Friday, April 5, 2013

Mobility Awareness Month 2013

As many of you know, Daniel has had a rough time of things the past 6 or so months. A 7 year old kid should not have to go through many of these things.

Yes, there are children out there who go through much worse than Daniel. I know this, and I feel their pain and their parents also. It is so sad to watch a child who normally has a smile that can make a sad person happy in an instant, to being THAT sad person.  

After Daniel's invasive hip surgery in September 2012 (you can see previous posts) until about February 2013, Daniel was not that smiley happy kid. He wasn't "my Daniel" anymore. He cried a lot,he screamed when we moved him and we had to move him so he wouldn't get pressure sores. He didn't use his communication device and to make matters worse, he stopped eating the way he use to.

I remember sitting on the floor in our back room sobbing. Not just crying but sobbing because Daniel was "gone" in a way that I knew him. I was blaming myself because I chose to have him get this surgery. Bring on the mommy guilt! I thought this would make his quality of life better, and at the time I thought I had made the wrong decision for him. I sobbed and sobbed to the point where my husband was at a loss for what to say. 

In January we told his surgeon after repeated phone calls and appointments that this is just not working, we wanted the hardware that was left in Daniel's hip OUT. This hardware is normally left in for 1-2 years and here we were after 4 months of hell telling him to take it out. This isn't how Daniel is going to be, it can't be. So, many x-rays later and the bones that were cut in half and repositioned had healed we scheduled his surgery. Unfortunately because of the past months of pain with daily pain meds that could knock out a horse Daniel had lost 15 lbs. Most of us would rejoice with losing 15 lbs. But not when your 7 and you only started out at 55 lbs!
So we also had to schedule him to get a feeding tube. Thankfully both surgeons agreed to do it at the same time and he only had to be put out one time. That was on February 12. On February 13th while still in the hospital recovering, Daniel started to move his left leg again, which he hadn't done is months. We started him on his feeding tube to get his nutrition in without the stress of using a syringe to drip sips of liquid in his mouth. 

Skip forward to April, 8 weeks post surgery and Daniel is back!! Laughing and lighting up the room. He is gaining weight. He's back up to 50 lbs, using his device more and more each day and brightening up my days! While the hip surgery I would not want anyone to go through, I'm glad we did. It was hell. I won't tell you anything different than that and it sucked for everyone involved. Physically and mentally. But he's back to our typical Daniel and I love him to pieces! 

Now, if you're a Facebook friend your probably sick of hearing this (SORRY!) - if your not and wanna be, let me know!
We have Daniel entered into a contest for Mobility Awareness Month which is in May. Please check out their website and read about their contest.

You can read Daniel's story here and please vote if it moves you too! Please share with your friends and family. You can vote once per IP address PER DAY (work, home, cell are generally all different HINT HINT!). There is a mobility question you can answer also to have each vote count as TWO!!!

We even made it onto our local FOX2 News and interviewed by Andrea Isom  you can watch the video here.

The contest runs until May 10th. So go vote daily!!!  Please and thank you.
If you have any questions please email me or leave a comment and I will respond.

Thanks and hope all of you are doing as well as we are!

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