I am fine....

2017 started off somewhat similar to 2016...Ricki began having chest pains on the left side that radiate down her left arm to her fingertips.  In addition, the pain wraps around into her back and down her left leg to the bottom of her foot. Initially when her foot was hurting she would hobble but now just walks. When I ask if the pain has improved she responds that it hasn't she is just used to it. I am in awe of her strength and resiliency. She is scheduled for a MRI this next week and then we will go from there.  We are also in the process of fighting with our insurance to get authorization for botox and nerve blocks for Ricki to hopefully give her some relief.

I came across this picture and it made me think of Ricki no matter how much pain she is in she always tells me she is fine :) 

Johns Hopkins December 2016

The Neurology team and staff are so warm and welcoming at Johns Hopkins. We are so blessed to be with some amazing experts in the field. 

Ricki was given a additional diagnosis of Postural Orthostatic Tachychardia Syndrome - which is of course another rare condition! Ricki is definitely one in a million in more ways than one. In some ways it is finally a relief however odd that seems.  We have been to several doctors and they have been telling us it is all in her head:( so it is a comfort having a cause for some of what she is experiencing. The next step is to experiment on some of the suggestions they gave us to lesson the symptoms and make life a little more comfortable for Ricki. We will be focusing on diet and some very specific excercises. They were so cute as they worked with Ricki. One of the challenges is any type of movement needs to be taken slowly.... No wonder she loves Flash the Sloth from the movie Zootopia! One suggestion was to sing "happy birthday" between each movement to let her body adjust to each new level. This is something she already had  started doing naturally but not all the time. 

The other issue that has been of concern was with some of the tumors on her c-spine. There has been talk of surgery but Dr. Blakely felt a better route for now would be an occipital nerve block that could relieve the pain without surgery. Her concern was that surgery could actually irritate all the nerves back there even more and make the pain worse so it is better to wait as long as possible to remove the tumors. 

Several other things we're discussed and we loved how thorough Dr. Blakely was. It was fun to watch how detailed she was and she knew exactly what to be looking for. She was vey optomistic and felt Ricki was really doing great with all she had going on! 

We feel so blessed and have some relief knowing we have someone with more experience keeping an eye on things with Ricki that we can continue to go to for the future care of Ricki.

                             

                                           

                             

Dad's Post fromJohns Hopkins

Johns Hopkins medical team was awesome. So good to be with specialists that understand what's happening with this awesome girl. They said Ricki is coping amazingly well with all she has going on. So true. She is the toughest, most positive person I know. Love you girl! 

    

                                

Big week!

   We have a big week ahead! We are so excited! We had the opportunity to meet Dr. Blakely at an NF conference and she was so sweet and kind to Ricki. Ever since, we have wanted to work with her in trying to figure out what is going on with Ricki. This week our dreams are coming true and we have our appointment with an NF2 specialist Dr. Blakely in Maryland. We have high hopes that Dr. Blakely can give us some answers or avenues to improve Ricki's health and ability to function. Our hearts have been breaking for Ricki. She has been in a lot of pain this week. Ricki has never been much to complain about her situation. She lets us know she is in pain but never complains or cries about her life.... Until this past week. She is tired of being in pain, not feeling well, and not having the energy to do much. Just getting ready for the day wears her right out and she  needs to rest. It breaks our heart to see her eyes tear up in frustration. We are feeling so blessed with this opportunity. We are so blessed by the love and support of many and recognize there have been many miracles that have transpired since we began this NF2 journey with Ricki. Thank you to everyone for the  love support and prayers - we couldn't do it alone.

            

                                               

Our Extraordinary girl!

This was a recent post from Ricki.  She has been so touched by everyone's love and support! 

Loving my ExtraOrdinary necklace! It's a daily reminder that being extraordinary doesn't mean being perfect or being more than just ordinary. It means that what you fight through everyday is worth something. You are amazing, fantastic and yes extraordinary. Every one has battles, in the end are we not all warriors?🎶we are the champions my friends da da and we'll keep on fighting to the end🎶 haha no but really I find it amazing how we all have different battles yet we all are connected through similarities we thought weren't there! I love you all so much. Keep fighting your battles like the Warriors you are. And keep being ExtraOrdinary💕 #ExtraOrdinary#JourneyGirl #KeepFightingWarriors

Blessings

It has been a week filled with blessings....

