He is the same yesterday, today, and forever

I'm sitting here so thankful for how our Savior is the same yesterday, today, and forever.  We have had a pretty crazy week.  There were times when I just wanted to throw in the towel and hide in a corner.  It’s amazing when I’m at my weakest points the Lord always gives me the strength I need to press on.  

Sunday instead of going to church, Jason and I spent our morning with Noah in the ER.  The day before he had some strong chest pains and his stomach was distended.  These are all signs they tell us too look for.  They are signs of heart failure so they needed to do a work up to make sure he was ok.  He checked out fine enough to remain at home.  We followed up with Dr. Chang on Wednesday.  He put Noah on a 30 day monitor and added another medication to his already growing repertoire.  Monday landed us in the ER with Jason.  He was having the same symptoms he had when we landed in the ER in Florida a month ago.  The doctors once again took a chest xray and told him he had pneumonia.  What?? Really??? AGAIN!!!! He requested we see a lung specialist to find out the underlying cause to both these episodes so we are scheduled this Thursday.  This was also the first week that our helper was no longer with us.  It was rough but like we always do we pushed through.

 Like the Lord always does he gives me glimpses of his faithfulness and goodness.  I realized how thankful I was that last month Noah was feeling well enough to go on his trip, that he is well enough to not be hospitalized and was able to spend time with Family on Thanksgiving. Thankful for good insurance that allows us to bypass approvals and see which ever doctor we choose.  Thankful to have amazing friends and family who bring meals, run errands, step in, call with sweet words of encouragement, and have understanding when I’m just not my usual self.  I’m thankful that even when I'am tempted to buy into Satans lies that the Lord provides his truth in his word.  

I’m so thankful for answered prayers.  Caden received an incredible gift yesterday.  This sweet little guy was just in ICU a few weeks ago struggling.  They had echmo and an LVAD set up in case he went into heart failure again.  He needed a new heart incredibly bad.  We were so thankful to get the good news Wednesday night that they had a heart for him and by the next day it was in and he was extubated.  It blows my mind how the Lord has brought this family back into our lives through these boys same struggles.  The Lord is using us both to encourage one another as we endure this season.  I will be looking to them for wisdom as they go before us.  I love facebook and technology for this reason.  We had grown up in church with Caden’s parents and reconnected through facebook.  They reached out when Caden was first diagnosed with heart failure.  Never in both of our minds did we ever expect even then that they would both end up waiting for new hearts.  We all will be forever bonded through this.  Even when things seem so hard and dark God brings a light to break through.  He is so present and is the same yesterday, today, and forever.

I realize I will have hard days again but also know God will once again remind me he is present. No amount of pain, struggle, or worry is going to change that.

Monday I leave for San Diego for my Pacemaker Surgery.  I would appreciate your prayers.  We are relieved to be crossing one of our families surgeries out of the way but I also am nervous about being further away from UCLA.  I know God is in control of all those details but still cant fight the nerves :).  Would you also please pray for Jason as he prepares to preach this Sunday.  He has the opportunity to preach at Whittier Friends. Pray that he feels well and that the Lord would use him to speak to the congregations hearts. 

We are so thankful for you all.

Thankful

Our family is so grateful for the wonderful Make-a-wish trip on the Disney Cruise to the Bahamas.  The whole trip seemed to be a first class trip.

  If you have read my wife’s previous updates, it’s clear who the detail person is.  Since she has covered the details, I wanted to share a reflection now that we have been home for a couple of weeks.

 A vacation trip like this one often reminds me how quickly time flies.  All the planning and anticipation can at first make everything seem so far away and then before you know it you’ve already been home for two weeks.  Each day anticipated and each day goes by faster than the previous day.  Personally I can put so much expectations on a trip like this.  That somehow a vacation away will make everything go away, even if just for a time.  All the rest I need to catch up on or stress overload will magically fade away as we board the airplane.  But every vacation comes to an end and soon it’s back to “real life”.  Please don’t get me wrong, my reflection does not come from an ungrateful heart, I am thankful for every moment of our time away, but I believe as God grows our understanding of things that are eternal it increase our heart of graditude for each blessing that God gives us.  We can so often put expectations on people, vacations, hobbies that can only be met in Christ.  Even our expectation of how life should turn out…healthy family, enough money, times of escaping “real life” just to name a few.  Each one of these will eventually fall short if we place eternal qualities on temporal things.  Maybe some of us would not admit that this is the case for us but our thoughts and actions can subtly speak a different story.  How often I find my thoughts fixed on things that will not endure.  Looking forward to a trip or things in our life, is not a bad thing given the right perspective.  Do you remember a time when you were thankful for a Christmas gift you received years ago?  Maybe it was the best gift you had ever received?  The giver was so insightful and knew just what you wanted and then took the time to get it for you.  I can think of my first laptop I received from my parents as I graduated high school.  I was so grateful for that gift but today I rarely think about it.  Actually if someone gave me that same laptop today I would probably give it to one of my kids to play with as it could only access the internet through dial-up and does not have a large enough hard drive to run even the most basic programs.

