Wednesday, November 30, 2011

With Thanksgiving

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,
Kara

Saturday, November 5, 2011

Ups and Downs


Lots of ups and downs this past few weeks.

We finally started OT and PT and it has been great. During his second session of PT Levi started walking!!!! It's a huge step and when I first saw him doing it, I almost couldn't believe my eyes.

I attached a video, can you tell I was happy? Kade was watching with me and he was so happy for Levi too, he ran up to him and patted him on his back, very gently. Sweet brother moment. You can see that his leg drasticlly turns in and it is caused by the tightning of some muscles which is common during the brains healing process. The botox that I have mentioned before is what has been recommended to aid in the healing and correction.

video

This past Monday he had his first follow up MRI, which we will not receive the results from until the end of on November, we are very hopeful that there will be no signs of the tumor and you are welcome to pray along with us that this will be the case.

Since he was being sedated for the MRI it made it an ideal time to get the Botox injections done, however to do this we needed additional insurance approval. For days up to the procedure I had been in communication with the doctors office as we were trying to get the approval. The morning of the procedure came and still we had no approval, but after
wrestling with the decision to call it all off and reschedule or to take my chances, I had decided to go to the scheduled appointment anyhow, hoping and praying that the approval would be received by then. I have never been very good at accepting "no" for an answer when I want the answer to be "yes", especially since I was desperate to get this done as soon as possible to help Levi's foot feel better. It was so turned in that he had to limp on the side of his foot when he didn't have his brace on. Anyhow, back to the story, I was getting him registered for the MRI and still no approval and I was contemplating proceeding anyhow even without approval, until I found out that it would be $3000 if our insuranc
e wouldn't agree to pay for it. At that point, I finally gave up and decided that it wasn't meant to be and we would figure something else out. We were continuing the admin and preparation for the anesthesia and just about 20 mins before he was to be taken into the procedure room, I received a call from the assistant I had been working with notifying me that we had APPROVAL. Whew, what a relief and what s
tress. Needless to say, it was a long day . . . .then we had to go home and go trick or treating . . . .needless to say, not the first thing on my mind.

His leg and foot have started to show good progress from the injections and over the next month the effects from it will be at their maximum, I le
arned that it takes 3-5 days for any effects to show.


I had been gearing up to go back to work next week until I was notified this week that my position at the company I had been with for nearly 8 years was no longer available due to layoffs. Bummer. Big bummer. Our family had been anticipating the return of that income and while I wasn't super thrilled about leaving the boys for 2 days/week again, our child care situation was one that made me feel secure about leaving them. When I got this news, I was instantly overwhelmed with stress over the
way this would affect our financial situation. Over the past 3 months we had been so supported by you all, that for the first time in years financial issues were not an immediate concern of ours. Now, wham! Back in the forefront of my mind. After taking a moment to process this change, I considered that maybe it is what is suppose to be, maybe God knew it was too much for us to handle right now. I have to admit, I felt as though I was barely keeping my head above water anyhow, with all the appointments and needs of our family.

We had the great fortune of having my brother and sister in law in town, with my niece and nephew. They were able to be a huge help to me during this week so that I could make it to appointments with the assistance of my mom and not having to drag along Kade. Plus, it was SO fun to be with family and get to have a change of pace.