We always get a little nervous when its time to get Ricki's hearing checked and we came away feeling so blessed and grateful for the time she has been blessed with to have good hearing in her one good ear. Dr. Shelton felt like her other tumor on her facial nerve is stable as well. Such good news! Just hours after her hearing appointment we received a phone call from the NF clinic at Johns Hopkins. They had one appointment in December for Dr Blakely and wanted to know if we would like it. We are feeling so blessed with this opportunity....when we met Dr Blakely, she was so kind and genuinely interested in trying to figure things out for Ricki and she wasn't even her patient yet.. 

Ricki continues to have migraines every day, is nauseous,has pains in her chest and back,tires easily, has daily stomach issues, hot flashes, and seizures almost daily as well. We are hoping to at least get a better understanding of what is going on and hopefully some solutions to improve her quality of life. 

Now we just have to figure out how to get there and where to stay. It will be fun to try to figure out all the details. I was visiting with a dear friend at church today and she encouraged me not to worry and that things would work out. I appreciated her faith and assurance. It was just what I needed. It was just a few months ago when the president of our women's organization at church picked me up and took me for a ride to see how Ricki was doing.  As we visited she asked "Janine if you could do anything for Ricki what would it be?"  I told her I really wanted to get Ricki to a specialist who knew more about NF2.... Since then little miracles started happening and now we have an appointment to work towards! 

I know Heavenly Father hears and answers our prayers and that he will give Ricki the medical supports she needs as she looks to her future. We are so grateful for the many prayers in her behalf over the past few years. We are grateful for the blessings of added peace and strength we have received as we have traveled on this journey with Ricki and know we have not been alone. 

Miss Cache Valley

This summer when they were granting Ricki's wish through Make A Wish they have them go through questions that lead them to "If I could be anyone who would I be?" and " If I could go anywhere where would I go?" Her response to the who would you be was "I want to be Miss America" 

This fall Ricki approached us to be in the Miss Cache Valley pageant in November. Knowing her love of pageants and desire for opportunities to serve we agreed.  She had grown and matured over the years and had learned to push through her pain and we had confidence she could rise to the occasion. It brought us to tears several times watching her determination as she would practice her dance for her talent and then be so sick it put her right down in bed for several days but then she would be back practicing her dance again in pain, exhausted, but determined.  

The week of the pageant approached and her dad and I were concerned.  We prayed throughout the week that she would have the endurance she needed to reach her goal of being in the pageant. Her sweet grandparents and family jumped on the bandwagon to give Ricki all the support she needed.  Ashley, our sweet daughter-in-law came to the rescue as Ricki's hostess and was able to help Ricki get through the pageant smiling to the end. During the pageant many I am sure were critiquing any small imperfections in her walk,  or in her talent, but as we watched our sweet daughter, every step, and every smile was a triumph for Ricki. As I sat next to a lady during the pageant she was critiquing all the girls walks during the swimsuit part of the competition. Ricki was a little more off balance than usual and little did people know she had just had a seizure in a room downstairs minutes before and had pulled herself together to go out on stage in high heels and a swimsuit and walk with a smile across the stage. I think if people knew what she was going through they would know how really amazing she is - but that is not what beauty pageants are about and Ricki was not about to let anyone but her sweet sister know what she was going through. Even after the pageant Ricki asked me not to say anything about the seizures she had that night but as a mom I want others to understand why she is so amazing in our eyes. When Ricki has seizures her legs are the first thing to go and they become like jello. So, for her to cross that stage after a seizure was an amazing feat of strength and determination. 

We are all so proud of Ricki! What an amazing young women she is becoming! She has grown in grace and confidence as she has participated in the Miss Cache Valley pageant over the years. It has given her something to look forward to when she has had some challenging health issues with her NF2.  In our family she will always be our Miss Cache Valley and our Miss America, She represents what life is about- enduring gracefully through pain and hardships  and knowing that true joy comes from finding ways to serve and help others along your way.