Wrapping up 2015

I will try to catch up our blog with Ricki's NF2 journey.  The last post left off with Ricki having several seizures an hour. We spent the summer going to primary children's a couple times a week with dr appointments and pain management sessions. Her seizures slowly but surely came less and less. Knock on wood she is down to several seizures  a week.  She still gets twitches frequently on her left side but  the dr feels they are probably caused by some of the tumors on her spine. 

Ricki has become pretty amazing at handling her pain. She has found outlets to take her mind off of her pain. She loves to draw, look at designs, watch disney movies, and she also started a service club that she found much enjoyment in.  

In the fall we were excited for her start back to school. She was attending half days and was attending almost every day.  She enjoyed feeling like a normal teenager again. She started participating in ballroom dance and found much enjoyment in it. Ricki loves music and also started taking voice lessons.October came and she had her MRI and everything was looking stable. Her headaches were down to 1-2 a week and we were feeling optomistic and happy things seemed to be settling down. 

Just before Thanksgiving she began having severe pain in her back,chest and left arm. It was painful to move and when she did it even hurt to breathe. Suspecting it was nerve pain they increased her nerve pain medicines but it didn't give her any relief. They determined they needed another MRI. The first MRI they used sedation hoping to ease the back pain long enough to get the MRI but even in a deep sleep she was in such pain she kept moving and they were unable to complete the MRI.  This MRI it took them 4 tries to get in her IV and I was so impressed with how she handled it! Tears came to her eyes but she kept a smile on her face.  What a long way she has come! That has not always been the case. The next week they completed the MRI while she was under anesthesia and it worked much better. Upon reviewing the MRI we discovered she had a couple of new tumors forming and that the tumor in her chest was actually putting pressure on the nerves and causing the pain and could possibly be the cause of all the headaches she has been having. They determined however to try yet another pain medicine but even though it took the edge off she was still not able to sleep well at night and when she moved about it becomes very painful. 

They have recently determined that surgery might be the best option to improve her quality of life. It is pretty sad when your daughter is happy about wanting to have a surgery. She always grabs her shoulder in pain and tells us she just wants it out! 

Our Neurosurgeon Dr. Bollo told us he would review Ricki's Case with a pediatric surgeon and get back with us so we are currently waiting to hear back from them.  From our previous experience it will be a slow process so in the meantime Ricki continues to rely on Dr. Pepper and her pain medicines.