Overwhelmed

Hi friends.  It is Marla, updating on behalf of Mel and the Lietzau family.

Please pray for our friends!  It has been an overwhelming year, and the effects continue to compound, bringing weariness and continued difficulty in these last few weeks.

Details...

Mel's surgery to replace her pacemaker went well.  She and Noah spent two nights in San Diego, and the process went smoothly with overall very few complications.  The timing of the surgery ended up being very difficult as Noah's friend Caden ended up having life-threatening complications of his heart transplant the day before Mel's surgery.  It was difficult to not be present with him and his family through all that was going on, but God was good in reminding her of His presence and sufficiency - both with Caden's family and with her.  Since then, Mel has been trying to rest and let her body recover as she continues to face the daily tasks of life and getting from the morning to the night.  Please pray for Mel - that God would give her perseverance during this time, both with the many needs of her family and friends and with her own health as well.  Pray that God would strengthen her with peace and joy in knowing Him and knowing that He is truly working all things together for her good even when all physical circumstances look grim.

Noah continues to wait for a new heart.  His physical symptoms are becoming more frequent which is being brought out even further with this last month of wearing a Holter monitor.  He has to call in every time he has had three "episodes" - whether it be chest pain, dizziness, or other symptoms - and have them assess the data that is sent.  This has become wearying, as they need to stay close to a land line and end up calling multiple times a day.  Pray for Noah - that he would continue to seek God through this time of waiting.  Pray that as he wrestles with the newly understood realities of the risks of heart transplant (Caden's situation has brought up a lot for him) that he would continue to find comfort in his eternal hope of being with Jesus forever and not having to fear sickness and death anymore.  Pray that he would continue to be open with his parents with the things that he is thinking and feeling and that God would truly give him peace as he waits.

Jason has had a few appointments recently regarding his pneumonia which was first diagnosed the day before they left on the Make a Wish cruise.  It came back a few weeks after their return from the trip, and he was referred to a pulmonologist (lung doctor) shortly after.  The pulmonologist didn't think it was pneumonia but rather some sort of bronchial thing.  He prescribed a steroid for Jason to take, and told him to come back for a follow up appointment in several weeks.  Well, his symptoms are back (for the third time), and we went back to the doctor yesterday.  His oxygen was a little bit low, and they scheduled him to get some more tests done on Friday (a CT scan, more Xrays, blood draws).  With all that is going on already in the family, this has become a source of stress and anxiety for Jason.  Please pray for him - that God would provide answers through this appointment on Friday, that God would heal and strengthen Jason's body, and that Jason would seek and find deep and unchanging rest in Christ and his sufficiency.

It has been a specifically overwhelming season in the midst of a long and difficult season, and the Lietzaus would deeply appreciate your prayers and encouragement during this time.  Thank you for your continued support for these friends as they continue to seek to know God and make Him known in the midst of suffering.  "And God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work." (2 Cor 9:8)  God is able!!

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.

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.

Word Of God Speak

Today Noah had an appointment with Dr.Chang and Dr. Alejos at CHOC.  I was expecting it to be an uneventful appointment.  They did the normal ekg and echo.  The doctors then came in to give us the report.  They said that the echo looked the same but the ekg looked worse.  They want to monitor him more closely. We will go back in two months.  However if he has any nausea, chest pain, dizziness, or passing out we are to go straight to the ER.  Not comforting words for a momma to hear.  Basically we are to be more concerned and aware of him possibly going into cardiac arrest.  We know this is common and has already been a huge fear of mine. We are just hoping it does not come to this. We are so eager for Noah to get his heart.  It tears me up inside to know that he is in this situation.  Times like these I draw such comfort listening to praise and worship music.  Below are lyrics to a song that brought some comfort today.  I hope it does for you as well.


Word Of God Speak

I'm finding myself at a loss for wordsAnd the funny thing is it's okayThe last thing I need is to be heardBut to hear what You would say
Word of God speakWould You pour down like rainWashing my eyes to seeYour majesty
To be still and knowThat You're in this placePlease let me stay and restIn Your holinessWord of God speak
I'm finding myself in the midst of YouBeyond the music, beyond the noiseAll that I need is to be with YouAnd in the quiet hear Your voice
Word of God speakWould You pour down like rain[ From: http://www.metrolyrics.com/word-of-god-speak-lyrics-mercy-me.html ]Washing my eyes to seeYour majesty
To be still and knowThat You're in this placePlease let me stay and restIn Your holinessWord of God speak
Word of God speakWould You pour down like rainWashing my eyes to seeYour majesty
To be still and knowThat You're in this placePlease let me stay and restIn Your holinessWord of God speak
I'm finding myself at a loss for wordsAnd the funny thing is it's okay

Read more: MERCY ME - WORD OF GOD SPEAK LYRICS 

Jesus Controls Our Final Breath

Yesterday I celebrated my 36th birthday.  I know what a gift from the Lord that is more than ever.  My father who I never really got the privilege of meeting died at the age of 34.  My son although he looks healthy is dying from his heart disease,  our dear grandfather died last November,  and our precious daughter almost did not make it three and a half years ago.

