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.