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! 

NF Awareness Month

Today begins NF awareness month.  If someone would have asked what Neurofibromatosis or Neurofibromatosis type 2 was the 1st of May a year ago our response would have been  "n"what? I remember the first time we heard it was at Primary Children's hospital.  Ricki had been life flighted there because of her seizures and the discovery of the tumors in her brain and chest.  We had a sleepless night worrying what was in store for our sweet daughter.  The neurosurgeon came and took my husband and I into another room to tell us the news.  The atmosphere was solemn.  I don't remember much of the conversation except that it wasn't cancer and felt such relief.   However, we still had a lot  ahead of us with different challenges and heartaches with no cure and many, including ourselves that didn't know about nf2. 

This month to raise awareness of Neurofibromatosis we celebrate our  life with Ricki and will be  sharing what we are learning about Neurofibromatosis.

Home again!

We feel so blessed as we see Ricki's amazing recovery. We have felt the strength from the many prayers offered in behalf of Ricki and know she has been blessed.  We were thrilled to come home last night.  The ride home was painful and she had a rough night. But, she was up again this morning trying her best to put a smile on her face. Each day she amazes me with her strength.   It breaks my heart to see the depth of her pain and frustration as she fights the pain and tries to handle it...Some times it hurts so bad she becomes agitated and then later she feels bad for the way she handled the situation. She will apologize and then I see her handle it the next time with the determination to be kinder.  It amazes me that as young as she is she can stand back and analyze her situation and become a better person from it. 

It is so good to be home again!!!!  Ricki's amazing neurosurgeon Dr. Bollo is optomistic that it will be awhile before she has any more surgeries. We are so relieved! 4 surgeries in 11 months has been taxing in many ways and we are all so ready for a break.. She still will have MRI's every 3 months, and Doctor Appointments, but no surgeries in the near future looks pretty good! 

A friend posted a beautiful picture on Facebook recently with the caption "difficult roads lead to beautiful destinations". It has been a difficult road this past year since Ricki was diagnosed with NF2 or Neurofibromatosis type 2.  Through the difficulties we have gained greater testimonies of our Savior Jesus Christ and his love for each one of us.  We have felt such a peace and assurance as we have faced each new challenge.  We have seen our prayers answered many times...sometimes the answer has been what we wanted and other times...(like the time she lost the hearing in her right ear) the answer was not what we wanted. Yet, our prayers have been answered through kind words, acts of kindness, others sharing talks that have given perspective and just what was needed, all giving us assurance that our Heavenly Father had a plan and that all of this was part of Ricki's plan and purpose in life. 

"Happy"

Ricki got to have a visit from the therapy dog "Happy". He definitely brought a lot of smiles to the faces of the kids at Primary Children"s Hospital today. Happy weighs 220 pounds and looks like a snugly jumbo brown teddy bear! 

The beginning of a peaceful night

Today has been a roller coaster ride filled with a great deal of pain, tears, and challenging things for Ricki.  But, we are finishing off the night on a peaceful note.  Tonight I noticed something that Is a small thing but big thing at the same time. As I looked at Ricki sleeping peacefully I realized this is the first time since her surgery that she has been able to wrap her arms around and snuggle up with her stuffed animal. Yes, we are so grateful for the small and simple things.

A Snoopy Day

The bright spot of Ricki's day was when Snoopy the therapy dog came by. It was fun that Ricki had brought a stuffed Snoopy with her to the hospital. Ricki has been thinking she would like to train a therapy dog to help others.. As we were visiting with the owner we learned about the Charles Schultz foundation where they help train service dogs. They also told Ricki that Intermountain Health has a program for training Therapy dogs. Ricki was excited to have something to dream about doing some day.

 It is a sweet thing to see how Heavenly Father is involved  in the small details of our life -even about having a Therapy Dog with the same name as your stuffed animal...