A Trip Of A Lifetime

Warning*** The next couple of posts will be long and contain lots of details about our trip.  We are not offended if you care to pass.  This blog also serves as a family scrapbook of our life and I want to remember every detail of this amazing trip.


I want to start off by thanking Make A Wish,  The Meiters, Our wonderful fish extender group,  Gail and Don Sayman, and so many others who made this trip incredible and possible.  Our trip started bright and early Saturday morning with a limo ride to LAX. We were so fortunate to have our close friends the Meiters join us on this trip.  There daughter Rachel is the same age as Noah and they have been great friends since birth.  After a stop in Tennesee we landed in Orlando in the early evening.  Jason's back had been bothering him the week leading up to the trip.  He had gone to the doctor and even went for a massage the night before the trip.  The long airplane ride did not help and the pain was increasing.  After we checked into our hotel we went to get dinner.  During dinner Jason felt as though his food was getting stuck and he was very nervous.  I suggested we go have him looked at before we got on the boat and things got worse.  We were able to leave the kids with the Meiters and catch a cab to the nearest hospital.  After a few hours and tests they suspected that Jason had Pneumonia. It was a little strange because Jason had not been sick, had a fever or anything.  They gave him some shots for the pain, antibiotics, and pain meds.  He slowly started feeling better and by day two the pain had gone away.  He has since had another chest xray after being home and all is clear.  we certainly like to keep things exciting thats for sure :).




After that exciting night we went to sleep so we could board the boat the next day.  I can not say enough how efficient and great Disney is.  Everything seemed to always go so smoothly and was top class. They picked up our luggage for us at the hotel  and we jumped on a luxury bus and headed to Port Canaveral.  We were all amazed upon arrival at how enormous the Disney Dream boat was.  It was a beauty.  The kids were so excited and of coarse Noah was already starting to make his list of everything he wanted to do.  For those of you that know Noah, he is a planner and loves to plan his days out and needs to know what's happening every minute of the day and has a hard time with change. Lucky for him they give you a navigator each day that tells you the ships activities and times.  We worked hard and made sure we were able to scratch everything off his list :)

The first thing we did was check out our stateroom.  Wow!! It was super nice and can I just tell you that the beds and pillows were so comfortable.  Real classy Disney way to go.  They had pull out beds and an amazing six foot porthole with a cushion seat that I may or may not have laid and eaten breakfast on while basking in the sun.  Next up was a meet and greet with new friends.  Before the cruise we had joined a fish extender group.  What is that you say??  well outside your stateroom you have these hooks for people to leave you notes etc.  Somebody along the way thought it would be fun to make hangers with pockets and form groups to leave surprises for one another.  We decided to partake in the fun.  The few weeks leading up to our trip we had gotten to know the people in our group through a facebook page.  I told you this was gonna be long :).  I had shared our website and told everyone about make a wish.  A sweet girl named Jodi offered to make our fish hanger, and another gal named Amy Jo offered to take our family pictures.  These people were so kind and we were excited to meet up with them on the boat.  Through out our trip we received gift after gift in our hangers it was so much fun.

After our meet and greet it was time for the Drill and Bon Voyage party.  Our family had fun taking pictures and roaming around the boat taking it all in.  Next was dinner.  Each night you ate dinner in a different themed room.  The first night we ate in the Enchanted gardens.  It was a spectacular decorated room that would change colors and scenes.  We had terrific waiting staff that would follow us each evening to the different rooms so we always had the same staff.  The first night we saw a Disney production and after that the kids got to explore the kids club. As I laid in bed that night I was still in awe that we were really away and that we had been blessed with this incredible opportunity.  I'm so thankful that Noah was healthy enough to enjoy it and thankful for the beautiful memories we have to carry us through.

Day 2  was a packed day of fun.  The kids rode the aqua duct water slide.  A tube slide that goes across the entire boat.  They swam, ate, did a detective activity, ate,  then ate some more and enjoyed the kids club. We ate a ton.  I enjoyed a nice massage, the jacuzzi and lots of yummy food.  Every time we returned to our stateroom we were left with baskets of treats from our on board Make A Wish Host.  We were also gifted with surprises like certificates for the arcade and snorkel rental and water equipment gift cards for off the boat.  Coming back to the room was so much fun because we never knew what we would find in our fish hook or in our room.

