Tuesday, August 16, 2011

It was the best of time, it was the worst of times

Today was one of ups and downs. We had some great physical therapy today and Levi is getting stronger. We had him sitting up in a chair for well over an hour today. His left side is weak, confirming a damaged blood vessel during the surgery. Dr. Levy is confident he will make a full recovery with rehab and the fact that the brain is still growing. Dr. Levy also noted that he doesn't see anything there, meaning the tumor, as far as he can tell, is gone. It feels awesome to write that. Time will tell and Levi will be getting regular MRI's to make sure all is clear.

The Irish Eye Doctor came to see Levi today and confirmed that damage we initially suspected to the optic nerves. There was no apparent damage from the surgery, just the long term presence of the tumor which compromised the nerves. The good thing is that we (humans) only use about 10% of our optic nerves, but how Levi sees depends upon how his body uses what is there. It is like having a killer HD flat screen and putting rabbit ear antenna on it. You may get a great picture or not based upon the direction of the antenna. Let's keep praying that his body responds well.

Levi is not holding his stomach well, which is possibly a result of the post operation recovery and the sodium imbalance they are working on by finding the correcting hormone dosages.

I want to see Levi smile. For those of you who don't know him, he is the happiest kid you will meet with a big smile and smilly eyes. I yearn for the day when we will see that again. Kara and I are tired and fatigued. We are so blessed to be getting the care we are getting at an amazing hospital but we are sick of this place. We just want to be home. Kade wants his family home. We are all having a difficult time with the length of time we have been out of whack. Today was day 10 in hospital and day 19 since symptoms showed up.

The hope we hold onto is that we are closer to the end, than we are to the beginning. As we observe other families here and reflect on other peoples experiences we realize that our situation is minor. The CANCER is gone, our son is not dying, and he will get back to normal. In that there is so much to be thankful for and we are trying to keep things in perspective, but the day in and day out is wearing us out. But hey tomorrow is a new day, and our God has the habit of making all things new.


  1. Its incredible to see the miracles taking place in our family. So many lives have been touch because of this life event that.you are experience. My faith has grown stronger watching the true power of God. I continue to pray daily for each of you.

  2. I found you blog thought a link on another blog. I'm so glad I did! You can can count one more person rooting for Levi! Sending much love and strength to your family.

  3. It is no doubt the fatigue is starting to settle in . . . you all have been through so much in the past couple weeks, and there is still a lot of work in sight. We will continue to pray for strength for your whole family, along with the comfort of knowing that sooner, rather than later, things will slowly start getting back to normal. - the Kennys

  4. "The CANCER is gone, our son is not dying, and he will get back to normal." - This made me smile.
    Praise JESUS!!!!! I am continuing to pray for a speedy recovery.

  5. God is amazing and awesome in so many ways and I know Levi is his miracle child, your lives will be back to normal in no time and all of this you are going through will be a bad dream that you won't have to go through again...We are praying for you to be given the energy and strength that you need to be there for your two beautiful boys!!! Hang in there guys, you are an inspiration to all of us!

    God Bless,
    Laura & Erik Bianchi

  6. Hi there. I was directed to your blog by a friend of yours that I went to high school with. Sounds like Levi is one amazing kid! Children's is a great place and they will take great care of you. But it does get old after awhile and getting home seems to be the only thing you can think about! Just know that when he's ready, you will be there and it will be the best feeling EVER! We will continue to pray for your family and thanks for sharing the story of your sweet boy. It's amazing how much one child can inspire so many. Sending positive thoughts your way!
    Tricia Benton

  7. Hang in there you guys! You'll be home soon. I'm praying for strength and endurance and patience for all of you. And continued recovery for Levi. This time is hard but it will pass.

  8. Been praying for Levi after some friends forward the request. Our hearts hurt for you and our hearts rejoice with you. Our God is good...blessings to that sweet little boy.