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.

Young Women in Excellence

It has been a good day for Ricki! She made it to school and even had the stamina to attend an activity for the young women at church.  The evening was to celebrate the goals and talents the young women have been working on this past year. Ricki has been working on the young women's value of knowledge .  This is what she presented.."Over the past year it has been really hard for me to obtain knowledge.  At times my education seems hopeless but lately I've been spending time learning to play the piano.  It has helped me relax when I've been stressed and I've been getting better with my schoolwork. So I just want to say that even when things seem hopeless, know it can get better and God loves you!" 

Another day of headaches

Ricki woke up to another headache. This morning she also had another goose egg on her forhead. She has had several over the past weeks just pop up for no reason but they haven't hurt. Today it was painful. Since she had such a good day yesterday I tried to push her to get to church to see if she could pull out of it but I only made it worse.... It is so hard to know what to do for her. This week has been tough emotionally as well for Ricki.  She is tired of being sick and missing out on normal teenage stuff.  I was watching a video a family put together about their experience with their son that has Neurofibromatosis type 2. They were asked if they could pick one word to describe Neurofibromatosis what would it be? The mom said "unpredictable" and their son said "miserable". I would have to agree with them both.  Hopefully tomorrow will be a better day.

Holding our breathe

What a relief today has been. It feels as if we have our Ricki back!  There have been no tears and she has been laughing, smiling,singing and in such good spirits all day. It is the first day in over a month she has had this much energy and actually wanted to go out and do something. It was a beautiful autumn day and we thoroughly enjoyed getting out and soaking up the sun. It has reminded me of the importance of cherishing each day and all the simple and sweet experiences that we have with each other on a daily basis. We will hold our breath in hopes that whatever was causing her so much pain this past month has passed and that she can continue to enjoy this beautiful autumn we are having.

Wishing I could make it better

I was so excited today because Ricki had made it through a full day of school. We know it is not an easy thing for her and are so proud of her determination to keep going.  After school before I even made it out of the car she was at the front door waiting. We got in the house and discussed her day. It had not been an easy day for several reasons..she still was not feeling well, her head had been hurting  all day, and her new medicine is really affecting her memory making her classes very stressful. She just wanted a hug. She looks into my eyes with her sad and longing eyes that say "please make it better" ....and my heart feels like it is going to break because there seems to be nothing I can do but give her another hug and hold her tight. She fell asleep early this evening and we are hoping a good nights rest will hopefully  "make it a little better" 

Hopeful Hearts

Last week was a long week.  Rick and I shed a few tears over knowing how to help our sweet daughter. We had taken her to insta care, to the emergency at primary Children's hospital and then stayed four days at the hospital having 2 MRI's trying to figure things out to lessen her pain. Then we went home only to have her in pain the next day.

 The next week we found an integrative health person to take Ricki to and she felt better for a few hours after the visit. What a relief when she started getting up and talking of school.   We felt our prayers were being answered. The timing was perfect for her improving health.  She had asked a wonderful young man to the Sadie's  dance at the school and through the help of some sweet friends that went the extra mile Ricki was able to get to the dance. She had so much fun and came home on cloud nine talking more than she had all week. We have seen over the past 18 months that it has been those sweet acts of kindness that have given her the needed strength and hope to face her challenges and rise above them. I am gaining a greater understanding of the power that love and kindness can have in one persons life. 

Some answers

It is a humbling thing knowing the many prayers that are being offered in behalf of your daughter. Wednesday morning Ricki 's neurosurgeon gave us the good news that the MRI of her spine didn't show any cause for her headaches.  She had some small growth of one of her tumors but it was nothing that we needed to be concerned about for now. We feel so blessed for her tumors to have remained stable.  As a mom I am still trying to understand how to maneuver around in the medical world trying to understand all the medical terms and what the mean for Ricki. 

When they released Ricki from the hospital Wednesday night she was not having any headache pain but by morning the headache had returned.  The told us they felt that because Ricki had been taking so much ibuprofen for her pain that now it could be actually causing her headaches so we are not to give her ibuprofen for her pain.  Instead they have started her on an ant-seizure medicine and then up to 3 days a week she can take a combination of Benadryl, zofran and Aleve.occasionally she may also take a migraine medicine when she feels a bad one coming on.  So, for now we are back to enduring the headaches. Ricki is a good sport about the whole thing. She amazes me with her positive attitude and determination not to let it get her down.  I have much to learn from her!

