One more visit to the ER

Last Sunday Ricki wasn't feeling well but I talked her into going to church anyway. Once at church she put her head on my lap like she usually does when she isn't feeling well.  Her nose started draining a watery substance and wouldn't stop so we had to leave. It stopped after a little bit but Ricki was just not feeling well.  She had some behavior changes and was acting funny and went and laid down under the kitchen table.  I determined it was because she was so frustrated because she wasn't feeling well. The rest of the night she was pretty miserable. It is so frustrating because I never know for sure when to take her in. I emailed our neurosurgeon and asked him what we should do.  He emailed back on Monday and was concerned it was a csf leak and we needed to watch her carefully. She still did not feel well on Monday and it began to drain in the afternoon so I called to see if we could get her into the dr and they told us to go to Instacare. Once we were at Instacare we waited and then when it was our turn they asked what they were seeing her for and when I told them she went and talked to the drs and came back and told us they couldn't help us.  So frustrating! On the way home our geneticist emailed about something else so I emailed him and he suggested we collect a sample. By the time we got home her nose wasn't draining much.  Then Tuesday we got another email from our neurosurgeon explaining that if it was a csf leak we needed to get it checked. Even though Ricki had a pretty good day we decided to take her in to Primary's to get her checked so if she was ok we wouldn't be worrying over the holiday. They were so sweet at Primary Children's. She had a small amount of leaking but not enough to collect while we were there. They did a ct scan and didn't find anything. They seriously considered doing a lumbar drain on her but we were grateful they determined to wait and watch so we could try to be home for the holidays. She perked right up and was pretty excited over that news!  We have felt the prayers in her behalf and she has done so well the last few days. She had a pretty sever headache Christmas Day but we were able to keep it manageable with some of her medicines. We are so grateful for the miracles we have seen  this Christmas. We are grateful for all the blessings of the faith and prayer of all our family and friends. 

Last doctors appointments for 2015

Our appointments yesterday took all morning and we were in the doctors offices for what seemed like forever.We left for Salt Lake around 6:30 a.m. The first appointment was with Dr. Visckochil our geneticist. He is our Neurofibromatosis Type 2 (NF) specialist. We appreciated all the time and care he took going over Ricki's MRIs and trying to figure out  the head aches, the bumps on her head, and the abdominal pains.  He told us it was actually unique that with the small percentage of cells that carry the genetic mutation from the genetics testing for Ricki to have such a large number of tumors. He ask for permission to visit with other NF specialists to see if they had some experiences similar to Ricki's.  Even though we didn't come away with any answers it is comforting to have wonderful doctors trying to help us. Even though it was time for our next appointment we stopped and visited with Kelly Carpenter - who is the chair person over our area NF group. She got things put together for Ricki's warrior bead necklace wich was fun for Ricki. Next off to our Neurosurgeon Dr. Bollo. Dr. Bollo was not sure why Ricki was having the bumps and didn't seem too concerned. He did say he thought that her abdominal pain could very well be caused from some of her tumors on her spine. He thought it was nerve pain and that if it were the pain could be managed with a nerve pain medication. We thought we might try it if they don't find anything when they scope her stomach. Ricki's left arm is also painful and her toes are numb...which could also be managed by the same medicine. I hesitate to start her on medicine so young..we will just have to wait and see. The last thing he mentioned was that they were still watching the tumor in her chest closely.. Dr. Viskochil requested a tumor review with the radiologist,neurologist,dr. Bollo and himself along with some others to closely review Ricki's case and make sure they weren't missing anything. That will probably happen in April after her next MRI. All in all a good way to finish of the year 2015 with such caring doctors!

Doctors in December

We feel so blessed to be able to get Ricki into a gastroenterologist.  They had a cancelation and were able to get her in this week. In addition to her headaches she complains of abdominal pain a nausea every day and I am motivated to get to the bottom of it.  A mother posted on the NF2 parent site that her son had been having similar symptoms  for several years. They finally scoped his stomach and discovered a tumor that could not be seen on the MRI. 

We loved our doctor,  she has some experience with NF which is rare and was so sweet and supportive in trying to find the cause of her pain. It looks like she will have a EDB in January and then we will go from there. 

We have two more appointments this week at Primary's and then hopefully no more till 2015! It has been a good year filled with many miracles. The miracles came in many forms....doctors that knew just what Ricki needed, nurses that were compassionate and attentive, kind words, hugs, thoughtful notes, lots of visits,  and a variety of sweet and thoughtful gifts that were all inspired and just what was needed.  Ricki definitely has many sweet angels watching over her!

An early Christmas

Saturday Jason, Ashley and Teddy brought Ricki an early Christmas present. To her surprise and delight she received a new little puppy.  She has really missed Wilson to snuggle with when she has not felt well.  It has been a couple of rough months for Ricki with her unexplained headaches, bumps on her forhead, nausea and stomach pains and to top it all off she has lost 9 pounds.

It has been so fun to see her laughng and smiling the last couple of days. We are feeling so grateful for the thoughtfulness and inspiration of our kids.  Getting a puppy wasn't on our to-do list, but it has been just what Ricki needed. It is humbling to see our Heavenly Father's hand in our lives. One of my favorite scriptures is in the Book of Mormon 3 Nephi chapter 13 verses 28-32 and also in Luke 12 vs.7 I know he loves and watches over Ricki. She has been blessed and strengthened just when she needs it. We feel so blessed and humbled by the many sweet angels angels in our lives.

Early Christmas Blessings

Well, this trip to Dr Shelton was a happy one. The tumors in Ricki's left ear have not grown and her hearing remains good! It has been so humbling to hear of the multitudes of loving and kind prayers that have been  said in her behalf ...and they have been mercifully answered. What a sweet blessing and miracle that her hearing has remained the same for a year! It has brought peace knowing that is one hurdle we will not have to deal with anytime soon. Ricki has had much to deal with since she was diagnosed with Neurofibromatosis type 2.  She still suffers from pain, headaches and nausea on an almost daily basis -and that is enough for now.  It suprised me after her Dr.  appointment she seemed down and when I asked what was wrong she started to cry. She was really hoping to find the cause of all her pain and there would be something they could do to fix it.  My heart aches for the lessons of endurance she is having to learn at such a young age. It has been inspiring to me how she works through the reality of how things are for her.  She began looking to her future this weekend and has been trying to understand her talents and begin to make the most with what she has. I am so proud of the young women she is becoming. 

Blessed with peace

I found myself on edge and very nervous the beginning of this week. When trying to determine the cause I realized I was feeling anxious about Ricki's hearing test Friday... Have her tumors grown? Are they causing hearing loss? Could they be the cause of her pain? My worries were making me sick. However, as I let go and turned it over to Heavenly Father and trusted in his plan for Ricki I have been blessed with a sweet peace and assurance that whatever obstacle may be placed in her way Heaven will be there to bless her . Well..I am still a little nervous for tomorrow but excited to spend the  day in Salt Lake together. I am so proud of the grace Ricki has. She amazes me! 

Welcomed Relief

Ricki has had some welcome relief. She has had 4 good days in a row. Good days mean she is able to function even with her headaches.  She has had to take some migraine medicine the last two days but it is keeping her gong. She was so excited yesterday because she was able to participate in her dance class parent show and cha cha competition.  She was amazing!  No one would know that she had missed almost all of her dance instruction last month.  She was in seventh heaven when she made it to the top 4 in the cha cha! I am so inspired by her inner strength and determination! So proud of her.