Day 3
My Favorite Day.  We docked in Nassau and our family headed out early for our dolphin excursion.  To say I was excited was an under statement.  It has been a dream of mine to pet a dolphin.  This experience did not disapoint.  I can not tell you enough how cool it was.  We got to hug the dolphin, kiss him, dance with it, touch it's teeth,  feed it, and rub its belly.  It was so great.  They are some of the most beautiful sea life.  After our experience with the dolphins we played on the beach before heading back to the boat.  The water was gorgeous and the weather was perfect.  That night we enjoyed an elegant dinner at a french restaurant onboard.  It was a special treat from Jeff and Belinda.  The four of us enjoyed our time and the food was out of this world.

More to come later.  

Please remember to keep Noah in your prayers for his appointment tomorrow with the transplant team.

Make A Wish

 Last night Make A Wish along with Chik Fil- A La Habra threw an incredible wish reveal party.  Noah was completely overwhelmed and had no idea what was going on and why his close friends and family were yelling Surprise!!  Six months ago Make A Wish came to our home to interview Noah and find out what his wish was.  Noah had a hard time coming up with something but knew he loved going on vacations with his family.  After some narrowing down and some time to think it over they helped him come up with a few options.  Noah was excited thinking of the possibility of his wish coming true  sometime after his Transplant.  Little did we all know that this would become a reality before

Transplant.  I received a call just two weeks ago from Make A Wish saying that they have received approval from our doctors and were ready to book Noah's trip.  WOW!! I was excited but reluctant because I needed to talk to the doctors myself to find out if this was really a good idea.  Our doctors were so excited for Noah.  They recommended we go now while Noah could eat whatever he wanted, not have to lug a ton of medication around, and we wouldn't have to worry about signs of rejection.  What about getting the Call?  His doctors said we will take him off the list while you are away and he wont lose any time he will go back on when we return to the same position.  They encouraged us to take lots of pictures and make lots of memories.  WOW!!!  So we are listening to our doctors and leaving this Saturday. Yes you read that right this Saturday!!  Last night Make A Wish revealed to Noah that they are sending our family on a Disney Cruise to the Bahamas.  I loved seeing my sweet boys face when he found out we could go away before his transplant.  To say we are grateful is such an under statement.  We do not feel deserving of these blessings and it has been overwhelming to see how many people made this party and trip possible.  We just can't thank you all enough.  What a gift that we will remember forever.






Please pray that we would be able to relax, pray for good health for Noah, and that we would use this blessing for God's glory.

Pacemaker Surgery

I wanted to give you all an update on what's going on with my (Melody) heart.  Last week I saw a new Cardiac Electrophysiologist(heart doctor that studies the electrical part of your heart).  Dr. Chang highly recommended I see him, and even though this doctor is in San Diego I of coarse listened.  The doctors name is Dr. Perry and I have to say that he exceeded our expectations.  When Dr. Perry walked in we could tell that he had taken the time to study my file.  He had notes all over the file and told us that he had a long conversation with Dr. Chang.  He was very personable and I felt comfortable right away.  He seemed to care about everything that was going on with my body and not just the heart.     He checked my pacemaker and battery and we decided together that we would do the pacemaker surgery in December.  It needs to be done within the next six months and will be nice to get one thing scratched off our many medical future procedures.  I will have this done on December 3 in San Diego.  I will hopefully be able to come home the same day.  Since I'm fully dependent on my pacemaker it is a bit more tricky as they have to hook up a temporary pacemaker while they do the switch out.

Dr. Perry also discussed with us that in the future I will need to have a more invasive risky procedure done.  They will have to do a two lead extraction.  There are not too many doctors that do this.  He is not one of them but he will recommend someone who is very skilled in this procedure.  It is important to do it because right now I have four lead wires in me. Two that are non functioning and they need to bring in another functioning lead.  I know it's all very confusing. Basically I have too many wires Ha! :)

 I'm thankful for all of this technology and for great doctors who take the time to really care for their patients well.  Please continue to lift us all up in your prayers as we navigate through all these medical issues.  We are so thankful for all of you.

