughter Abby was very cute slid well a few times and decided that she liked drinking hot chocolate in the lodge better and we decided she would probably be the one who dresses nicely and sits in the lodge on ski trips when they get older. Haley on the other hand was awesome and enjoyed her time on the snow. In large part due to the awesome instruction from Nancy and Sam at Cataloochee Mt. in North Carolina.
On the first day Haley was on skis the whole time. It was very difficult for her as she doesn’t have the strength to hold her legs under her while on skis, but Nancy did a few things to help starting with putting little clamps on the tips of both skis that hooked the skis together. This helped and the Nancy held Haley from behind as they skied down the slop. Nancy did let Haley walk the skis up to the “Magic Carpet”- this is kind of like a rope tow but much easier. Haley was able to stand on the carpet pretty much independently after some help getting on. They Skied for about an hour took a break and then skied for another hour after which Haley was pooped for the day.
On the second day Haley worked with Nancy for about an hour again and then we got to work with Sam for a bit on the bucket ski or a sit ski. This was some really cool technology and Sam took her down hill with some pretty tight speed which really gave Haley the feel for what skiing is like. He also told me that it was pretty possible for someone to become pretty independent on the sit ski which is awesome. There is also a clinic at Boon Mt. next year where they train us how to use one together. I’m quite excited about that opportunity.
After the trip Haley and I were talking and I asked her about skiing. She liked it. I asked if she would like to focus on the sit ski since that would be easier for her and she responded with one of the coolest responses, “Dad I want to do both!”
She wants to be able to ski on her own legs and she had fun in the sit ski. She knows she’ll be able to do more in the sit ski but wants to work to do it on her own. I love the determination my daughter shows every day. She is always teaching me.
Today I posted an article titled “I Hate labels” over at 5 minutest for Special needs. I talk about testing for dyslexia and my experience and how it affected my self worth as a child. If your a parent dealing with learning issues please consider this unique perspective and try to talk with your children about the testing in a way that is positive. I hope you enjoy the article I Hate Labels.
It’s been a while since I’ve posted but it’s the new year so I want to let you know my plans for this site over 2011. Many of you know I keep a few blogs including TheDADvocateProject.com, Metzgerbusiness.com and now RoadToThin.com and Kevin-Metzger.com. Technically Kevin-Metzger.com isn’t a blog as I don’t post anything to that site and RoadToThin.com is a partnership with three other men. I also write at 5minutesForSpecialNeeds.com, DadRevolution.com, DadOMatic.com and soon the EastCobber.com. so you can see I’m quite busy. This site has lost focus over time and I had to think about how it fit into the other work I’m doing. Really this site and my work at 5MinutesForSpecialNeeds.com is very complimentary and I’ll be refocusing on issues related to ADD, Dyslexia and Cerebral Palsy specifically on this site. I’ll promise a weekly article to be published on Tuesdays and a reference to the article I write at 5 minutes for special needs on Thursdays. If my audience would like I’ll also point to any other articles I’ve published that week.
The one thing that I think many in this audience will miss is the Dad/family focus that many of the stories I write have. If you are among one of those readers please go over to TheDADvocateProject.com and choose to sigh up for the news letter. Most to all of my dad/family articles will be posted on that site moving forward.
I’ve begun guest posting over at 5 minutes for special needs. The site is a wonderful resource for parents who have children with all types of needs and it is really a wonderful community. I post every thursday at approximately 1:00 PM. Check out todays Post Ballet – The Penguin Move
Yesterday was Abby’s 4th birthday. We had a great day but the funniest part of the day was when she woke up and wanted to see if she looked 4 years old. She got out of bed and ran to the mirror to see 4 year old Abby. My doodle is a hoot. Happy Birthday Abby. I love you.
Hello, I created a short video just to say thank you for visiting and being a friend. I hope you have had a wonderful year and are able to count the blessings today. I know many folks have had difficulties over this past year and I hope you are still able to find your blessings today. Here is a short video of my thoughts on this day.