Counting Our Blessings

Counting Our Blessings

Monday, December 31, 2012

Thankful



 My wife has been encouraging me to say a few words soI am sitting here trying to think of words or a word to describe this year for our family.  The word that comes to mind so clearly for me is “Thankful”.  I do want to be honest there have been some days over the past few months that I might have chosen some different words.  But let me take a second to share why I have chosen the word "thankful".  I was asked a question by my son Noah the other night that made me think for a second.  He asked…how has God existed forever?  I thought for a moment and then asked Noah, how has God not existed forever?  You see the way you answer these two questions changes the significance of the word “Thankful”.  If God does not exist and our families health issues are nothing more than bad luck, then the words I would use to describe this year would be more like…”anger” or unfair”.  It definitely would not be thankful.  But if there is a God who has created all things and what it says in Romans 8:28 is true that “we know that for those who love God all things work together for good, for those who are called according to his purpose”, then I have reason to be thankful. If this is true then heart conditions and muscular diseases are not bad luck, its God working out His souverign plan for good.  

With everything going on in our lives it has caused me to think more deeply about these things than ever before.  I recently read a portion of a book put out by John Piper called Suffering and the Sovereignty of God.  The book is a collection of thoughts and reflections on the topic of suffering written by people who have experienced some really suffering.  One section written by Stephen F. Saint caught my attention.  He was the son of a missionary whose father served in the Amazon jungle alongside Jim Elliot (there was a movie called End of the Spear that was in theaters a few years ago that tells there story).  When Stephen was 5 years old his father was killed by the very people they were trying to reach with the gospel, but through that Stephen and his family saw many of those people come to trust in Christ.  But in this section much of his reflection is about losing his daughter who I believe was around 19 years old do to a head injury.  I wanted to share a quote that I pulled from Stephen’s reflections that deeply impacted me.  It’s not the easiest words to digest, but I would encourage you to ask yourself, like I have…why would the alternative be better?  If God does not exist or is not all powerful (Sovereign) and loving, and does not intentionally allow things like heart conditions, why is that better or even more believable? 

Why is it that we want every chapter to be good when God promises only that in the last chapter he will make all the other chapters make sense, and he doesn’t promise we’ll see that last chapter here? When Stephenie was dying, the doctor said, “There’s no hope for recovery from an injury like this.” I realized that this was either the time to lose my faith or an opportunity to show the God who gave his only Son to die for my sin that I love and trust him. And then I watched. I watched my sweet wife accept this as God’s will and God’s plan. And you know what God has done through this? He changed my heart. He broke it.  He shredded it. And in the process he helped me see what he sees. I thought the worst thing that could happen in life was that people would go into a Christ-less eternity. There’s something worse than that. It is that our loving heavenly Father, the God and Creator of the universe, is being separated every day from those he desperately loves[…]”

I am not thankful for heart conditions, muscular diseases or just fill in the blank, but I am thankful that these things are not bad luck but that in God’s sovereign plan He has a purpose.  And that purpose is to reconcile Himself to us through His Son.  This is what should give us great cause for thankfulness and it does me as we begin another year.   

We continue to be grateful for the many ways you all have shown your love and support for our family.  2012 was certainly a challenging year for us but we have truly been blessed beyond measure by all of you.

Saturday, December 15, 2012

Transplant Holiday Hoe Down

Today we went to a celebration at UCLA for all the kids who have had a heart transplant or who are waiting to receive a heart.  It was an honor to be there, a lot of fun and a lot to take in.  I sat in my seat looking over each table wondering what each persons special story was.  There was a part of the day that brought me to tears.  They had a basket in the middle of the stage.  One of the doctors put a bouquet of white roses in the basket for the lives that have been lost of those who never made it to transplant or whose bodies rejected the hearts.  Then they had the kids line up who have received a heart and drop a red rose in the basket in honor of there donor.  It was very hard to fight back the tears as I watched these beautiful children and thought of the ones that had lost there lives and the families that had given the most precious gift.  Then to picture Noah standing in that same line was overwhelming.  Sometimes this just doesn't seem real to me until moments like these.  The whole UCLA transplant team was there and they were all so excited to be putting on this special event for all the kids.  They served a nice lunch and there was even a surprise visit from Santa who passed out gifts to all the kids.  I'm so thankful to be at UCLA.  The staff is so great and care so much for the kids.

