GOING HOME!!!

It has been a long few days and we are excited to be going home!  Each hospital visit always come with little tender mercies and a little fun.  Ricki's sloth theme has been fun and it has brought a lot of smiles to those who come into her room..  Angels have been good to look after Ricki and she has always got to get some visits with dogs during her stays. And most important she has had some pretty amazing nurses and techs that have been so attentive and good to Ricki.  Three days in a row we were blessed with the same amazing nurse.  That rarely happens and we enjoyed getting to know Kylee.  One tender mercy was they got all sorts of stuff from the surgery in her hair and Ricki was having a tough time with her head feeling so dirty and not being able to wash her hair till the end of the week.  Kylee and our sweet tech got instructions from neuro-surgery and carefully used a bottle of distilled water and washed parts of Ricki's hair to help her feel better.  The tender mercies and kind acts can't all be listed. In our church meeting we attended yesterday someone spoke and was telling us how her friend that would come and visit commented what a reverent and special spirit she felt when she came.  The mothers response was that she was confident the Savior himself walked these halls because he loves the little children so much.  We have felt his love and the tender mercies that many here are so inspired to give.  We are grateful for such good care and are happy they have got Ricki in a position to go home!

Sweet Visits

Ricki continues to be in quite a bit of pain.  All of our children and some family that live close by have been able to visit or facetime with Ricki over the past few days and it really has brightened her days and lifted her spirits. Ricki gave one of her nephews the bendy toy from her breakfast tray and he was so thrilled and kept saying " You saved this just for me?"  Ricki giggles now when she sees the bendy men because it reminds her of her nephews.  We are so very blessed!   As I was visiting with one of my sons he mentioned how Ricki has been through so much it is not as traumatic but it is sad that it is easy to take it as not a big deal .  He said he had to remind himself that it was brain surgery and that is a pretty big deal.   More than ever  she needs those cheerleaders to cheer her on.  She puts on a brave face but their are many days that are really tough. This past year I  have watched her dig deeper than she has had to dig to find strength and determination.  Over the past 6 1/2 years she has been so strong but this past year her first tears from the fatigue of fighting this battle have been shed.
With each experience I have gained a greater compassion for  all those who experience rare medical challenges where their only option is to endure and the only medicines they have are the healing powers of family, friends and the sweet acts of kindness to keep them going and enduring through their challenges. Ricki may not have a cure but she has loving family that are always their for her and she always seems to get those random acts of kindness from friends just when she needs it. 

   

Slow down

Ricki did not sleep well because of  her pain.  They finally got her on a good pain management regimen and she is doing a little better today and is taking plenty of naps.  Prior to the surgery Ricki decided she wanted to have sloths as her theme for her hospital stay.  In a rushed and hurried world we live in it has been interesting how much I am learning from Ricki as she jokingly tells me to slow down because she is a sloth and goes at a slower pace. We have had fun collecting sloths and Ricki drew a beautiful sloth holding out a rose as if giving it to the viewer of the picture.  I love this picture because it not only reminds me to slow down but to be kind.  

 It was interesting when they moved Ricki from the ICU to the NTU,  Ricki and I were coloring and the nurse walked in with the tech and just started unplugging everything and moving the bed out the door. It surprised us because Dr. Brockmeyer had come in earlier and said Ricki would have her MRI before we moved to the NTU so we were caught off guard.  I reminded the nurse that we needed to slow and and move like a "sloth"  but  she didn't I sensed she was stressed  and it ended really throwing us all for a loop as we were frantically trying to gather everything up and not forget anything.  Even as they were rolling Ricki's bed down the hallway there was confusion as to what room they were taking her. (The room they had written on the paper was to the infant unit) That would not have been a good thing having an incredible headache and having sweet babies in pain crying... Not a good combo. 

 Long story short I learned a good lesson this morning that even when we feel in a hurry we need to take a breath and slow down.  Everyone benefits.  My dad over the years always loved sharing what he was learning from the scriptures and I have always remembered him telling me you never read anywhere that the Savior was rushed or in a hurry yet he went about accomplishing great things and blessing many.  

Going through this Journey with Ricki is challenging but we continue to be blessed as we learn much from Ricki and her sweet example of endurance and patience and even the value of slowing down. 

Successful Surgery

The Surgery went well!  We love Dr. Bollo and are so grateful for his care of Ricki.  When he came and reported they were finished he said they had monitored her vision nerves carefully during the surgery and felt there were no complications.  He said the tumor resection went well and will be monitoring her and she will be thrilled (not) that she will have another MRI tomorrow of the brain to ensure everything is still looking good.  I will hold my breath for just one more night.  The first night after brain surgeries is always the most difficult time. So once we get through tonight I think we should be sitting good.  Thanks again for all the many prayers in her behalf.  I know angels have watched over her and that we continue to see miracles daily in our life! 