Another day at Primary's

Ricki's brain MRI was an adventure. Monday morning first thing they took her down for an MRI. When they started the machine it was vibrating the bed she was laying on and the tech kept asking her why she was wiggling so much..it turned out the machine was broken so then Ricki got to have a 2nd MRI. The scans came back and the drs reviewed them and they felt there was nothing showing on the scan that should be causing the pain. Throughout the day the medicine they gave her only put a small dent in the pain. She was a trooper all day. The team of doctors decided they also wanted an MRI of the spine so she will be going in this morning for another MRI.  They doubled up her medicine last night and basically knocked her out so she has been sleeping since about 8 last night. It was a very peaceful night. We will see how she is doing pain wise when she wakes up.  

Ricki went with us to the healing garden yesterday for a break from things.when we got there they had pumpkins to paint.  She started painting a pumpkin because she loves tha kind of stuff but wore out quickly and intends to go back hopefully today to finish it.

Primary Children's Hospital

We find ourselves again at Primary Children's Hospital. Ricki reached her limit last night with her headaches.  She is such an example of faith and endurance.  I knew she was reaching her limit when she got up willing to get ready for church and asked me if I would please wash her hair..it broke my heart because she cried almost the whole time saying she wished she could just feel better.  She had had a wonderful time the night before with the pageant and had received the Miss Compassionate award ( which was so fitting for Ricki- she has a very kind and tender heart). I thought that the following day would be a day of more improvement or she would be worse than she had been before.  Unfortunately it was the latter.
She insisted as the night went on that she was done trying to fight this on her own. From the minute we walked in the door the Staff at Primary Children's have been wonderful.  They all have such a tender way that is calming not only to the children but the parents. Ricki has been poked and pricked in a lot of facilities but her favorite by far is primary children's ...when they put her IV last night she was so excited that she had hardly felt it.  It seems a small thing but to children it is pretty huge!  They gave her several things and she has been able to sleep peacefully for several hours. She is scheduled for an MRI at 7:00 a.m. This morning. They will take a look at that to see if there is causing the headache and then go from there. My prayer is that they will determine how best to help Ricki just not for now but that it can be more of a long term fix to her headaches...that is my wish, but I am learning with Ricki that there is usually no easy fix. It is about being enduring as comfortably as possible and realizing the blessings of life and all the good in the world.

Miracles come from kindness

 I am feeling so grateful for the kind hearts and the sweet service and inspiration of several families who put together a pageant to cheer and bless the lives of some very special young women,  Little do they know the little miracle they had a big part in.  Ricki was excited at the invitation to be in the Miss Radiant pageant with other young women who all  have different challenges that they are facing in life. Ricki loves the opportunity to dress up and feel special and was especially excited at the thoughts of being in a pageant that celebrates their beauty without the stresses of the competition part of it. She has been planning what to wear for weeks and was thrilled at the thoughts of being pampered.  After several days of severe headaches this week it was looking like we might have to take her to Salt Lake. Ricki cried at the thoughts of even having an MRI. But, a little miracle happened. When she started thinking of the pageant Friday night and what she needed to do she started to improve and by Saturday morning she was doing so much better! She found the strength and smiles to make it happen. All her brothers and sisters were there to support her and it was a sweet and inspiring night.

Wilson replacement

Ricki  made me laugh when I went to check on her tonight. She had a cute smile on her face.  She pointed to a brown striped blanket that she had all curled up next to her legs. She pointed to it and asked if I liked her replacement for Wilson! She is such a creative soul in finding solutions. 

  She has found some relief tonight and was up and about for awhile. She is such a trooper. I was amazed when she was referring to her headache she said "now it's more like my headaches when I had my tumor...it still hurts really bad but at least I can do things"  As a mom my heart aches not knowing how  to help her, wishing I could help her. Instead, she is helping me to learn much about looking for the good, about endurance, strength and the determination to keep going. I know she is pushing herself tonight because we have family pictures tomorrow and then she has a Miss Radiant pageant that she is looking forward to doing in the evening.  She is excited about this pageant because it is unique.  It is not  a competition...it's a celebration. 

She has a big day ahead of her so hopefully she can sleep well with her Wilson replacement snuggled up next to her and have sweet dreams. 

