NF camp 2014

Ricki was so blessed to attend NF camp this year! It blessed her life in so many ways! She enjoyed meeting other kids from all over the world with similar challenges and even some with tougher challenges than her own. She gained confidence as she experienced new things and did team building activities. She came home with more confidence in herself and in her future.  She came home a stronger hero...thanks again to all those who made this dream for Ricki possible! 

One more surgery

Shortly after the last post we took Ricki to a plastic surgeon at Primary children's hospital.  She had 3 tumors in her skin. Two on her face and one on her leg.  The two on her face have been growing and causing some discomfort for Ricki.  The dr. explained that to remove these tumors it is better to remove them while they are small.  He said it is like cutting a hole in a piece of fabric...it is easier to sew shut a small hole than a big hole in the fabric.  The bigger the hole the more puckering of the skin when they sew it up. We scheduled the surgery for late August but there was a cancellation on July 12 and we were excited to have the surgery done before school started. They removed the 2 tumors from her face but left the one on her leg because it was so large and the skin wouldn't  stretch very well there. The surgery went well.  They used a product like super glue to seal it instead of stitches so there would be less scarring. It turned out to be purple glue! Ricki was not thrilled about the purple on her face but it came off after 2 weeks and it is looking great.  We just have a couple more dr. appointments before school and  then....officially and hopefully we will begin a break from the doctors until November/December when she is scheduled for her next MRI and hearing tests.  So we are crossing our fingers at the possibility of going 2-3 months without a dr. appointment.  

It is hard to explain all the emotions but do wish there were a cure or better treatments for all those with Neurofibromatosis. There has to be a better options than watching and waiting till the tumors cause hearing loss,vision loss, paralysis and pain. 

We have been so blessed in our Journey with Ricki.  We have been strengthened and supported with much love and kindness. Thank you for all the kindness and prayers in Ricki's behalf.  

Summer update

My intent in May was to share what we had learned about NF2 this past year. Surprisingly with it being the year anniversary of Ricki's first brain surgery I found it more difficult than I had anticipated to recall what we had been through this past year. The hardest part of it all is that there is no cure.  We are at the mercy of her tumors...how fast they decide to grow and how they affect her.  

After a crazy year however, we are looking forward to a break. We were excited and relieved to hear the news from her neurosurgeon that we have no more urgent matters to deal with.  Ricki is excited to get back to school and to worry about the normal things teenagers worry about.  She still suffers from frequent pains and headaches and we are trying to figure out the best ways to manage her pain.  We are also looking into the accommodations she will need at school to have a great school year.  

Ricki has been challenging herself and her strength and endurance is slowly returning. She is looking forward to attending an NF camp in a few weeks.  So all in all it will be a funner summer than last year!