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. 

Tired

Ricki tries to keep upbeat and positive and she seems to find something each day to smile and laugh about. She has had a headache for the past  2 1/2 weeks and even with the lights hurting her eyes and the sound of people chewing food irritating  she ends each day with a smile and a hug. We sure love her sweet spirit! 

We haven't been able to figure out how to manuever around in the medical world to get Ricki the helps she needs.  It is developing our patience as we call and leave messages...wait, call back, wait again...trying to help her find some answers and relief from the migraines. 

Tomorrow will be a new day and we will keep trying our best to help Ricki and I am confident when the timing is right we will be blessed with the answers and help she needs. 

A Journey filled with Beauty

It was a wonderful night at the pageant with so much love and support. These two friends started this journey together a year ago.  Ricki was recovering from 2 brain surgeries and a vocal chord surgery and was facing yet another surgery to remove 2 more tumors in her spinal cord. Unsure of what her future would hold she determined she wanted to participate in the Cache Valley's Outstanding Teen Pageant. Some of the teens dropped out and there wasn't going to be enough participants. Ricki's friend Emily joined the pageant to support Ricki. Emily went on to become Miss Cache Valley's Outstanding Teen, giving her many service opportunities and Ricki  faced her road to recovery with grace and much determination.  Though this past year has taken them on different paths they both finished this journey with more confidence in who they are and with greater abilities to love and lift those around them. I am so proud of the beautiful young women they are becoming.

It's Nice to Be Normal

What a wonderful week it has been! Rick and I have been in awe of Ricki this week. She is an amazing young women with such determination and strength.  For the first time in months Ricki felt well enough to attend school for the full day every school day last week. To many, this is an easy every day occurrence but for Ricki it is a little miracle! One day she came home so excited saying "it is so nice to feel normal" she has had minimal pain and more energy than she has had in a long time. There have been no complaints of her stomach hurting, nauseousness, or pains in her arms.  It appears that this new nerve pain medicine is working for Ricki. We have our fingers crossed that it keeps working...Her only complaints for the week have been having a headache twice, the tumor on her leg has become very tender, and she lost the feeling on the right side of her lower lip. She has also had a rash that has come and gone but it hasn't seemed to bother her much. Overall, Ricki has had more energy and has found joy in the simple things of life this past week.

Ricki's eyes always light up when she has the opportunity to work on pageant things. We have had such a rough couple of months I was not going to let her do the outstanding teen pageant this year but, it brings such a light to her eyes we couldn't turn her down and decided to let her participate again this year. Saturday she was in seventh heaven because her grandmother bought her some fun shoes with "heels" for the pageant. She is growing up into a beautiful young women!  She had practice for the pageant and they let me go in and record her practice interview. It was exciting to see the improvement she has made in the past year. Being a part of these pageants has helped her in regaining her communication skills and increase her confidence that she can do hard things. She has been practicing her talent..this year she is going to do a tiger to the song "eye of the tiger".  So here we come sparkles, make-up and all the bling!

First visit to Primary Children's Hospital in 2015

As we begin a new year we are so grateful for the wonderful hospital staff and doctors that have cared for Ricki since her diagnosis of Neurofibromatosis Type 2. Today we watched again that same care  and kindness as she went in for an EGD ( scope of her stomach). She has been having stomach pains and nausea daily for about 3 months. They did the scope to check for tumors in her stomach and we were excited they did not find any evidence of tumors. It still doesn't explain the pain but we can eliminate that possibility. She had a wonderful anesthesiologist..I think it was a dr. Clark. She is a little tricky to work with because of her vocal chord reintrvention and he took great care in protecting her vocal chord and didn't even complain of a sore throat! 

So... Back to her stomach pains - Her neurosurgeon Dr. Bollo thought there was a possibility that it is being caused by some of her tumors on her spine and gave her a prescription for Neurontin ( a nerve pain medicine) it hasn't helped yet but we are still hopeful. 

We were just finishing up the night when she discovered another bump on her left forehead..she has been getting them off and on since the middle of October. They just show up and go away usually within a day. When we went to our geneticist last month he told her she was a puzzle. We have laughed because later she said to us"I wish I were just a 5 piece puzzle instead of a thousand piece puzzle" She is such a sweetheart.