Missing Wilson

Whenever someone was sick, sad, or down our dog Wilson had a second sense and was always there beside them. After our last trip to Primary Children's Hospital when we arrived home Wison gave us our usual warm welcome but we didn't see him slip out of the house and when we found him he had been hit by a car. 

We have all missed him but Ricki has especially missed him the last few days since she has not felt well..missing having him to snuggle up to and give her that sense of security that everything will be ok. This afternoon we had fun dreaming and looking at all the hypo-allergenic dogs.. Nathan has asthma so we dare only dream of ones that he could be around.  I loved my time snuggling up with my daughter sighing at the really cute puppies like the schnoodles and then giggling at the not so cute hairless dogs...being sick is never fun but it does force us to slow down sometimes and just enjoy being around the ones you love! 

Ricki is still pretty miserable and I am amazed at how determined she is to smile and keep her mind occupied on other things rather than dwelling on how miserable she is feeling. We moved her next MRI to the 22nd of this months in hopes of finding what is causing her headaches.. She has found a little relief tonight and we are hoping it continues to improve so maybe she can go to school tomorrow - and she won't be having to miss her snuggling buddy Wilson.

From a tough night to a sweet and peaceful evening

Ricki has had a few rough weeks with a headache that has just kept getting worse.  Over the weekend she became even more nauseous and wasn't eating. It is so hard to know what direction to take because well we sometimes feel like the boy who cried wolf because we take her to the doctor and there isn't anything they can do for Ricki.  After a long night with her head hurting and feeling sick she determined she wanted to go to the doctor. Of course her doctor was out of town so we ended up taking her to insta care.  The doctor and nurses there were so kind and sweet! They were able to contact our neurosurgeon and make a plan.  By evening her pain medication was working and we were able to enjoy a relaxing evening together.  We received several e-mails regarding Ricki from the doctors throughout the day.  It was a sweet reminder we are not alone and have wonderful doctors who care. It is hard sometimes to face the unknown but I am beginning to think one of the lessons I am to learn is to not worry what the future holds but cherish each day because every day is filled with sweet little miracles. Today's miracles....we enjoyed watching and giggling during the movie "Princess Bride" Other little miracles....sweet and caring nurses, wonderful doctors, the miracle of modern medicine, and especially the loving support of family, friends, and coworkers. 

Save the Date!

Put the date August 23, 2014 on your calendar! Come support Ricki in her endeavor to help find a cure for Neurofibromatosis  at the NF walk at the beautiful Sugarhouse Park at 1500 East 2100 South Salt Lake City. If you want to just show up registration begins at 8:00 a.m. Or to register ahead of time go to the Children's Tumor Foundation site and register under Ricki's team "Cache Valley Cares"  at http://shar.es/LStqB. 

NF camp 2014

Ricki was so blessed to attend NF camp this year! It blessed her life in so many ways! She enjoyed meeting other kids from all over the world with similar challenges and even some with tougher challenges than her own. She gained confidence as she experienced new things and did team building activities. She came home with more confidence in herself and in her future.  She came home a stronger hero...thanks again to all those who made this dream for Ricki possible! 

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...

Restful evening

Friday started out a little rough. This has been a little different from her brain surgeries in that we have a doctor that specifically works with Ricki for her pain management.  She was in a lot if pain until later this afternoon.  They seemed to find the right combination of pain management and Ricki was able to have a peaceful nap later this afternoon.  The rest of the evening she has been in pain but it has been a little more manageable.  She has even had a sense of humor...her heart monitor was showing a pretty fast heart rate and I asked her if her heart was racing. ...Without even missing a beat she said yes, and it is going to win the Indi 500!  it made us all laugh - mostly because her response was so unexpected. 

 She has enjoyed a few visits  from family and one from a sweet worker here at Primays that holds a special place in our heart.  She took such good care of us almost a year ago when Ricki was life flighted here to Primary Children's.  Bailey went above and beyond in helping us through a tough time. 

The evening was peaceful and she slept peacefully until about 2:00 which is an improvement from the night before. Each day continues to get a little better.  Tomorrow should be an eventful and good day.

