Tuesday, December 30, 2014

Body Scan twins!

Madalyn went into CHOC children's hospital for a bone scan and I went into check to see if any of the cancer had come back.  It was a week of scans for the two of us!  I got good news!  No more cancer cells showing!  Madalyn got bad news....she has osteoporosis.  Unfortunately she is too young and small framed to take the prescription drugs for osteoporosis.  So for now she is using a bone stimulator machine that she wears 30 minutes every day to help strengthen her bone.  The goal is to get her bone to grow around her hardware.  

 Here is her latest X-ray also.  So weird to think those screws are 1 1/2 inches long and they do not puncture her lungs!!


Thursday, December 25, 2014

Christmas Season 2014

 Santa showed up to Meredith's Christmas dance recital!





The kids had too much fun with the lights at the LA Temple!
Trevor sang in the Sing Noel youth choir for the MV Stake


School Christmas choir concert for Meredith's 5th grade class


 Christmas Eve with the Jones and Christmas morning!







 The game of Kendama was very popular this year!

Merry Christmas!

Tuesday, December 2, 2014

5th Grade Science Camp

Meredith was able to go to 5th grade Science Camp the week after Thanksgiving break.  The weather was going to be cold so they were all hoping for snow.  However all they got was lots of rain!  Their bags and clothes were soaked.  They were so wet that the camp actually took the kids clothes to a local laundry mat to dry them (thankfully).  The camp was in Big Bear and Meredith had a great time!



 These were very popular Target special boots that lots of girls wore!

 Meredith with her bus mate and room mate Maggie Rasic

 Welcome Home!  We missed having Meredith around.  It was weird to only have four of us at the dinner table each night.  It gave us a sad realization that this is how it will be for our family in 9 months when both Mackenzie and Madalyn are away at College.



 Meredith and Izzy Searle...another good friend and room mate at camp!


Monday, November 3, 2014

Meredith for VP

Meredith took a test and was selected to run for the Vice President of Ladera Ranch Elementary School.  Unfortunately it was during the time Danielle was in the hospital 24/7 with Madalyn.  Luckily our good neighbors and friends the Grossen's helped her come up with a slogan and poster!  It was super cute!
She gave a great speech in front of all her classmates too!
  This was not her year to win...she had already spent a year as the Activity Director, but she did get to serve on the student council as a class representative.



Wednesday, October 29, 2014

All She wants for Christmas is a new back and dance lessons!

On Wednesday, October 28th Madalyn went to her last Stake Youth Halloween dance.  She took Trevor, it was his first!  She had taken work off for the dance and was excited to hang out with her friends and keep an eye on her little brother!  However the evening quickly turned into an evening she will never forget.  One that will help shape who she is for the rest of her life.  

About an hour into the dance she and her friends were standing in front of the stage in front of a fan trying to cool off.  On the stage were three large black speakers topped on top of each other.  Not sure how, maybe the vibration of the music or someone hit it, but the top 80 pound speaker fell off and hit Madalyn on her neck and back.  The adult leaders there immediately grabbed Madalyn, who never lost consciousness, and took her out of the dance.  Luke Blais and Drew Fenn were there immediately to give her a priesthood blessing.

Drew Fenn then called Ryan and said that Madalyn had been hurt and we needed to come over.  We thought he was just kidding around, but as soon as Ryan spoke with Madalyn on the phone he knew it was more serious.  So we both headed over to the church building (I only came along so I could drive her car home).  When we arrived Madalyn was in pain, but not freaking out.  She stayed very calm.  

Ryan had a feeling he needed to take her the ER.  I and a few other adults thought she would be just fine.  I remember telling Ryan that we should just take her home, give her some pain medication and I would take her to get an X-ray the next day.  Selfishly I was thinking of the $$$ signs as we had just started a new PPO plan and deductible October 1st.  However Ryan followed his gut and took her to the ER while I took Trevor home and stayed with the younger two.  Throughout the night I got 20+ text messages from friends and many updates from Ryan.