I can so often not think very deeply about why I am Thankful.  Our heart of Thanksgiving can simply be out of our situation or circumstances.  I can be thankful for my wonderful family who are so supportive, or that I have a job that provides for my family, or for my health.  But as soon as the circumstance changes so can our heart of Thankfulness…unless my thankfulness is rooted in the unchanging character of Christ.  Hebrews 13:8 says “Jesus Christ is the same yesterday, today, and forever.”  You see, I hate heart conditions and muscular diseases, but I am incredibly Thankful that Christ is doing a redemptive work through it.  God has a purpose…a plan in everything and it might not be to restore our earthly bodies to full health.  Actually it’s a guarantee that short of Christ return all of our bodies will fail us…all will face death.  This is why Paul tells us in Colossians 3, “…if you have been raised up with Christ, keep seeking the things above, where Christ is, seated at the right hand of God.  Set your mind on the things above, not on the things that are on earth.  For you have died and your life is hidden with Christ in God.”  People who place their trust in Christ are “hidden” with him…who is “seated at the right hand of God.”  He is eternal, unchanging, creator of the universe who by His sacrifice on the cross redeemed those who place their trust in Him.  Paul’s words are telling us the world around us is changing and uncertain so set your mind on the unchanging, eternal Christ in which all praise, and thanksgiving regardless of our changing circumstances is rooted.

You might be thinking, “wow that’s pretty deep for reflecting on a Disney Cruise.”  But as I now look back on our trip and ahead to Noah’s heart transplant my prayer comes from Colossians 3:17, “Whatever you do in word or deed, do all in the name of the Lord Jesus, giving thanks through Him to God the Father.”  So whether Disney Cruise or heart transplant all thanks, praise and glory to the unchanging God who has a purpose in all things.

MAW Trip Part 2

Hope you all have had fun reading about our trip so far.  Life has been crazy since we have been back and as much as I have wanted to sit down and reflect, I just haven't had the energy.


Day 4

This is the day we docked on Castaway Cay.  Disney's private island.  Jason and I agreed that the boat could have left  us there and we would have been just fine with that.  This island was absolutely breathtaking.  Imagine the most gorgeous crystal clear blue water and white sand beaches.  Perfect weather year round, lots of good food and fun activities.  This is Castaway Cay.  We wished we could have spent more days at this port.  Most of us enjoyed, snorkeling, laying in the sun, playing in the sand and dancing with Goofy.  The kids swam out to this really cool play area in the middle of the ocean.  The play area had water slides and monkey bars and other equipment.  They even had sand wheel chairs that came in handy for this mama.  It was one of our favorite days.  After our time at this amazing island it was time for showers and a special Make A Wish party with Mickey.  We quickly showered and headed over to Cabannas on the boat.  We were greeted by our Make A Wish host.  She gave us some milk and cookies and the kids did some coloring while they waited for Mickey to show up.  Mickey Entered the room and a scream could be heard from across the ship. Yep you guessed it Hannah's not so much a fan of costumed Characters.  Belinda saved the day and took her far away from the action.  the rest of us enjoyed taking pictures, getting autographs, and dancing with Mickey.  The staff were so kind to give us all professional pictures and invite us to this special party.  Noah felt very special as did Jonah.  When we were all through with the party we had a few hours to spare before dinner.  Noah really wanted to play miniature golf on the top deck of the ship.  This was one of Noahs favorites from our trip.  We had a great time as a family and Yes thats right MOM was the big winner of the game.  After the game we received a special call from the Cruise director informing us that with the help of Gail and Don Sayman They wanted to treat our family to VIP seats for the Firework show that night.  We had another amazing dinner at the Animators Palate.  A restaurant where Crush interacts  with the crowd and the decor is all animated sketches.  It was one of my favorites.  When dinner was over we quickly changed into pirate attire for the big pirate show and firework spectacular.  I could probably devote a whole post on how amazing the show and fireworks were.  We met the cruise director at the bottom of one of the slides on the ship.  Gail and Don were there to greet us as well and explained that they had contacted the director after they read our story.  they felt compelled to do something.  This brought me to tears and Gail as well.  We felt unbelievably special.  Gail and Don are Disney Cruise Experts.  They have cruised 49 times and have been privileged to have these very seats.  They really wanted us to experience the view.  We walked up this ladder to the very top of the slide and got to stand on this platform to enjoy the show.  You felt like you were apart of the show looking down on everyone else.  It was such a cool experience that we will never forget.  Afterwords they have a huge dance party on the deck. Mom's, dads, kids the whole family.  I had so much fun.  I was extremely tired and sore the next day but it was worth every bit of pain.

