Thursday, February 16, 2012

Blog post: check

Wow, it's amazing how long
"update blog" resided on my "To Do"
list, yet evaded me for weeks and weeks.

It's been nearly two months since my last post, it's amazing how the time flies by yet drags along at the same time. During all the weeks of procrastination on writing this post, I also delayed this entry because I felt I was coming up pretty blank. Insightful thoughts to share: none. Interesting/exciting updates on Levi's health: nope. I was having a hard time putting this phase of our lives into words. I think I finally concluded that I still don't have words, but accept that this is okay for now. I accept that we are just surviving and that's okay. Yes, there are wonderful moments and glimmers of hope mixed in there, but in general, I (we) are just getting by. Some days I dread the future and some days I can hardly wait, but in all of it I am trying just to keep on pressing on, in hopes that one day it will be a little easier . . . . and my body won't hurt so badly. . . and I won't wish for a one story house (bring Levi up and down the stairs is hard on this hugely pregnant body).

The updates on Levi's progress are as such:
  • Tumor: On Valentines Day we met with the neurosurgeon and we received wonderful news, Levi is still tumor free! I always go into the appointments expecting to hear this news, but it still is such a relief to hear the words come out of the doc mouth. We also had a chance to see the actual scans of the before and after of his brain. Holy tumor. As you look at Levi's profile, the tumor took up about a quarter of his brain space, it was pretty ugly. Again it reminds us of how thankful we can be of his outcome. And we don't have to get another MRI for 6 months!
  • Vision: Patching. Oh how I loathe thee. By far the hardest part of Levi's rehabilitation. During the past few weeks I had decided that if I was given the choice of winning the Lotto or not having to patch Levi anymore, I would definitely choose not patching.
  • Motor Skills: We continue our routine of PT/OT twice a week and Levi continues to make very small bits of progress. We call it "Gym Class" and regularly requests to go and tells me how much fun he had there.
  • General: After we got through the short hospitalization after he got the flue, things have been quite stable. We had a follow up with his endocrinologist and we talked briefly about how he is not growing (expected) and will look at staring growth hormone this summer. I guess generally when cancer is involved they don't like to start it sooner than a year after resection in case it could cause any tumor regrowth.
We keep very busy with the appointments as well as the additional meetings that we have been doing to get Levi set up for all the programs he will be eligible for when he turns 3. So until I have this baby, we'll be pressing to get a lot of these things wrapped up.

I hope that my next post can share our new little one with all of you. I was having a considerable amount of anxiety as related to birthing this baby and his well being. As I prayed, I could tell that something was stopping me from really letting go of worrying about it. Until last night, when I gathered with four of my most treasured friends and they prayed with me I didn't realize why I wasn't able to release this fear. Control. If you've ever waited on a baby to come, you know the feeling of having no control of the timing and the anticipation that comes with all the unknowns. I knew I wasn't in control and as frustrating as that was I accepted that. The thing that I was forgetting until last night and that provided the key to the peace I was missing: I am not in control but God is.
This I can grab onto, this I needed. A reminder of the big God we serve and a reminder that the same God who carried us through the last 6 months will s
urely carry us through the next.

Photos: (top) Levi's typical morning routine: Cherrios eaten with his fingers since he shys away from the spoon when patching, milk and apple juice. (middle left) Levi hiding his arm from me at the lab because I told him he was going to have to get a little pinch. He's a smart little guy. (middle right) Prepping for his MRI, he does so well with all the stuff we put him through. (bottom) Kade and Levi enjoying a local lagoon.

Ah, now I can finally check this off my list. Now to get the last item of the week completed: wash car.

Love to you all,


  1. Thanks for sharing your heart. You continue to bring encouragement to me through what God is teaching you. Levi is so stinkin' cute!!! So wish he and Ryland were little buds. Praying for you as you get ready for baby boy Ryska! xo

  2. Seriously the cutest lil man! We rejoice in the cancer-free news and continue praying for all of you! Thanks for allowing your hardships to encourage others. Love you, friend. Wish I was walking alongside you-literally as we used to-but I am still beside you always! Love u and your boys!!

  3. Kara, I love you because you are an amazing mom. I just want to let you know that Levi is not disabled. Levi has a disability. The disability does not have Levi. Having a disability does not mean that one has no ability. Levi is an able bodied young child who can do whatever everybody else can do with some accommodation. However we all need accommodations in doing our daily activities.The big question is why do some people wear glasses, or need a secretary? Also remember that we all have a neurological disorder. In essence we all have a disability so Levi is not alone in this journey. He is such a handsome child. God is the only true Doctor who can do miracles.Keep your head up. Stay blessed with your whole family.