 Life is precious and it certainly is a gift from the Lord.  Only the Lord controls our final breath.  I have thought about that more in the last year than ever before.  I admit I sometimes get overwhelmed with fear and will have some hard days not being able to shake that at any moment my son could go into heart failure with the possibility of not making it.    We thought by now he would have his new heart and be playing soccer this fall.  He wants more than anything to play soccer.  The days continue to go by and the worry intensifies for me.  I hate that I worry because I really do trust completely that God knows better than I.   One particular morning after a bad dream I had, I needed to hold Noah in my arms.  My sweet son comforted me by saying, "Mom you know that whatever happens to me it will be ok."  I was so thankful for those words of comfort.  So thankful that the Lord has given him such  peace as he walks this hard road.

When we first heard the news of Noah needing a new heart.  I couldn't breathe.  It felt as though someone knocked the wind out of me.  I remember a mentor asking me what I feared the most.  Of coarse loosing him I said.  He then asked would that really be the worst thing if you were confident he was in the arms of his savior.  No but selfishly I want him in my arms for longer.  I understood what he was saying and have carried it with me. My mentor continued on by saying" When we lose a loved one we grieve the loss we feel of not having them with us.  We should feel excitement and jealousy knowing they are in a place where there is no more pain and sorrow and only goodness beyond anything we could imagine or be able to give them ourselves." Such good and honest words to hear.  

I'm so thankful to have those that will speak truth in our lives.  Often people will say I know it's all gonna work out and Noah is gonna make it.  I know people mean well and they want to believe that but it's just not the truth.  We don't know that it will all be ok and work out, but we do know that we can get through it if we have Jesus.   This is the Hope we have.  The HOPE in Jesus.  Nothing else can help us get through a situation like this.  Nothing else can take away my worry, pain, and grief.  He has been faithful to show his love and grace over and over and over again. 

 If you want to know Joy like no other Know Jesus.  Don't know how ask me and I will tell you.

9 Months

It has been nine long months since we were listed for a new heart.  For the past nine months we have gone to bed wondering if "tonight" would be the night.  We have woken up wondering will "today" be the day.  Not one day has gone by that we not think about it.  When we were first listed the Doctor told us it would probably take 6-9 months for the call.  He also said to expect anytime because he had patients where they did not even make it home from a clinic visit before they got the call.  To be honest we did not expect to be  waiting this long.  We are hopeful that God has the perfect heart for Noah.  We are also thankful for a good report after Noah's cath procedure.

Monday morning Noah went in for a heart cath procedure.  This is the test he had a year ago that told the doctors he had RCM.  The heart cath measures the pressures in your heart.  It had been a year and the doctors wanted to see how much the disease had progressed.  We were told the normal range was 8-12.  Last year Noah was at a 15.  This is high but not dangerously high.  This year Noah's pressures were at 16.  Still high but not dangerous.  With RCM these numbers can drastically change at any time. Every person responds differently and it is very hard for them to know when and how fast the numbers will jump up.  His lung pressures were in normal range.  This is a huge answer to prayer.  Noah is on medication to help his lung pressures stay in normal range.  People with RCM can develope high pressures in the lungs causing them to need a double heart and lung transplant.  So thankful for this good news.  Noah did great before and after the procedure.  He is such a brave little guy and he knows what needs to be done and just goes with it.  A nurse commented on what a well behaved sweet boy he is.  Words that do good for this mommas soul.  Of coarse this was of no surprise to me :)  I think he's pretty special.  Our sweet transplant coordinator Allison came to visit us in recovery.  She was so excited to tell us that they got a call 12 days ago that Noah was #2 for a heart.  They only call you when you are #1.  They all got excited seeing his name.  The #1 received the heart which means Noah is now #1.  We try not to get too excited over this.  This could all change if people move up on the list or if new people are added and they are at a higher category than Noah.  It all has to do with blood type, size, status and antibodies.

