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.

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.


  1. Kara, our family is still praying for you all! I'm sorry to hear about the job situation, but just like everything else, the Lord will provide exactly what you need financially. We've been there, on the verge of losing everything, and He kept us afloat. Let me know if I can do anything. Hopefully I will see you at one of the Friday park dates soon :) Andrea Cox

  2. Hello! You don't know me, but Julie Dixon is my cousin and I've been following your blog and praying for you all from the beginning of the journey! Thanks for sharing this path you are on -- the goods and the bads! Your honesty lets us know how we can better pray. When I read about your introduction to Botox, I wanted to write and share a little of our experience.

    My boyfriend, Tim, had a hemorrhagic stroke three years ago that damaged the part of his brain that controls his left side. Thankfully, it didn't affect his memory or speech, but it did severely affect his movement. In the days following the stroke, we wondered if he'd ever walk or do anything with his left side again. For four months he was in the hospital and rehab (and even a nursing home for a few weeks when insurance decided they didn't want to pay for rehab anymore but he was not at all ready for home!). But, here we are almost three years later, and he is walking, teaching again (he's a college music prof), driving, and is continuing to make incredible progress. All of that to say that Botox has made a HUGE difference in his recovery. He had/has significant tone in his left arm and hand, as well as some in his leg and foot. About two years ago he started Botox, specifically in his arm, wrist, and pectoral muscles, and it is AMAZING the difference it's made. Before the stroke he was an incredible pianist and organist, but the stroke took that completely away. With the aid of Botox, he was able to make his fingers start to move without tightening up and started the process of teaching his hand how to play again. The process is slow, but it is truly amazing to see the progress he has made! The affects of the Botox can come somewhat subtly, so try not to get discouraged if it's not like "magic" overnight. In our experience, it is a gradual improvement that comes over a few weeks. He still gets Botox every 3-4 months (and we're praying insurance continues to cover it!). It's a continuing journey, and the Lord is teaching us much through it. I am praying your little Levi experiences great improvements through this!!

    Hope this is an encouragement! Praying also for your financial situation... the Lord WILL provide!

    In Christ,
    Rachel (in PA)

  3. Ahhh Levi looks like Dan in the last picture with the hat on. Beautiful family photo too!! Hey we will keep praying for you and your family. Love you guys!!