Just another trip to Primary Children's

It was a beautiful day for a drive. We went to behavioral health for an appointment with Dr. Buckley. Ricki had gone to school this morning and was wiped out and slept the the whole drive down so I was thinking as I was driving  ... a random fact - Last year we made this drive over 76 times to all her different doctors. So that makes it so  we have traveled just under 7000 miles to doctor appointments in 2015...crazy! 

Anyway we had a nice visit. It has been one of the best things we have done to find a good psychologist for Ricki as she faces the many challenges of NF2. She was feeling up to the Disney store afterwards but by the time we got home her pain was going through the roof. She takes nerve pain meds but it doesn't take all the pain away.  Tonight we put lidocaine ointment on her left hand to the fingertips, on her arm, on her neck,shoulder, and left back. It doesn't really help much but it seems  to take a little of the edge off. She went to sleep watching the Disney movie Descendants, the music calms her soul and brings a smile to her face. It is the perfect diversion. 

Exciting Progress

Even after 3 weeks Ricki continues to have nights when she can't sleep because of the pain.  She has however blossomed with this new found determination that the pain is not going to control her life. She has been determined to get out and to take control of her life. She has been trying to attend school as much as she can, going to her ballroom dance lessons, and continuing to find joy in her life. 

Ricki is a junior and has not been to a prom yet and really wanted to attend. A sweet young man in our neighborhood discovered she was wanting to go and asked her. He was the perfect date! She had so much fun all day Saturday that she slept most of Sunday,  Monday and Tuesday and said it was totally worth it. Nthere we're many who were instrumental in making it a special night for Ricki and we are forever grateful to those who helped her dream come true to attend the dance. 

Posts from Ricki's Brachial Plexus Surgery

March 29, 2016

Ricki is doing great! Dr.  Mahan said surgery went well. He felt he was able to get most of the grapefruit sized tumor. She is awake and they are working to manage her pain.  It does my heart to to see her smile a little.  One of the first things she did was to quote from the Zootopia movie...the first thing she asked for was her stuffed Flash! She was excited to have a sweet friend Keitra Jane come for a quick visit and bring her flowers. 

March 30,2016

Ricki is resting for the first time since her surgery.  She had a rough night and the day has been rough so far.  

Today seemed fitting since it is Natioinal Doctors Day. Even though Dr. Bollo had a full house of family from out of town (including 15 little ones ) he took the time to research and address some of Ricki's concerns.  Dr. Mahan came by also and sat and visited he for almost 30 minutes. Dr. Buckley came and spent another 30 minutes with her. Then in addition to all that she had Dr. Bollos assistant Sid come buy and her pain management team checked on her 3 different times throughout the day.   Yes, we love Ricki's doctors!

March 31,2016

We are feeling blessed. prayers are being answered. Ricki had a much better night and they wee pleased with her improvement.  She is still in a lot of pain. The most exciting improvement was that she had some feeling in her left hand and was able to wiggle her fingers just a little!  She is missing her dogs Oliver and Dixie and is motivated to get to go home and be with them.

April 1, 2016

Ricki is amazing! We are coming home today! Even though she is still in a lot of pain she is pushing though it.  Last night she couldn't sleep because of the pain again so we spent all night watching Disney shows. Disney seems to be her beset pain medicine.  One of her favorite disneyland rides is Splash Mountain and she loves the song " Zippity Do dah"  I saw a little saying and it made me think of Ricki..."I am totally lacking the " Zippity" part of my "do dah day"  I love the sense of humor Ricki finds even when things are tough.

April 2, 2016

Today has been a tough one for different reasons. A year ago Ricki and I had the opportunity to attend an NF forum where Ricki was able to meet for the first time others her age with NF2. There was a sweet gal that went out of her way to speak with Ricki and would always find us and sit with us. She would pull her pad and paper out and start a conversation. We were inspired by her kindness and encouragement to Ricki. We found out today that she had passed away. It was a tough reminder of what NF2  can do and take someone so young. 

She is loving being home with her puppies and they are giving her some much needed comfort.

Angels watching over

As we were waiting during Ricki's surgery I came to the realization that it would have been Ricki's grandpa Jensen's 100th birthday the day of her surgery. It warmed my heart because when she had her first brain surgery it was shortly after he had passed away. During that time we had felt he was near and again felt a special connection that he was looking out for Ricki once again. 

March 29,2016 Brachial Plexus Surgery

The life of Neurofibromatosis type 2 continues to be quite the adventure.  Even with wonderfully skilled surgeons it never seems to get any easier sending your daughter off for surgery to have a tumor removed. From our experience it always comes at a cost to our sweet daughter.  They had us walk her to the hall of the operating room and give her a hug goodbye. She had an amazing red headed nurse that reminded her of her brothers. He was cheerful,and had a sense of humor. He asked her what her favorite genre of music was and she said "Disney" of course .. He asked he if it was like Hanah Montanna and she let him know it was more show tunes like Lion Kimg. When she got into the operating room they had "Lion King" playing.. It cheered Ricki's mood and they continued to make it light hearted and fun before she went off to sleep. Rick and I waited from about 7:00 a.m. until about 2:30. Dr. Mahan felt the surgery had been very successful. One of his biggest concerns were her lungs. The tumor was sitting right on top of her left lung. He said one of the best moments in her surgery was when they pushed air into her lungs and her lung filled showing there had not been any damage to her lung.  One of their other concerns was damage to her nerves. Dr. Mahan did say that he thought he had got most of the tumor. There was an area where there were a lot of nerves and he couldn't tell if they were just swollen or if there was tumor tissues mixed in with them. He said if it were tumor tissue he wouldn't have removed it anyway because of the damage it would have done. She did lose some function in her left hand but they are hopeful it will come back.