It has been a hard road of waiting and worry.  We are living our lives in limbo waiting for the next phase.  We rejoice with these small victories and are hopeful when we get good news.  We know we have a long journey ahead of us. We know that this new heart will not cure anything.  We know that it will come with other hard things.  We also know that this is God's plan for us.  We know that he works All things together for good. We know that he brings about these hard things so that the works of God can be displayed and we know that we can put our hope in him the creator and sustainer of life. Please pray for us as we strive to have joy in all circumstances.

"Take Me Out To The Ball Game"

Friday night we were so blessed by everyone who came out to show there love and support at the Angel Game.  Jason and I are still talking about what an amazing night it was.  It has been a difficult couple of months recently.  We are still waiting on a heart for Noah and all that comes with that impending surgery.  The news of our dear friend diagnosed with Cancer, family members dealing with difficult health issues, and news of me having to have pacemaker surgery sooner than expected.  The days have been long and heavy.

 What a treat to be able to spend the night with so many of you.  It was such a nice distraction for us and we have some new memories that are sure to last a lifetime.  There were so many highlights from Friday Night.  My Aunt came up from San Diego surprising us all,  Our buddy Geoff who is battling cancer and just spent 6 weeks in the hospital got to come, Noah's transplant doctor Dr. Alejos came to support, many new and old friends came, and finally our family along with a few special friends got to go on the field during the 7th inning stretch and help sing "Take Me Out To The Ball Game".  It was incredible and the joy in my boys face along with our buddy Geoff was enough to fill our cups for awhile.  Only God could have Orchestrated that special gift and opportunity.


Tomorrow is Noah's heart biopsy procedure.  We are headed down today to stay the night in Westwood because we have to be at UCLA at 5:30 in the morning.  This test will tell us how much the pressures in his heart have increased.  We would appreciate your prayers as we are all a bit nervous.  Would you also pray that God would give us wisdom in knowing when to schedule my pacemaker surgery.  We found out on Thursday that I need to have this done within the next 6 months.  The timing of it is not the best but we are trusting that the Lord will guide and take care of all the details.  Thank you all again for how you are loving and supporting us.  We truly feel so loved by you all.

Summer Fun

I have had a few of you ask what is on our Summer Fun List this year. To be honest It has been hard for me to compile a list this year.  I do not want to disappoint the kids if we get the call. One of our fears is that we get the call in the middle of Noah having a blast somewhere and he just cries the whole way to the hospital.  It would break my heart.  I don't on the other hand want months to go by either without living life.  We decided we need to move forward and just make adjustments as needed.  So here is our official Summer 2013 list.

Summer Fun List 2013

Smores

Farmers Market

Summer Reading Club

Angel’s Game

Food Trucks

Camp Lietzau

Backyard Movie Night

Costume/ Talent show Night

Brown bags for the homeless

Adventure week

Pool Party

Make Homemade Playdough

The Beach

Train ride to Zoomars Zoo

Fireworks

Learn a new skill

Picture/video scavenger hunt

Make a model of a California Mission

Picnic In The Park

Baseball Camp For Jonah

Swim Lessons For Hannah

Random Acts Of Kindness

Homemade Pizza Night

Indoor Fort Contest

Board Game Night

Complete Jigsaw Puzzle

Shaved Ice

Pen Pals

The Luxury Movie Theatre

Smoothie Contest

Prayer

As we are anticipating a call for Noah's heart we would love your prayers.  When we saw the transplant doctor last week, he said he would be surprised if we made it another month without receiving "the call".  This has been consuming my thoughts and it has been difficult to think about anything else.  We are approaching the one year anniversary of finding out about Noah's condition.  He has currently been on the list for over 8 months.  We really thought he would have his new heart by now. The longer Noah goes without his new heart the higher the chances of sudden death occur.  It is taking a toll on me physically as I'm not sleeping well and my stomache is in knots.  I don't want to be consumed by this.  I want to be faithful in laying my burdens down.  I don't want to fear the unknowns I just want to trust in God's good plan.  I want to use every bit of this for his glory.  Please pray that he would fill me with his perfect peace.

Since we started this journey Noah has kept a map and has marked people that have been praying for him all over the world.  We still have lots of empty states and countries.  If you see a place in the picture below that isn't marked and you or someone you know is praying for Noah, would you let us know.  We would love to fill this map up.  We are so thankful for all of you that have been on this long journey with us.

Don't forget to join us Friday June 14th at the Angel Game.  You can purchase tickets through the Website at www.noahsheart.org  Noah would love to see you all come out and root for his favorite team