A Memorable Weekend

Our Favorite doctor and friend invited us to a big medical conference he was putting on.  The conference was called Pediatric 2040.  It included world renowned doctors from all over the world.  They spoke on future medical innovations.  Our doctor invited us to come and speak at a portion on Saturday morning so we were privileged to be able to stay at the hotel on Friday night.  Our kids were beyond excited.  Another friend blessed us with five tickets to Disney Land.  The blessings continued through out the weekend in ways that brought us to tears.  We truly saw God's finger prints everywhere.  When we arrived Friday we checked in to the conference and were treated like royalty.  We were introduced to several doctors from all over the world including a Neurologist.  I asked him if he saw adults.  He listened to our story, taking notes on his ipad and looking up several different things to share with us.  It was a great opportunity to pick his brain as well as several others.  Not very often that you get to be in a room and pick the brain of several doctors.  Might not sound exciting to most but with a family full of medical issues this was like gold to us.  That Neurologist later told us that he will be discussing some ideas with Dr. Chang about my case :).  The kids got to meet the creators of the IROBOT.  It is a medical robot that will allow the doctors to treat end stage patients who are unable to get to the hospital.  The boys got to work the robot and when the nice lady told me it was a 200,000 dollar machine I about fainted. Ha!! I said ok I think we need to give it back to the nice man now.   The night went on with us having a private dinner with a select few.

 The next morning we went on stage

to address the crowed.  Everyone was so kind and it was an incredible opportunity to be apart of it all.  The conference ended that morning and our family was gifted with a hotel suite for another night at the Grand California.

 Our family went on to enjoy Disneyland.  You will not believe the next blessing we encountered.  While waiting in line for a ride, a man behind us handed Jason a $100 bill and said "sir i think you dropped this".  After Jason saying it wasn't his a few times, the wife said "no he wants to give this to you".  We were so taken back by this gift.  This couple had no idea about our family's story.  I gave the man a bracelette and told him our story and that we would put it in Noah's fund.  The couple was so sweet and said they were impressed by the joy on our faces and said that we had blessed them more.

It was such a wonderful weekend away. The last few weeks leading up to this weekend have been hard.  It has been hard to accept my new leg braces and see my strength decreasing, it has been hard to wait for Noah's heart, and it has been hard seeing our close friends battle cancer.  It would have been so easy for us to wallow in the hardness of it all. It's really easy to stay there.  We could have and we would have missed out on how God was at work.  The Lord is always so faithful to pour his blessings out.  I'm so thankful that he allows my eyes to be wide open to the ways he is working through all of this.  It would be so easy to get caught up in the gifts and not give him the credit for it.  Only God could have made this weekend happen for us.

Thank you to all who made this weekend so special for us all.  Our cups are full and we our counting our blessings once more.

365 Days

It's officially been a year that Noah has been waiting for a new healthy heart.  To be honest we never imagined we would still be waiting.  Our life has essentially been put on hold as we wait close by for a miracle to happen.

The waiting can be unbearable at times.  It's a lot of time to sit and ponder what exactly has to unfold in order for our son to sustain life.  The only thing that get us through, is knowing that God does his best work in the waiting.

Waiting is hard.  It requires patient endurance, faith, strength, steadfast hope, and willing obedience.  I fall short of most of these on a daily basis.  I'm thankful for how the Lord has protected Noah this far and really have no reason to doubt his plan.

Jason and I marvel at the ways God is using this story.  In the last month I have had two separate strangers come to our house to purchase  shirts and bracelets.  They have either seen the news story or seen someone wearing a shirt and have a desire to support our family.

God is at work here in ways that we may never even know about.  This is what helps us get through the wait.  This is what helps us get up in the morning and go about our day.  We hope and pray that a heart would come soon.  Until then pray that we would persevere and wait with confidence knowing that God is doing his best work in the waiting.



Noah had an appointment yesterday and everything looks the same.  Nothing to be concerned about.  We are always grateful for uneventful appointments.

UCLA Update

I wanted to update you all on Noah's last doctors appointment.  On Tuesday we made the trip out to UCLA for lab draws and a visit to the Transplant Clinic. Noah has to have his blood drawn every month to make sure there are no signs of liver damage.  One of the medications he has to take can be hard on the liver.  After labs we met with the transplant team.  Noah has gained some weight and has grown some.  We are all happy about this..  His EKG  did not show any change from his last visit.  We will discuss this with Dr. Chang when we see him on the 18th.  They would like to see Noah every six weeks.  We were told that they got a call for a heart for Noah but felt like it was not perfect enough so they passed it up.  This brought me a lot of comfort to know that they want to make sure it is perfect.  It is hard to wait but we want it to be the best so we have the best possible outcome for him.  We saw the transplant dentist and he needs to have a baby tooth pulled and they would like him to get he flu shot. Noah broke down as he was talking to the social worker.  She was talking about him not being able to go to petting zoo's and handle animals.   I explained to him that he could be around animals just not touch them because his body would be immuno compromised.  He said it is just so much change.  He misses his old teacher Mrs. Barneson and some of his friends that are not in his co-op this year.  He is sad for the things he won't be able to do.  It was good for him to get a lot of this out but it broke my heart at the same time. I wish I could take away his sadness.  Please pray for him.  All in all it was good to see the team and they are all hoping just as we are that transplant will be soon.

