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. 

A long night = Sleepy Day

Each day we are down a couple more IVs and pumps and this morning she is down to one IV in her arm! That is exciting but unfortunately that has come with with more pain. Ricki had a good morning Sunday but Sunday evening became crazy. Ricki was began twitching so we assumed it was from all the changes in meds she has made over the last couple of days. Soon she said she wasn't feeling well and wanted to move from the chair to the couch. Her legs went out on her then she began having a seizure.   It has been probably a year and a half since she has had any large seizues like this. Rick and I determined it was a non-epileptic seizure but thought  the nurse should be aware what was going on. It got kind of crazy because little did we know they had standard seizure protocols they had to follow. Ricki became non-responsive and we ended up with the light flashing and beeping outside Ricki's hospital room.  All the nurses surrounded and gathered to help. Needless to say it was kind of crazy. When Ricki woke up they were all gathered around her and that was pretty traumatizing in itself.  We were hoping for a calm night. Ricki was having a hard time to sleep and wanted a cup of ice water. I didn't see a nurse close by to ask and  we thought it might be nice just to walk down the hall for a glass of water. Sadly by the time we got to the ice water machine she was not feeling well so she sat down.  Then she could feel it coming on again and told me she needed to go down on the floor. Because she had been seen by all the doctors and they had been educated about Ricki's seizures they were more calm but they ended up wheeling Ricki's bed down the hall to her and taking her back to her room. She still could not sleep so I helped get her distracted with a drawing project. It was 3:30 a.m. And we knew X-ray would be coming soon at 4:00 so what is the point of going to sleep. The X-Ray came around 4:30 and the IV team came around 5 to put in a new IV because it got pulled out when she was having her seizure.  We got a litle sleep on but then the doctors start their rounds around 6:00-6:30. (Which is 4:00-a..m. Utah time) We had neuro surgery team, then the pain team, the neurology team and thoracic teams all come by.  Fortunately most of them just let her sleep.  She did get up have breakfast and try to go for a walk but she was not feeling well so we came back and she has been sleeping for several hours now.  It is hard to see her like this because she was doing so good. Hopefully this sleep is what he body needs and she will be able to bounce back to where she was. 

Ricki's full IV pole compared to today's  empty IV medicine pole 

No Pain No Gain

Saturday Ricki was excited to lose a couple more lines that were connected to her. Her medication pole that has become her constant companion is getting lighter and less awkward to pull around. The pain has increased and she has become more on edge.  However, her nurses have been very attentive in trying to keep her as comfortable as possible. Her heart still races when she gets up and moving but overall she continues to make great progress every day.she did 4 walking laps around the thoracic unit today.  Even though she is in more pain she is gaining more momentum for a full recovery. 

Day to Celebrate

We are celebrating today! Ricki keeps amazing us all. Today she went for a short walk out of her room. While we were gone to get some lunch Dr Yang's team came to remove her chest drain. She followed Dr Belzburgs advice and they gave her all the extra meds they could and had it removed before we got back. When we walked into the room she was all smiles! This has been amazing to see her healing so quickly. I think she has been living with the pain from these tumors for such a long time having them out is a huge relief. We continue to be humbled by the many prayers in her behalf and know God is listening. We are looking forward to more good days ahead.