Service Club 2015

Ricki was excited that in December she was able to meet her goal of donating over 1000 items to Primary Children's Hospital in 2015. Ricki has been so blessed by the service of so many! She has loved her stuffed animals that have given her comfort and each sweet blanket she has received has been like being given a hug in the hospital. She loves and cherishes each of them. Ricki has also has been so grateful for the many craft projects that have kept her mind occupied during her stays at the hospital.  

Recently,  while waiting in the waiting room we were watching a mother with some very cute and lively girls. A volunteer brought a cart of projects for the girls to chose from. The smile on Ricki's face was bigger than the little girls faces when they picked a bag that had markers and coloring pages of some disney princesses. They were some of the kits Ricki had organized and put together.  The little girls sat down and were kept busy the remaining of the time we were in the waiting room. Another time we were in the elevator and they had the cart filled with projects to deliver to patients and Ricki smiled when she saw more of her craft kits on the cart. 

What a sweet experience it has been to be giving back after we have received so much!

Wrapping up 2015

I will try to catch up our blog with Ricki's NF2 journey.  The last post left off with Ricki having several seizures an hour. We spent the summer going to primary children's a couple times a week with dr appointments and pain management sessions. Her seizures slowly but surely came less and less. Knock on wood she is down to several seizures  a week.  She still gets twitches frequently on her left side but  the dr feels they are probably caused by some of the tumors on her spine. 

Ricki has become pretty amazing at handling her pain. She has found outlets to take her mind off of her pain. She loves to draw, look at designs, watch disney movies, and she also started a service club that she found much enjoyment in.  

In the fall we were excited for her start back to school. She was attending half days and was attending almost every day.  She enjoyed feeling like a normal teenager again. She started participating in ballroom dance and found much enjoyment in it. Ricki loves music and also started taking voice lessons.October came and she had her MRI and everything was looking stable. Her headaches were down to 1-2 a week and we were feeling optomistic and happy things seemed to be settling down. 

Just before Thanksgiving she began having severe pain in her back,chest and left arm. It was painful to move and when she did it even hurt to breathe. Suspecting it was nerve pain they increased her nerve pain medicines but it didn't give her any relief. They determined they needed another MRI. The first MRI they used sedation hoping to ease the back pain long enough to get the MRI but even in a deep sleep she was in such pain she kept moving and they were unable to complete the MRI.  This MRI it took them 4 tries to get in her IV and I was so impressed with how she handled it! Tears came to her eyes but she kept a smile on her face.  What a long way she has come! That has not always been the case. The next week they completed the MRI while she was under anesthesia and it worked much better. Upon reviewing the MRI we discovered she had a couple of new tumors forming and that the tumor in her chest was actually putting pressure on the nerves and causing the pain and could possibly be the cause of all the headaches she has been having. They determined however to try yet another pain medicine but even though it took the edge off she was still not able to sleep well at night and when she moved about it becomes very painful. 

They have recently determined that surgery might be the best option to improve her quality of life. It is pretty sad when your daughter is happy about wanting to have a surgery. She always grabs her shoulder in pain and tells us she just wants it out! 

Our Neurosurgeon Dr. Bollo told us he would review Ricki's Case with a pediatric surgeon and get back with us so we are currently waiting to hear back from them.  From our previous experience it will be a slow process so in the meantime Ricki continues to rely on Dr. Pepper and her pain medicines. 

Still hanging in there

It has been over a week since we were at Primary Children's Hospital. They determined that Ricki was having non-epileptic seizures. The doctors told us the seizures were not dangerous but there was no medications that they could give her to make them stop. The other hard thing is there really was nothing they could do and they didn't know how long they would last. They told us to continue our behavior health appointments and told us to work on some breathing and relaxation techniques with Ricki. It honestly feels that we just have no control and that there are just no great solutions. Ricki's seizures are not quite as severe but there are still quite a few times during the day that they effect her legs and she can't walk. She is amazingly patient as she lays there with her arms and legs jerking around. In fact a lot if the time she will laugh and make jokes. She jokes that it is Pablo that is making her shake. The drs assured her it was a real thing that her body was doing so she didn't feel bad but I think by giving it a name it helps us all cope. Sunday was a little scary...I was washing her hair in the kitchen sink and she passed out. I had to call Rick and have him carry Ricki to her bed...I keep thinking it will get easier but it still breaks my heart when she starts shaking and she just want to hold my hand. One of her therapists that we met with last week thought it would last a couple of weeks...that would be four more days....but it doesn't feel like this will ever go away sometimes. I will be so relieved when it does. But, in the mean time we will enjoy just chilling together, watching movies, and just enjoy having Ricki to hang out with and enjoy her sweet personality. When she gets feeling better I am sure there will come a time that she will be busy and out and about with her friends and I will miss these nights that we have had together!

