Dig A Little Deeper

Ricki has been having some severe chest pains all afternoon and into this  evening. It is so difficult knowing there probably isn't anything they can do for her but seeing her in so much pain. Surely with all the medical advancements there is something that could give her relief. When she about passed out when she went to change into her pjs for the night we decided to take her to the ER because you still just never know if it might be something serious...

All her blood work came back fine, the EKG was normal but the x-ray did show some growth of the  tumors in her chest... They have been watching these for awhile and  unless they cause something life threatening I am afraid she is going to have to continuer to live with this pain....  

Ricki's Disney quote for the day is from The Princess and the Frog....

  When the nurse was working on her IV it was tricky but she did an amazing job.  Ricki told her that most nurses take several attempts  to get her IV in. The nurse told her to remember to tell the nurses to use her right arm in the middle and there was a deep vein. Ricki said that reminded her of a song in "The Princess  and the Frog". 

   

YOU GOT TO DIG A LiTTLE DEEPER.

  - I know she was having fun joking about  finding her vein for an IV but she definitely gets the award for her amazing ability to dig a little deeper. 

May is NF Awareness Month

May is NF awareness month. When Ricki was diagnosed in 2013 we had never heard of Neurofibromatosis it was like "neuro what?" We had to practice saying her diagnosis so we could tell others. There is much to do to increase awareness and help families through that difficult time when they receive the difficult diagnosis. 

Ricki has NF type 2 and she develops tumors on any nerve throughout the body especially along the spine and brain. It affects 1 in 30,000-40,000 people. Ricki has innumerable tumors. In four years she has had 6 surgeries, suffered total hearing loss in one ear, and because of the tumors one of her vocal chords became paralyzed. She has also experienced paralysis of her arm and hand, suffered from seizures, migraines, constant pain and depression - and we consider her blessed and fortunate. These tumors though not always cancerous can cause  so much pain and damage and unfortunately sometimes death. We are so grateful to our many friends and family in helping us spread awareness and hope to the many who have been diagnosed and will yet be diagnosed with Neurofibromatosis. 

As Ricki says 

"I have learned it is important to remember everyone is fighting their own battle.....and the most important lesson I have learned is that We can do this TOGETHER!"