Slow but Sure

Today we are back at Primary Children's for Ricki's 3rd brain surgery. Ricki has several brain tumors that are growing slowly but sure. The one on her ocipital nerve has been causing some visual disturbances and increased migraines and Dr. Bollo is feeling it is time to get it out before it becomes even more difficult and the risks of damage increase.  Before surgery he was feeling pretty confident that the tumor should come out fairly easy and it should not be a complicated surgery.  So here we sit in the waiting room.  It is always a little nerve racking to be one of the first ones in the waiting room and to watch families come and go.  We are grateful however for the peace and strength we feel for the many prayers in Ricki's behalf and know that God is watching over her.  We will post more as we get the results from her surgery

 

Overdue Update

It has been a long time since I have updated Ricki's blog.  The challenges of a chronic illness never go away but sometimes it is just nice to not think about it.  Ricki has some challenging mountains to climb in the coming weeks and we reconginze that we need the faith and prayers of all of our friends and family.  This doesn't have everything but gives you a bit of what Ricki has been through this past couple of months

August 3, 2018
We received word from the neurosurgeons that they want to do a biopsy on the aggressive brachial plexus tumor on Monday, She will have the neck surgery to remove the tumor in her c-1/c-2 Tuesday the 7th, and then she is scheduled for surgery to remove the brachial plexus tumor  the following week on the 15th.  

July 2. 2018

In the past month we have been to 17 different appointments for Ricki. Her legs continue to become week and totally go out on her. They began by lasting an hour but as the weeks have gone by she can't walk sometimes for up to 12 hours. It is breaking our heart. We have been to our neurosurgeon,neurologist,EMG specialist,psychologist, psychiatrist,urologist,physical therapist and occupational therapist. We have sent her images to our neurologist and neurosurgeon in Baltimore and still are trying to figure out her c-1 tumor. A t-12 tumor. A possible brachial plexus tumor regrowth, and the handful of tumors in her quada equine all of which could be We are scheduled for yet another MRI and another EMG to try to assist the doctors in putting the puzzle pieces together. 

June 15, 2018

I just have to brag sometimes....yesterday at Rickis EMG first they put these little patches on different nerves and shock her to see how the nerves respond. From that information they know where to focus and they get more information from how the muscles respond the the shock by putting a needle in the muscle and shock her again. As the neurologist was working on Ricki he was amazed at her strength. He said he had never seen a patient so STOIC ..I had to go home and look it up. The definition is a person who can endure pain or hardship without showing their feelings or complaining. He was telling us he had grown men covered in tattoos having this same test bawling and yet Ricki  was holding it together and occasionally cracking a joke. She told the nurse sarcastically if she could paint a picture of a perfect day this would definitely be  it.... It broke the intensity of a moment and made us all laugh. I know that it is her sweet faith in God and the many prayers in her behalf that help her endure what she does. I am so proud of her!  The heartbraching news however is that her left hand is becoming paralyzed.

June 4,2018

We met with neurosurgery today. Ricki is scheduled for surgery to remove a tumor at the C-1 level  in August. There are still puzzle pieces that we haven't got figured out and will be meeting with her neurologist to try to figure some more things out for our sweet Ricki. It's been awhile since we have seen Dr Bolllo and his staff but it was like seeing old friends we hadn't seen in a long time. We are grateful for such wonderful people to help us take care of our daughter.

May 28, 2018

They were unable to get the MRI crew to come in so it looks like we will be here another night with an MRI tomorrow. Ricki seemed to be walking ok this morning but when we attempted the stairs it became very difficult. Later in the morning both her legs went out completely again.... I keep hoping it will just go away but it doesn't appear it is. The highlight of the morning was a FaceTime call. Technology is the best! Nothing like brightening up your day with 3 smiling faces.

May 27, 2018

Ricki's legs have been giving out on her several times today. Oliver was sure his slobbery wet ball would make Ricki better but the Drs at Primary Childrens felt like they need to keep her for observation and get an MRI tomorrow. They have had some serious emergencies so we are waiting for them to get her admitted.. We are driving poor Ricki crazy with our old people humor.

The exciting Life with NF2

It has been 5 months since Ricki's surgery at Johns Hopkins. We feel so very blessed how quickly she has healed and continue to be humbled by the sweet love, support and many miracles we have experienced along the way.