 When Ryan arrived at the ER with Madalyn and explained to them that an 80 pound speaker had fallen 10 feet onto her neck and back the charge nurse blew him off and had them sit in the waiting room for two hours.  By this time Madalyn was in so much pain.  So Ryan decided it was time to call our doctor friends to pull some strings.  Thankfully Dr. Doezie contacted the doctor on call and he took Madalyn back and got her an X-ray and CAT scan.  The X-ray was done right away then they were sent back to a room to wait for the CAT Scan.  They were waiting a good hour when Ryan decided that he was done.  He found Madalyn's nurse and asked for discharge papers.  The nurse immediately responded with "you can't leave, your daughter broke her back!" 
 GAME CHANGER!!  
 The Trauma team immediately came in the transferred her to the trauma side.  Stabilized her neck and got a CAT Scan and MRI immediately.  The PICU did not have any patients so they had to call in some nurses to open the PICU just for her.  By the time she got to her room it was 6:00 a.m.   I came down to the hospital and switched places with Ryan.  

Madalyn got nice VIP treatment in the PICU as she was the only patient.  The rooms were nice and spacious.  The nurses were all so great!  They gave her donated blankets and stuffed animals!

On the same floor was a Ronald McDonald area with sleeping rooms for the parents.  I tried sleeping in the room with Madalyn, but I found myself constantly checking the monitors so I spent two nights in the Ronald McDonald room.

 All day Thursday and Friday (Oct. 30th-31th) Madalyn laid in her hospital bed completely immobilized until the surgery could be done.  They kept her out of pain with Dollata (?) and Morphine.  She was brave throughout the entire process!  Never a complaint!
She thought her ET finger was funny!  However, no matter how funny it was, the pulsox kept giving us problems!

Here is a picture of her X-ray.  She had an unstable fracture at T6 and T7 and a compression at T5, T6, T7.

On Halloween a lady came around and handed out goody bags to all the kids to help them feel better!


As we all know Mackenzie is away at her first semester at BYUI.  She was feeling super sad to not be here with her sister.  However there was no way we could afford to fly her home, nor did we want her to miss any classes.  Then one of our friends and a family Mackenzie use to babysit for reached out to me Thursday night and asked in she could use her frequent flier miles to fly Mackenzie home for the weekend.  I couldn't possibly take her up on such a generous offer so I told her to contact Mackenzie and see what her response was.  Once Keri Rydell contacted her Mackenzie immediately texted me "what do I do?"  I told her to do what she felt was necessary...she is 18 after all and old enough to decide for herself!  Mackenzie hopped on a plane the next morning and got to spend a few hours with Madalyn before her surgery and a day and a half after.  It was a quick 48 hour trip, but it brought peace of mind to her to see her sister in person! 
 Madalyn was lucky to have lots of visitors from family and friends.  I only got a picture of a few, but we all appreciated everyones love and support toward Madalyn and our family!


 Madalyn's surgery was scheduled for 7 p.m. Halloween night.  However earlier in the day we were told that the surgery would be pushed back to 9 p.m.  This made us a bit uneasy for the surgeon to be starting so late on a six hour surgery.  However the PICU doctors and nurses all assured us that he is the best and the time would not affect his abilities or judgement! Then suddenly at 6:00 p.m. transport showed up ready to take Madalyn!  It was a complete surprise to everyone including our nurse.  Madalyn's smiles and calm demeanor suddenly became a look of fear.  The surgeon had explained that the recovery would be long and painful so she suddenly was nervous.  Not about the surgery, but about the recovery.  

This is the Neurosugeon, Dr. Chiedozie Nwagwu.  He is AWESOME!  A surgeon with a personality!  He came highly recommended from our doctor friends.  He is very good at what he does and we could not be more confident in his abilities.  
 Ironically the anesthesiologist assigned to Madalyn's surgery was a friend of ours from church, Chris Beaty and her OR nurse was Madalyn's best friend from kindergarten's mother (Jaybelle Naigon).  We found comfort in the familiarity!  The staff could not believe all our medical connections at the hospital.  It sure makes us as parents happy to know that our little girl was in good hands!



 Before surgery Dr. Nwagwu wrote on Madalyn's chest what he was planning on doing.  
He fused T4-T8 with two rods, 8 screws and one cross bar.  He also removed a hematoma found behind T6. Lastly he reduced her Kyphotic deformity.  He used low profile titanium hardware because she is so thin to avoid the screws sticking up through the skin.  One thing he did note is that Madalyn has osteoporosis and so we are going to monitor that with diet right now and then when she heals we will have a Dexa scan done to test her bone density.  