Miracles that are easy to see

Some miracles are very evident and easy to see.  Other miracles require time, patience, and a humble heart to be seen.  Over the past 11 months we have been blessed with both types of miracles. Today has been a sweet experience to watch some of those miracles in the life of Ricki unfold.  Yesterday we came down to Salt Lake and had an enjoyable afternoon but after finishing up her lab work for her surgery she just came unglued. She began crying and couldn't stop.  We texted one of our sons to see if he was available to help Rick give her a priesthood blessing.  He came right away and helped give Ricki a blessing. A sweet peace came over her and she has remained peaceful and calm ever since.  Even when the nurse called to update us from the surgery room she mentioned how calm and peaceful Ricki was this time.  She had been Ricki's nurse two other times and recognized a difference in Ricki.  The surgery went perfect and she responded well to the doctors care.  In post op when we first arrived she was in a lot of pain but once the pain medicine kicked in she was alert,smiling, talking and even wiggling her toes and feet. She has never been like this so quickly after any of the surgeries she has had.  She was moved to her room and was doing well but was getting progressively worse. Her pain was increasing, her face became pale and swollen, and she was sweating and cold to the touch. Ricki's Dr came about that time and was instrumental in getting things turned around. There has been a sweet spirit in her room and she continued to handle the hard things with patience and grace. There have been many praying for her today and we received a day of miracles that were evident and easy to see. I also witnessed a small miracle that has required time,  patience and a humble heart.  The grace Ricki has displayed today was a miracle that has been made manifest over a period of time as she has learned patience and an inner strength to face the challenges placed before her in her life. Today we have felt so blessed and are grateful for the many miracles and tender mercies in our life. 

Upcoming surgery

It is quiet in our home tonight and no one is packing for tomorrow.  None of us really want to face the reality of another surgery. This will be Ricki's 4th surgery in 11 months.  We will be going to do

her pre-op stuff at the hospital tomorrow afternoon and then surgery Thursday morning to remove the 2 tumors inside her spinal cord.

  Instead ...we are enjoying looking at pictures of the past few weeks and enjoying the fun memories.  Feeling blessed.

Spring Update

We are all enjoying the sunshine again! It has been so good for Ricki'spirits!  It has been a tougher winter than we had anticipated.  When we discovered that she had lost all of her hearing in her right ear it broke all our hearts. To top things off she has  had a lot of pain and just not felt well. She has had some sweet acts of kindness that have been a welcome diversion for her.  In March our Ashley (Jason's sweet wife) helped Ricki participate in the miss cache valley teen pageant.  She had fun practicing her drawing skills for her talent.  But I think her favorite thing was dressing up and feeling like a princess.  Another fun diversion for her was just last week.  She loves the show "Downton Abby". Her youth leaders and friends put an amazing party together.  She had a beautiful dress to wear with gloves and everything.  It was like she was living  one of the parts in the show.  It has been fun to see a little more life in her again lately.

Today we are at primary children's hospital getting her dental work done.. She has struggled with letting them work in her mouth. Our Stevens wife Abby, works for a wonderful dentist that does some work at the hospital and was willing to work on her teeth.  So today we find ourselves at the hospital today but just for a short visit. 

Ricki's next surgery will be April 10. This one will be to remove a couple of tumors that are putting pressure from inside her spinal cord. Our surgeon was hoping they would give the ok to remove the tumor in her chest at the same time but the board of pediatric surgeons didn't feel it was prudent at this time.  So they will keep an eye on it will keep doing her MRI's every 3 months.  

Today it was a beautiful day in Salt Lake and we were able to enjoy the sunshine and the beautiful flowers. We are so grateful for the beautiful world that we live in especially in the springtime it makes each day a little sweeter! 

  

No more headbands!

This past week a sweet hairstylist Julie, from Serendipity Salon in Logan offered to do Ricki's hair.  Ricki has sported hats and hair bands to cover up where she has had surgery.  Her first surgery required them to shave  a 2 inch wide band of her hair from ear to ear.  Her 2nd surgery required a wider band of hair to be shaved on the right side of her head from her ear all the way up the side of her head. As a determined teenager Ricki has done a great job with her hair using headbands so it was not obvious. As her hair has grown out she has tried several things but her hair would just lay funny because of all the different lengths and thicknesses she had going on and would go back to a headband.

After getting her hair done she was so excited! No hair bands and her hair looked beautiful! I stopped counting the times she said that it was nice to feel "normal" again.  The smile on her face is worth a thousand words!  Thank you Julie for helping my daughter feel normal after some pretty crazy months in her life!