Physical therapy when she got home was not her favorite but she recognized the value in it. She had an amazing therapist that kept her going even when it was hard.  She was released from therapy before Christmas because we had reached the limit of therapy the insurance would cover. She has come such a long way since this summer and we are so proud of her.  The extreme pain she was experiencing from the tumors by her heart and lung is pretty much gone.  She still has occasional days that she gets some sharp pains but the doctors said that would be a normal thing for her because of the nerves that were involved in the surgery. 

Another challenge Ricki has faced after surgery is the adjustment to her medications.  She was on a great deal before the surgery and they had been trying different things to manage her pain and then after the surgery it has been a challenge to find the right balance for her.

With the surgery we got off our schedule of Botox treatments that seemed to be helping Ricki's migraines.  They seemed to be getting worse with each month and we were finally able to get her in again for a treatment the end of January.  It took almost 3 treatments before we saw the improvements so I anticipate it will take a couple more to get her back on top of the migraines again.

In the meantime we try to manage them at home.  She had a really tough week not only with migraines but pain in her back and legs. We  knew we could at least get a migraine cocktail to break this cycle of migraines.  We normally go into the ER but decided we would try insta-care instead.  Instead of doing it through an IV they give shots.  They gave Ricki 2 of the 3 shots.  They had her leaning up against the bed.  She passed out and I was across the room and the nurse had a needle in her hand so Ricki face planted on the hard floor. We have been through a lot over the years but it doesn't make it any easier seeing your daughter fall then start twitching on the floor with blood running down the side of her face... She is going to be ok.  The migraine isn't so bad but she has a huge goose egg on her eyebrow and will have a good shiner for awhile.   

Some days my heart just aches for my sweet girl.  It is a moms job to take care of their children and help them when they need it.  Unfortunately with this rare disease there are just not a lot of solutions and not a lot of answers.   There are a lot of days that I feel helpless when she asks for some help and I look in her eyes and see the pain and there isn't anything I can do but sit by her. 

But, I always come back to how incredibly blessed we are.  Yes, life stinks sometimes but you have to taste the bitter to know the sweet.  You have to trust that God has a plan.  We have seen his hand in our lives. We have been strengthened and know we will continue to be strengthened.  We continue to have hope that someday there will be solutions and answers to the challenges that come with NF2.

  

Physical Therapy

We continue to be so grateful for the many prayers in Ricki's behalf as she has gone through her recent surgery and recovery. Today we celebrated because starting next week she only has physical therapy once a week! It is painful and challenging for Ricki and not something she has looked forward to. But,she has persevered and each week she is making small improvements. She has a great team working with her and she has even been brave enough to let them do acupuncture in an effort to find some pain relief! 

On the Mend

Ricki continues to be determined in her progress to get back on her feet.  She started Physical Therapy this past week and always amazes me. She works so hard in physical therapy stretching her back and scar areas and building her endurance. She is exhausted the next day but back at it the next. She has had a set back and has come down with a miserable cold this weekend. Even when she is miserable she seems to be able to pull off some smiles and laughs. Of, course having your best buddy watching movies with you on your IPad always helps too! 

HOME!

We were met at the airport by our sweet family. What a joy to be with each of them. Ricki was so excited to have them waiting for her she ditched her wheelchair driver that wanted her to wait until all the passengers were off the plane.  She just couldn't wait that long to see everyone. When we arrived home I don't know who was more excited Ricki or her dogs. Our family next door said they knew we were home because the dogs were making such a fuss. It was fun to see her snuggle up with them and drift off to sleep.  As we wrapped up the day I felt an overwhelming gratitude for the many angels....family, friends and neighbors that have lifted, cheered, loved and strengthened us through some challenging times these past 5 years....There really is no place like home,

Celebrating Ricki's Recovery

It was an amazing day today! It was fun to celebrate with the doctors Ricki's miraculous recovery! I found myself fighting back the tears several times during the appointments. It means so much to have NF2 doctors that care so much.  Dr. Belzburg kept reminding Ricki they were there for her....Dr. Blakeley kept reminding Ricki it was her job to worry about the NF2 stuff...and all Ricki was to worry about was getting better and her normal life stuff. Dr Yang was humble and just shrugged his shoulders and said it wasn't a big deal when we expressed our appreciation. We had a chance to visit our favorite places- the koi fish pond and the statue of Christ, in between Ricki's appointments. Johns Hopkins has been a place of healing for Ricki and we will be forever grateful.

Dr Belzburg NF2 Neurosurgeon 

Dr. Blakeley NF2 Neurologist

Dr. yang Thoracic surgeon

Ricki's Before (bottom) and After MRIs 

One of Ricki's favorite places the koi fish pond

Our favorite place of refuge and peace. 