I was really hoping to be able to talk with another family that was Noah's age that had his same heart defect.  The Lord made that possible near the end of the event.  This sweet little boy Aiden came up to noah and started talking with him.  I asked him if he had his heart transplant and he told me yes when he was four.  His Aunt then came over and we began to talk.  It turns out that Aiden who is eight has the exact condition as Noah.  We both acknowledged it was very rare to find children with Restrictive Cardiomyopathy.  Most of the kids have the other two more common Myopathies.  It was great to talk symptoms and wait times and medications and so on.  I was so pleased to get there information for future questions.  Talking with them made me feel so comforted but at the same time so much more anxious for "the call".  Aiden waited two years for his heart and in between was in and out of the hospital and at one point had a mild stroke.  I do not want to see Noah get weaker or sick.  It did warm my heart to see Aiden running around with his big smile and showing off his superman scar on his chest.  His Aunt sais they have a hard time keeping up with him now.  Praise God for his life and his spunky attitude.  I know he inspired Noah today.  He told me tonight it was so cool meeting Aiden and seeing his chest.

We have a long road ahead and we are taking it step by step laying it all at Jesus feet.  These children are precious gifts and are on loan to us from the Lord. He is in control and already knows the outcome.   I know he has Noah in the palm of his hand and I trust his will.  His good and perfect will.

Tuesday, December 11, 2012

Transplant Clinic

Well today we made the long trek out to UCLA for transplant clinic.  We enjoy going and spending time with the team.  It is a good time to ask all of our questions.  Noah had a list of his own this time.  He was so funny.  He asked "How many medications will I be on?" to which the doctor responded probably 10-15.  "Wow that's a lot and what are the side effects?" this kid cracks me up.  He wanted to know how long he will be on medications and when he gets his new heart.  Overall the visit was uneventful.  They will do an Echo with Dr. Chang next week.  He has been on the List for almost three months now and it really is just in God's hands as to when he will get that amazing gift of a new heart.


I really feel like God is preparing my heart more and more for what lies ahead.  I got to get away this last Friday to an all day silent retreat.  Wow was that good for this mommas soul.  A whole day to be still before the Lord.  I  spent time looking back at my life and how God has always been faithful to meet me in the darkest moments, I was able to recognize the sweetest ways he has used people, and events to show himself and unfold his beautiful plan in my life.  I'm so thankful I don't have to walk this journey with out him.  So thankful that he gives me the strength I need to endure each hard phase and the desire to persevere.  Thankful that he allows me to see that the hard stuff is for my good and necessary and that its not about me but what he is doing through me and through are difficult circumstances.  Oh how he is good.  We truly deserve nothing but hell and he is such a gracious father who lavishes his love  and grace on us.  So I choose Joy, I choose to wait on him as he reveals the next steps for Noah and the rest of our family.

Continue to pray as the Lord directs our steps and we wait for the "call".

Sunday, December 2, 2012

Saying Goodbye

This weekend we gathered with family and friends and said goodbye to a wonderful man. Jason's grandfather went to be with the Lord Friday November 23.  I had the privilege of knowing Harold for sixteen years. He was a great man.   He had such a sweet bond with my kids and they loved there "Grandpa Great".  Noah first started calling him that when he learned how to talk and it just kind of stuck with all the grandkids.

When you go to funerals it really makes you assess your life.  You wonder what kinds of things people will say about you, you wonder how many more funerals you will attend until Jesus comes or calls you home, and you wonder how the person you are grieving is enjoying being in the arms of there savior(if they are saved of coarse) It causes you to pray for those in the room that aren't believers and for the rest of the people in your life that need the Lord.  Funerals are opportunities to celebrate if you know the person is with Jesus after all that is our main goal to be with Jesus for eternity.  We grieve the loss for ourselves but celebrate the victory for our loved one.

It made me think of Noah and how horrible it is that in order for my son to live a little child must be taken. I think about this all the time.  It is one of the worst parts of this process.   I say horrible because I can only imagine the grief and the sadness that will take place.  I also think about what a heroic act the family must make in the midst of such grief.  I'm so thankful that my God has it all planned out and that he assures me all the time that it's for good.  I don't need to try and understand all I need to do is trust.

I long for the day where this is no more pain and no more sorrow.  I long for the day when there are no more funerals, no more tests and no more doctor appointments.  I long to sit at Jesus feet.  I long to be with him for eternity.

Tuesday, November 13, 2012

Jesus Take The Wheel

I know it has been awhile since our last post.  To be honest I have just been exhausted both emotionally and physically that its hard to get it out in a post.  Also there has not really been much to report on.  We are in the waiting stage. Waiting for a heart.  An exact match for our boy. This is a difficult stage.  I don't have a problem being vulnerable but I also don't want to bring every one down post after post.