This same morning I woke up with some pain in my left hip. I occasionally will get this pain in the evening after I have done too much walking.  When we got to UCLA it was difficult for me to walk and I had a bad fall smack on the tile floor.  I was in lots of pain and could not stand steady.  The next day we had it x-rayed.  Praise the Lord nothing was fractured but it was very inflamed.  I have been given pain meds and told to stay off of it until I follow up next week.  Never a dull moment around here.  We do our best to keep it exciting.  I feel like a dope.  I have been very stubborn in not wanting to get AFO feet braces.  They have recommended them for over a year and a half and I just felt like since I only fall every once in a while I could get away with it. I know stubborn right?   If my son can take 10-15 medications, go through a heart transplant and have to endure a mountain of change.  I can certainly handle this.

Noah's doctors are also setting up all the necessary paperwork for us to go through full genome sequencing.  This is basically a blood test that will give them a full gene panel.  They will be able to see what gene mutations Noah and I have and help pinpoint what genetic mutation is causing both of our diseases.  I'm very relieved to get this done.  My hope is it will give us  some helpful information.

 Please pray that we would be able to get this done soon and that we would get some answers. Please continue to pray that we would walk through these hard things joyfully knowing that God uses these difficulties so that the works of God can be displayed. Pray for Noah that we can help him process this well.  We appreciate all of you so much.

Some Answers To Your Questions

I have been up to my eye balls these days planning school for all three of my blessings.  It's been quite the feat.  I will have one going into fifth, one going into second, and one doing a slow start Kinder.  It will be a fun but challenging year.  I realized last night that we could possibly go through three surgeries in the midst of this crazy school year.  A little bit of panic set in and then today the Lord reminded me that he has never left me.  He has safe guarded Noah's heart this far and I can trust in his perfect timing.  I have a choice.  I can stay in my worry state which the Lord says in Luke 12:25  will not add any hours to my life or I can choose to trust in his perfect plan.  I'm gonna choose to trust and not worry.  I have to keep reminding myself that it's not about my way and the way I think things should go.  The Lord has this all worked out and if I get caught up in worry I will get distracted and miss what great things God does along the way.

How long has Noah been waiting for a heart?

On Monday it will be 11 months that Noah has been waiting for his perfect healthy heart.

 Many of you have asked us if he is number one on the list.

We really have no idea of knowing this.  Things change all the time and people are constantly being added to the list and moving around depending on there condition.  What we do know is that since January Noah has been in the top five for several hearts that became available. In may he was the number two candidate for a specific heart meaning that if the number one was unable to accept the heart it would have gone to Noah.  It has been difficult at times to wait knowing that our sons current heart is sick and can give out at any moment.  However we know that things could be so much worse, we know that there are harder days ahead and we are thankful for this time we have with him and do not take any moment for granted.

I get the statement "I don't understand why this is happening to you guys, it just is so much".  Here is my response to this. It's really not about us it's about Him.  I think we all go through trials and I believe God uses those trials to bring about his glory.  We all walk through trials it just looks differently for every person.  Through these trials we also if we are able to look up will see God's handiwork and the blessings that abound.  I have been given many blessings in my life from the Lord.  I have a beautiful marriage, beautiful children, wonderful friendships and family, great church family, a home, a job for my husband and the list goes on. I consider myself spoiled.   We truly don't deserve anything but God's wrath and yet he gives us so many blessings. We have never felt angry at God for going through these difficulties.  It is hard don't get me wrong but God brings beauty out of ashes and I know he will through all of this.

"How is Noah doing"?
Physically we have seen Noah's energy decline little by little.  He gets more tired than normal at times but still lives life normally. We had a scare last month when Noah was so tired he did not want to get up from the couch for hours. His last EKG they told us looked worse. They are monitoring him more closely.  His attitude is still the same.  He still is not scared and is ready more than ever to get it over with.  He trusts in the Lord and understands that his heart could give out at any moment.  He is super brave and inspires me all the time.


We have appreciated all of your questions and would love to answer others you may have.  Feel free to add any more you might have in the comment section.

Please continue to pray for our family as we enter this next school year with lots of unknowns.  Pray that we would be content in knowing that our Lord knows and is working all things together for good.  Your support has meant so much to us.  It's been a long road and we are thankful to have you all walking with us.