Feeling Emotional

I am feeling emotional....our son Steven came to be with us a few days and was so sweet with Ricki. I am so blessed with such sweet kids. I know if they could all her siblings would have been here too. When Steven left today I just started crying and have had a hard time to stop. So many emotions in such a short few weeks. I am so humbled by the outpouring of love and support from family and friends. 

Today Ricki had a 2 hour MRI without any anesthesia and with her painful incision was such a trooper! They did let me stand next to the MRI machine to rub her feet..she held so still for the whole time...She just never ceases to amaze me.

Improving each day

Our hearts have been touched recently by the prayers, love, and many acts of service to Ricki. She has been cheered and strengthened just when she needed it most. Each sweet act has blessed her in a different way and given her determination to get through the challenges she faces. 

Each day Ricki is improving. We have been so blessed to have her brother Steven come out for a few days. We love his cheerful spirit and willingness to take us all over Baltimore. One of Ricki's doctors gave us tickets to the aquarium. It was definitely a highlight of the week. We love the dolphins and the archer fish that spit at the crickets on the stick. We tok several breaks but still wore Ricki out. She had several seizures last night so she slept most of today.  I was glad to see her doing better tonight.

Tomorrow she has an MRI then doctor appointments on Wednesday and then hopefully home on Thursday! It has been a miraculous journey and we are so thrilled at how well Ricki is doing. We have felt Gods hand in our lives and know he hears and answers our prayers. 

Pictures of the aquarium

Flowers from Recursion Pharmacuticals! We were watching Miss America when they came and it made her feel like Miss America. :) 

A sweet care package from a friend with a rare disorder that gets what Ricki is going through. 

Friends and family gathered to support Ricki

Reflections from the past week

This was Ricki's first time in an adult unit. All of her other surgeries have been at Primary Children's Hospital. At the children's hospital they treat the patients with a lot of tenderness and  honestly really dote on them and make sure they are not only physically but emotionally well. Here on an adult unit at Johns Hopkims it was a very formal environment. Everyone addressed Ricki as "Miss Jensen". They would rarely just chat and visit it was all business. After several days Ricki had a melt down and I discovered it was really bothering her to be in such a formal environment. So we brainstormed and csme up with some ideas. She put up a sign on her door that said "Please call me Ricki" and we decorated her door to help people feel hopefully more relaxed coming into her room. It worked like a charm and before we knew it the nurses and techs were smiling and being more friendly and less businesslike. We did speak with them and they are trained to be businesslike because it is an adult 

Another issue we found is that there was just not much to do to give Ricki distractions from her pain. We are grateful we new in advance we were going to be on the adult side so we had our own coloring books, some crafts and books to read. Before the surgery we ask the nurses where some calmomg places were and she suggested the choi fish pond and the Christus statue in the old hospital building. Ricki found those places to be very therapeutic.mshe was very disappointed to discover after the surgery she wasn't allowed to visit those places for quite a few days after surgery and it is definitely something she looked forward to. 

Over all it has been a sweet experience and our hearts are full of gratitude for all the love and support that have made this miracle for Ricki possible, 

Miracles

Today we have had a chance to relax. Ricki had fun ringing the "Good News" bell at the Ronald McDonald House. All the staff came out and celebrated with her that she was out of the hospital.

 Kindness knows no boundaries. One of our concerns for coming to Baltimore  was being so far away from family and friends, we know Heaven hears our hearts and knows our worries. We have felt so much love and support from the medical staff from others here at the house and even from random people we didn't know. 

Ricki had a tough day as far as getting up and around. When she walks much she gets sharp pains in her chest and gets light headed so she has spent most of her day relaxing. Each day I am sure wil be a better day. 

Out of the Hospital!

Ricki slept all day yesterday and by evening she was doing much better. I took her in the wheelchair to the pond to feed the choi fish and it was a relaxing evening. Even after sleeping all day - she slept all night.  This morning her vitals were the best they have been since we came. Ricki even made it through the night without any IV medicine. When the doctors came for the morning rounds they gave us the ok to be discharged from the hospital.it will be so nice to be out of the hospital and It is comforting we will have a home nurse to give us support in the coming week until we are given the clearance to go home.

While waiting for the shuttle bus to take us to the Ronald McDonald House Ricki was struggling. She was in pain and feeling week and just wanted to go home to her dogs and her own bed. We have never experienced getting discharged and not going home. The excitement wasn't the same. I tried to cheer her up but wasn't having much luck. We got up to leave and there had been a beautiful woman sitting by us that had kind of kept to herself. She stood up and handed Ricki a card. She told her it looked like she was having a rough day. Inside was a sweet note reminding her that God loved her and a scripture from the bible. It also contained a gift card. It brought tears to my eyes. I am so humbled by the little tender mercies that have lifted Ricki's spirits just when she needed it.