Day 5
We had to say goodbye to the Disney Cruise.  We packed up and ate breakfast before disembarking the boat.  It was sad to say goodbye, but we took many wonderful memories to last us a lifetime.  We were so thankful to have had such a great experience.  We never checked our cell phones, never worried about getting "the call" and just had loads of fun.  A priceless gift.





Today Marks 14 months for Noah being on the list.  We know his time will come and we are so thankful for how well he is doing and for Gods hand of protection over him.  Please continue to pray for our sweet boy.

The Latest

Hi friends.  It is Marla.  Melody asked me to give some updates about yesterday's appointment with the heart transplant team at UCLA.

There were a few surprises as they met the with the transplant team yesterday.  First, they found out that Noah was not taken off the list while they were away on their Make a Wish trip, but rather he was put on hold.  They were told this would help him to accrue more time on the list and increase his chances of getting a heart sooner.  If a call had come for a heart while the family was away (which it did not), they simply would have rejected it.

Concerns arose about Noah's increasing exhaustion while on their trip.  Mel told them that Noah got very tired while in the ocean and started having chest pain.  He ended up spending much of his time on the beach, playing in the sand.  This increasing exhaustion points to further development of his disease.  They did another ECHO, and it showed increased stiffening of his heart.  As restrictive cardiomyopathy advances, the heart grows stiffer and unable to effectively pump blood out to the body.  They also looked for clots in his heart and found none.  However, due to the development of his disease, they will probably start him on aspirin to prevent clots and the problems that they cause (stroke, etc.).  Please pray for Noah - that God would continue to sustain his life and health as he waits.  And please pray that God would provide a new heart for him soon.

Please pray for Jason and Mel, too, as they continue to face the challenges of hearing this kind of news, not knowing how long it will take for his disease to progress, how long it will be until a heart comes, and if something will happen to Noah as they wait for a heart.

While they were at UCLA, they were able to visit Caden - a sweet 8 year old who is also waiting for a heart.  It was great to be able to have the boys spend time together and spend time encouraging their family.  But it was also very surreal for Mel to think that this could be them at any point - waiting for a heart in the hospital.  A sobering reminder of the road that they continue to walk down by the goodness, grace, and sovereignty of God.

They continued on their UCLA rounds and visited Geoff and Leah.  It was a hard but good visit, once again so hard to see their dear friends continue to struggle so deeply.  These friends continue to live each day in the uncomfortable and scary place of not knowing what a day will bring.  Spent time crying and praying and bringing each other to the only One who can offer hope and peace and stability in these times.

As you continue to think about and pray for these dear friends, would you pray with these two passages in mind:

Isaiah 33:2, 5-6
"O LORD, be gracious to us; we wait for you.  Be our arm every morning, our salvation in the time of trouble... The LORD is exalted, for he dwells on high; he will fill Zion with justice and righteousness, and he will be the stability of your times, abundance of salvation, wisdom, and knowledge; the fear of the LORD is Zion's treasure."

Romans 15:13
"May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope."

Our circumstances are not secure, our lives are not sure, and our hopes waver when we rest them on the foundation of our own lives.  Yet we do have a sure foundation, stability among the circumstances of these times.  We have an exalted LORD who dwells on high, who has become our salvation, who is gracious to us as we wait for him, who will execute perfect justice and righteousness.  He has provided an abundance of salvation, and so we can have an abundance of hope.  And this hope is unshakable because its foundation is the power of the Holy Spirit which is for our good because of the finished work of Christ.

May God bring joy and peace and hope as they wait for Him and daily choose to believe that He is good and that all He does is good.

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.