I'm realizing more and more how much I like to have control over my life.  It is a daily struggle  to be okay with not knowing when we will get "the call" not knowing if my other son will have the same diagnosis, not knowing my diagnosis and how fast things with me physically will get worse, or knowing when my daughter will have her next surgery.  If I believe that God is sovereign over all things then I should rest in the fact that his plan is perfect and I really don't need to know.  But because I'm an ugly wretched sinner I do struggle.  Some days I'm just an ugly mess focusing on all that we are grieving the loss of and worried about the hard days ahead.  I listen to all the lies satan tries to feed me. Wishing I could so badly bottle up the good days when I'm strong, when I see God at work doing amazing things through are circumstances that it blinds me to all the mess.  I have longed for heaven more than I ever have before. I long for Jesus to wipe away every tear and right every wrong.  I'm so thankful that even in my darkest moments that Gods word holds true.  He will never leave me or forsake me. The Lord gives strength to his people, the lord blesses his people with peace.  I long to be past all this stuff in our lives but also do not want to miss out on all that God is doing through our circumstance.

Pray that God would help me to relinquish my need to have control, that he would increase my faith, and that he would help me to choose Joy in all circumstances.  Please also pray for Jonah.  He will be having his first heart echo on Thursday.  So far everything has looked okay with him, but they will be able to see more and get a better picture of his heart function after his echo.  We have told him about the test and that the doctors just want to see how good his heart is working.  Given his brother and sisters experience he is concerned that they might see something.  We have acted like it is no big deal but kids are smarter than we give them credit for.

Thanks for walking this road with us.

Wednesday, October 31, 2012

Update On Sweet Ivy




Ivy has been asleep for a very long time. And while we had moments seconds of what seemed like she was aware of her surroundings, nodding yes and no, even if for just a few seconds, today her eyes still wander when lifted open. She has a very invasive bi pap mask on that is blowing a hurricane in to her and she does not protest it or even reach for it. They say that the drugs are in her tissue and she could just need more time. However they were very quick to comply to my request of Neurology coming out to take a look at her. I'm so thankful that they include me in every decision and every plan. They never round without me, if I run to the restroom (there are none on in her unit), they wait, knowing I will be here. They always ask me if I have questions or concerns and they always spend as much time with me as I need.
She is getting an Echo right now, just to be sure all is well with her heart, and she will get a full eval from Neurology this afternoon. 
A music therapist came in today and played for her. Thank you Jen for setting that up!!! At PCH they use classical music as therapy for the healing process from day 1. Here they have no such thing. And PT and Child Life were in the room from day one too at PCH. Here we have not seen Child Life or any therapists at all and it's been 2 weeks. I think that is odd for the #1 hospital in the world, but we know they get that rating from the medical aspect. And it is well deserved!! 

Due to not breathing more than just shallow breaths (since she is in this deep sleep) her right lung has collapsed. It is a little better this morning, but still the bottom half is fully collapsed. 

Her body is not urinating on its own, she is requiring a cath again. She was without it for several days but after going all day Monday without making a wet diaper, they put the foley back in Monday night. 

She does move her arms and legs, she does turn her head. This happens every 3-4 hours for a few seconds, then back to sleep with no movement she goes. 

So my prayer requests today are obvious and desperate.

I have sobbed with a very heavy heart this morning. My little girl has been through so much. And she can't wake up to breathe on her own! I'm crying out to God today. I'm asking that He agree that she's been through enough. That He breathe life back in to her little body and reignite her spirit! That we see Ivy come back to us, today!  

My prayer request to all of your are obvious.
That Ivy would wake up.
That from a neurological view, there is no cause for alarm.
That God would continue to breath life in to her lung and her body.
And that God would continue to give me the strength that only He can provide. I have nothing left to give, but every day He makes me new again. I am empty at 1am as I lay my head on my pillow but at 5am I rise anew again. Filled with the strength to get through one more day. 
From Mary
I will be in great prayer today and my faith will be renewed and I will be reminded that when I am weak He is strong. For faith is being sure of what we hope for and certain of 
what we do not see. Hebrews 11:1


Friends please pray for this sweet little girl who has been through so much and please also pray for her mom Mary.




Thursday, October 25, 2012

Active Again

I know it's been awhile since my last post.  We have been recouping from this viral infection Noah caught.  We knew it was bound to happen.  Even though  I had been faithfully, sanitizing, passing out vitamins and filling there belly's with Emergen-C there is just no avoiding it. Whenever Noah gets a fever we have to let the transplant team know so they can put him inactive on the list.  He needs to be free from infection to accept his new heart.  I have to say in a small way it was nice to not have to worry when my phone rang or be in a panik that at any moment we could get "The Call".  We are however thankful that Noah will be put active on the list again tomorrow. Thankful because its what he needs to continue to survive and feel good again.  We took Noah to see Dr. Chang today and he is putting him on a Beta Blocker medication.  We are awaiting the Treclear in the mail that Dr. Alejos ordered him that will help prepare his lungs for transplant.  This will make three, which to some may not seem so bad.  But a few months ago he wasn't on any and soon he will be on 15.  It's a lot sometimes for us to process as these things become our new way of life.  We know were not alone in this and that help us get through this not so fun road.


