One week... ago!

Can you believe it? This time, last week, we were saying our goodbyes to Graden, watching him laugh, without a care in the world, as he rode back to the operating room on his hospital bed, preparing for what could be the worst surgery of his life...

I say worst surgery because it was scary. Risky. Major. It involves hours of precision, care, and attention. It's at the base of his brain -- so very close to his spine. They actually touched my child's brain stem...

But, that's not all! The recovery is horrible. Long. Challenging...

Or, it is supposed to be!

But, for our Grado, it's been difficult - not horrible. Just another challenge he is determined to overcome. I should have known...

Makes me wonder why I was ever worried in the first place? (Yes, I'm being sarcastic!)

I will always worry about him, and we do still have a long road ahead of us, but overall -- this kid is amazing! Honestly. Doctors and nurses, Neurologists, Neurosurgeons, and Neuro-technicians all commented on his ability to respond, move, and tolerate pain that most cannot after a surgery like this - no matter their age. 

We did have our scare, but it really may have been a "fluke." We will pursue that further as we recover...

So, now we're home, beginning the second week, and we're doing okay. We are all okay...

We still have restrictions:
-no soaking in water (no baths or swimming)
-nothing on the incision (lotion, ointment, or sunscreen - so we won't be outside much)
-no touching the incision (which is one of Graden's biggest challenges because it itches!)
-no "rough" play (obviously!)
-no swinging, biking, climbing, running, or jumping -- feet need to stay on the ground
-and we have to check the incision daily and be very careful of infection, so we're cautious about visitors these next few weeks because even the slightest fever can put him at risk...

We did let him "play" outside for a bit last night, as we sat on the deck just enjoying the weather. He wore himself out quickly, though, and slept soundly last night. He's had very little pain medication, but we made sure he had some before bed so he didn't wake up sore from trying to do too much, which is another of his big challenges.

Overall, though, we're doing better than any of us (doctor included, and especially me) anticipated. This week was supposed to be spent lounging around, taking it easy, and we're still trying that, but he's definitely moving more easily than I could have ever imagined. His range of motion is still limited as his neck muscles heal, but, again, he is bound and determined to climb this mountain on his journey...

And, those of you who know him will be happy to hear he didn't miss a beat or lose his sense of humor. :)

What's next? Well, we recover. Get stronger, and we go back July 10th to visit our Neurosurgeon at Riley. At the follow-up, we will talk about the "next step," which should include follow-up tests to determine the success of the procedure. We know the surgery was successful, but we won't know if it alleviated any of our health concerns until we complete those tests -- MRI and/or Swallow Study. We can't do those tests, though, until he's had time to heal...

We still live one day at a time, and many days, we go one hour at a time... and, I'm okay with that, because he's home. He's doing great, and he's still my Grado. I couldn't ask for more.

Much of his success comes from family, friends - both new and old, and friends-of-friends or -family. The power of prayer, good thoughts, and well-wishes is truly amazing. It seems that as we've been on this journey we have learned about so many others who are also going through challenges. Some are overcoming their obstacles while others still have a tough road ahead. 

I've wondered what I would be blogging about if Graden's recovery wasn't going so well. In fact, that's what I prepared for before his surgery began. I wanted - no, I needed - to be prepared for the worst. And, I'd like to think that I would still be able to acknowledge that everything happens for a reason... but I know that acknowledgement would not be easy, and, while I can't fully imagine, I definitely came close...


Today, I end with this:

I am thankful each and every day for what I have, exactly as it is. While it could be better, I sure know it could be so much worse. For those of you going through similar challenges with health concerns, please know that we are thinking of you and are here if you need...

To all of you:

Thank you. Plain and simple. Not just from the bottom of my heart, but from the whole darn thing -- thank you, thank you, thank you to each and every single one of you. 

My New Project: Building a CSF Chapter!

As you know, along with other health concerns, Graden has a Chiari Malformation; it is a rare brain defect that causes many more side effects than I will post here. Instead, you can visit my favorite links to research more, if you haven't already:

1. http://www.mayoclinic.com/health/chiari-malformation/DS00839
2. http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
3. http://www.chiariinstitute.com/chiari_malformation.html
4. http://www.childrenshospital.org/az/Site699/mainpageS699P0.html
5. http://www.csfinfo.org/
   (You can like the CSF on Facebook, too!)

These websites have helped us understand more clearly what Graden has and what his surgery (on June 10th) will entail.


Because of my strong desire to learn, Graden and I have decided to work with the Chiari & Syringomyelia Foundation (CSF) to open a CSF Chapter here in Fort Wayne. Believe it or not, there is not a chapter here or in Indianapolis -- two of the largest cities in Indiana.

In addition to researching websites, as I have shared Graden's story, I have met others through social media that have experienced the same health issues he has; it has helped us so much, and I want to offer that knowledge to others. 

In order to do start this project, I am working to raise $1,000! 

Graden will be participating in a "Solo-Walk" on Friday, July 5th. He will walk around the block in our neighborhood. Feel free to sign up to join him! As part of his recovery, his goal is to have 25 walkers (Team Graden!) and $1,000 in donations. (As of the date of this post, we have $255!)

The money raised will allow the CSF to grant me the ability to create a Fort Wayne - CSF Chapter, allowing us to continue to share our story, implement support groups for patients and their families, continue fundraisers for research, and establish education in our area!

If everyone one of my friends on Facebook gave me $1.00, I would have $1,060. :) Please, please consider donating to this great cause. So little is known about Chiari, despite being such a serious health concern. Feel free to share this request, my blog, and our story, too. The more we reach - the better.

CLICK HERE TO SIGN UP!

Graden's Surgery: Begin Countdown

I got the call confirming Grado's surgery.

He is scheduled for posterior fossa decompression for his Chiari Malformation on Monday, June 10th.

Let the two-month countdown begin...



*Click on the underlined words above for more information about the surgery and malformation.