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