A fun/precious moment we had with Madalyn was just before she went into surgery (after she got a dose of Versed in her IV).  I asked if she could tell if the versed was working...if she was feeling really good.  She opened her eyes, gave us a huge grin and gave the best giggle!  It was definitely working!! haha!!

As they wheeled Madalyn into surgery we felt peace that everything would go well.  Ryan and I went and ate at the cafeteria then went home and visited with our good friends Blaine and Tamra.  Around 12:30 p.m. we headed back to the hospital to await for the surgery to be over.  Around 2:00 a.m. Dr. Nwagwu gave us the report we wanted to hear...the surgery was a success! She would be down for 4-6 weeks with a body brace.  After her back heals she will begin physical therapy.


Only seven hours after surgery our friend, Chad Marquis, showed up in our hospital room to measure Madalyn for her custom fit brace.  He had come the day before to explain the brace to Madalyn which is a good thing because she was pretty out of it when he came back to measure.  She had a PAC so that kept her very comfortable!


This sweet brother of hers did a full 24 hour fast before Madalyn's surgery.  That is a huge feat for a 12 year old boy on Halloween!  We did not ask him to do it, he decided for himself.  The Sunday before Shari Conover spoke in Sacrament meeting about fasting and mentioned that a full fast is 24 hours.  He usually fasts two meals.  At the time he mentioned that 24 hours was so long!  Little did we know the impact her talk would have on him.  He took her teachings to heart and did a full 24 hour fast.  A few days later we asked him how it was and he said it was easy.  Explaining that when you have a purpose to your fast and a prayer in your heart Heavenly Father will help you past those moments of hunger.  

Sweet Meredith wanted to hang out in the hospital room as much as we would let her!  She just wanted to help take care of Madalyn!  It was really tender!


President Chamberlain came to visit us and offered a beautiful prayer.  It was a great moment to have the entire family gathered at Madalyn's bedside and say a prayer.  The Lord is mindful of all of us and he knows each of us by name.  We were reminded of that during this tender moment. 


Eating was not a top priority to Madalyn after the surgery.  We would basically force her to take 2-3 bites of her food so I had to document her taking one bite!


Madalyn with her custom made corset..oops I mead brace!  


A friend, Amy Wattles, made this adorable burlap and glitter banner to decorate the room.  #prayersformaddy was the hashtag I put on all of the Instagram and Facebook updates.
We all love it!!


A day and a half after surgery the physical and occupational therapist came in to teach Madalyn how to (with assistance) sit up from a laying down position and walking a few steps.  Madalyn did AWESOME!  She got right up and she proved to everyone that she is obedient to the nurses and that she can do hard things! She is now a log rolling master! haha!!


This was her second time sitting in a chair...didn't love it, but she did like looking around and seeing the room.  


So here is the battle mark!  Her mark of bravery, courage and endurance.  Nothing is going to stop this girl from doing great things in the future...not even a 18-20" scar and new hardware!  




There is a lady who comes around who does acupuncture and massage if we are interested.  She works at the hospital on a grant so it is free for patients (its the only thing free).  We welcomed her in with open arms!  Madalyn loved her three sessions.  She said they were very relaxing.  


The second time Madalyn attempted to walk she walked outside of her room.  What a touching moment when all the PICU nurses stopped what they were doing to clap for her.  It brought a tear to my eye to see the love and support for her!  


Here she is with the physical therapist walking down the hall to practice walking the stairs (she had to master that before she could go home).  Again she passed with ease!


After seven days in the hospital Madalyn got to come home!  We were excited to have her home, but a little nervous if she would be comfortable.  Thankfully Jim (Grandpa) brought down his electric recliner.  Madalyn was able to either lay flat on our couch or sit reclined in the chair that moved for her!  It is different getting us to our new temporary normal.  It's like having a baby that cannot go anywhere.  Madalyn has kept a positive attitude the entire time so she makes it a lot easier! 


There are two things that Madalyn has complained about through this entire process.  One is the calcium chews and the other is the Spirometry.  


Madalyn is stuck at home for at least 4 weeks and is also unable to go to church.  
She is not allowed to sit for longer that 30 minutes and can not twist, bend or lift.  
Her leaders and Laurel class come every Sunday to our home for their lesson so Madalyn can participate.  Two priest come each Sunday and bless the sacrament in our home so she can partake of the Sacrament.  We love our church friends!