Soo tired

Much has happened in the past month. Tonight however we find ourselves at Primary Children's hospital again with not a lot if answers. Friday Ricki began by having these twitches in her arm that she couldn't control. We had a family gathering planned for the weekend and thought she would be fine. Saturday she wasn't feeling great. She was having a migraine which unfortunately has become a "normal" thing for Ricki.  Her arm had a few periods of twitches again. Sunday we visited a ward in Midway  where we were staying. We attended sacrament meeting and Ricki started feeling sick. Another "normal" thing in her life. When we got back to the apartment there in Heber she acted like she was going to pass out so we got her on the couch. Ricki began twitching it started with one arm then two then her legs and eventually her head and it seemed as if she was having a seizure. She had several and each one seemed to get worse. After speaking with the neurologist on call at Primary  Children's we determined we needed to get Ricki to the ER there at Heber. There is nothing harder than watching your sweet daughter tossing about and not being able to even hold her...Rick had to carry her to the car because she was unable to walk.  After being at the ER for a time they gave us the option of going home or transferring to Primary Children's. It was easy to chose and we opted to transfer her. We are at Primary's hospital, she is still having these episodes - some are light and some are scary... they do not think they are epileptic seizures but rather stress seizures.. We will find out more from the doctors in the morning. We are grateful to be here and pray to find some answers and relief for Ricki tomorrow.

Miracle Flights for Kids

This week I was able to attend a meeting with some other mothers of children with Neurofibromatosis. Their children all have NF1 but have similar heartaches and struggles. As I was visiting with Our NF chapter president I was telling her I would really like to attend the Arizona conference. She ask if I had heard of Miracle flights for kids.  They help children get airline flights to doctors and conferences so they are able to get the medical help they need. I had been hoping to attend but would need to make the 12 hour drive to get there. If the Miracle flights work out it will take so much of the stress and worry out of going.  

I was also looking on the list of Doctors that will be there at the conference and was excited to find that Dr. Plotkin from the NF clinic at Mass General worked with 121 NF2 patients this past year. Throughout most of the NF clinics in the US the clinics have 0-2 NF2 patients.  I absolutely love our doctors at Primary Children's Hospital but it would be so nice to have someone with more experience give us a second opinion on Ricki's medical condition. 

We continue to hope for miracles and for cures to end NF, but for now getting to this conference could be our own little miracle. 

Humbled by So Much Love and Kindness

Since Ricki's diagnosis of NF2 we have been blessed by so many by their love and support and are humbled by the continued support...A few days ago some sweet friends from work came to me and asked if they could do something very sweet for Ricki. They wanted to raise enough money for us to get Ricki to Disneyland during Spring Break.  I was so touched by their kindness and so many thoughts rushed through my head. ..How can you turn down someone who wants to do something nice? I knew however how much it would mean to Ricki and how good it would be for her. I swallowed my pride and agreed to this generous act of kindness. . I went home that day to tell Ricki but she was having a migraine and just wanted me to hold her and to be close. The next day when I got home from work she was doing better so I told her I wanted to show her something. I pulled up the GoFundMe page that my sweet friend Robin Cooper had put together.  When Ricki saw the title she just started to cry and was so excited....then we both cried even more as we saw the generous donations from those we loved and from those we didn't even know. It has been so humbling to have such an outpouring of love and support. This morning before I left for work she was excited at the thoughts of planning what she was going to wear to Disneyland. It has brought a light to her eyes and something fun to look forward to. Thank You.

Small Steps

"In my distress I cried out unto The Lord, and he heard me." (Psalm 120.)

In October Ricki started having chronic migraines that have been going on now for 4 months. Over half the days of the months she has had migraine headaches.   It has broken our hearts as we have searched and prayed for solutions for our sweet daughter.  After our last trip to the ER Rick and I wept together not knowing what to do.  Over the last week we have slowly started to see some answers to the many prayers that have been said in her behalf.  We have wanted a quick fix to her pain but have had to come to the realization that it is just something that is going to take time and patience. Last week we met with a wonderful Dr. here in Logan that is helping us with a nutritionist and physical therapist and then Ricki had an appointment with a wonderful and compassionate neurologist. He helped us realize that it will be a slow process and helped us set our sites on the smaller steps of her recovery.