Wednesday, November 30, 2011
I apologize, it has been too long since our last post, it's so easy to get wrapped up in the day to day things.
We had our first follow up appointment with the neurosurgeon yesterday, where we received news that his latest MRI showed NO signs of tumor regrowth. Good news! I was anticipating that news, but after you go through hearing the unthinkable once, it occurs to you that you just can't take good news or a clean report for granted. We also got a better understanding of the causes of Levi's post-surgery changes (more on those later). It was striking to see the expressions that the neurosurgeon and his nurse practitioner gave when they reviewed the films of Levi's tumor--it was quite notably a big one. And when your surgeon has performed the most removals of these types of tumors in the WORLD, it makes you realize the magnitude of what Levi was dealing with.
Some of what we got clarity on . . . Levi's tumor shared the same blood supply as the section of his brain that controls movement, the potential damage and the effect on Levi's life was worth the risk to remove the tumor in it's entirety.
We met with the opthamologist today and got more clarity on his vision. It is affected by two separate issues. First, as we have written about before is the damage to his optical nerves from the tumor compressing them, they continue to appear gray or damaged. This type of damage usually causes peripheral vision to be compromised, which is very apparent when he has his patch on and runs into all sorts of things. Very sad.
Secondly, he has a condition called Third Nerve Palsy, which was caused by the third nerve getting stretched out by the tumor, and this nerve is particularly sensitive especially during surgical procedures so it could have endured additional damage during the surgery. It is the culprit for Levi's eye not opening at first and for the poor vision he has in his left eye. The patching therapy is to encourage any improvement to the eye affected by this nerve. The nerve controls the eye opening function and movement of the eye. I learned today that Levi will have to patch for years, many years. Many people have suggested that Levi will be able to get glasses to correct his vision issues, but I received confirmation that these types of issues are not correctable by glasses.
One good reminder we got from the neurosurgeon is that Levi is still very fresh out of surgery, and it was a BIG surgery. That brings a lot of hope for continued healing and restoration of his little body.
We were so fortunate to have my family bless us with a trip to Desert Hot Springs for Thanksgiving. It was a welcome break from real life for a few days and our first time dealing with Levi's new needs in a place other than home. Besides forgetting one of his meds in the fridge and having to go back and get it, it went pretty smooth. There was also a night where one of his meds didn't work and he wet through 4 night-time diapers and clothes and drank 5-6 sippy cups of water. At least it was our last night there since I ran out of clothes for him!
One thing we are especially thankful for is Levi's blossoming personality. He is becoming a full force 2 year old. Since the pressure in his frontal lobe has been relieved he has sky rocked in other areas of growth. He has a LOT to say. And I mean a LOT. Seeing him thriving in these areas of life make all the other deficiencies easier to overlook and give us a lot to be thankful for.
Emotional ups and downs still hit me as I am adjusting to being a stay at home mom and shuttle Levi to his many appointments AND shuttle myself to my prenatal appointments. It's been hard to connect with people, cause the appointments and therapies consume so much of our time and energy. I am so thankful for the help I have from friends and family that have helped make all of these appointments a bit easier by watching Kade and/or Levi.
I feel like it might take years to process what we have just gone through. I think back to a few months ago and it seems like a lifetime ago and I think to myself, did we really just go through all that? We did and Levi has the scar to prove it.
Happy belated Thanksgiving to you all, I am so thankful that you care enough to read this,