Please continue to pray for Noah.  We have updated his prayer map.  If you are praying for Noah in one of the states that doesn't have a heart sticker, please let us know we would love to add you and fill up his map.

Check out what amazing things God is doing with Ivy.....

A lot of you have prayed with me for sweet Ivy Joy and I just want to share her latest miracle-
God is always moving mountains as you will read on Mary's blog

Monday, October 15, 2012

Blessed Beyond Words

Oh sweet friends I can't begin to describe the overflow of Joy I'm feeling right now.  Blessed beyond words to have this level of love and support flow out from each one of you.

Last night our wonderful Church family put on a cook out and pie auction to help raise money for future medical needs.  Raise money they did indeed.  They raised over $10,000.  Honestly it was so much more than the money that they gave our family.  They showed us that when one of the body hurts we all hurt.  They showed us Joy in giving.  They showed us sacrifice.  They joyfully served and loved on us so well. They showed our children that we just don't read God's words and commandments we act them out.  It was such an incredible fun and emotional evening. We are blessed to be apart of an incredible church body.

As I said in my facebook status "Thankful is just not strong enough of a word to convey the emotions I'm feeling right now. So much love, thought, creativity, organization, and fun went into providing such an incredible event. So blessed to be apart of a church body that really displays the LOVE of Christ so well. You all mean the world to our family. From the bottom of our hearts we thank you.

Also a special thank you to Amanda Oakes for her countless time, planning, and running of the event and her amazing team for pulling it all together.  Our family will never forget it.  

Thank you also to Lucy Nolan from Channel 4 NBC news for coming out, shooting the event, and even buying a pie :)

For lots more pictures go to our website at www.noahsheart.org

Wednesday, October 10, 2012

Please Pray For Sweet Ivy Joy


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So many of us have followed Ivy's amazing story since she was placed in Mary's arms in China just eight months ago.  We have marveled at the way prayers have been answered for this precious child.  Now, more than ever, Ivy Joy needs your help...  She needs your prayers, and she needs your support to come along side her family as they prepare for their arrival in Boston on Sunday where Ivy Joy is scheduled for life saving open heart surgery on Friday, October 19th!

A group of Mary's friends have come together with a special fundraiser for Ivy Joy. The dollars raised will go to offset travel, hotel, meals, and incremental medical expenses for their time in Boston, and beyond.  So the purpose of this post, is to get you all involved.   This is how you can help TODAY!!

1.  Buy a Tee-Shirt or Buy multiple Tee-Shirts!  These shirts will be regular fitted heather gray tee shirts for women and girls.  The Team at Wild Olives has lovingly gone above and beyond to help us get the quality of shirts we all have come to love from their collection.  **The order button is at the bottom of this post or at the top of my sidebar.  I will be facilitating the distribution of these shirts when they arrive!  I am beyond thankful to Stefanie and Colleen for working behind the scenes to make this shirt possible!

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2.  Spread The Joy by Spreading the Word!  Please share this post on your blogs, Facebook pages, Grab our button, etc..  We will take orders until Thursday, October 18th.  Shirts will be shipped as soon as they are ready, which we are estimating to take 3 weeks!    Tell everyone you know about this precious baby girl and how they can help!!


Spread the Joy

3.  PRAY for Ivy Joy, for Mary and Bryan and for the entire "S" family as they faithfully let Ivy go into this surgery she so desperately needs.  Ivy NEEDS prayers for protection, for healing, and for the strength to endure what is ahead for her to recover from this major operation!  Ivy's life thus far, is a reminder that "Nothing Is Too Big or Too Hard for God"!  Ivy is scheduled for an echo on Monday, a Heart Cath on Wednesday, and Open Heart Surgery on Friday of next week.

Mary will be updating her blog with Ivy's Boston schedule.  Please stop  and leave Mary a note of encouragement.  You will find Mary's blog here.

Thank you for loving this baby girl and her family!  Now please help us
"SPREAD THE JOY"!!!!!

Women's Regular Fitted Tee-Sizing
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ORDER BELOW..  Any questions can be directed to joyforivy@yahoo.com
*SHIPPING is FREE
Note:  To order, click on the Women or Girls Shirt in the first drop down menu.   Then go down to the coordinating drop down for Women or Girls.  You enter one shirt at a time, by clicking on "Add to Cart!"  If you are ordering multiple sizes, go to "continue shopping" on your invoice screen..  If you make a mistake, no worries, just email me!!  :)

THANK YOU!!!!



Sizes
Women's Sizes
Girl's Sizes
  

Thursday, September 27, 2012

She Continues To Amaze

For those of you who have just started reading our blog this year.  Our precious blessing who we adopted a few years ago, amazed the doctors who gave her a 30% chance of survival when she escaped death, and left the hospital five days after having major heart surgery.  The doctors were scratching there heads as they tried to figure out how her arteries had opened overnight.  It was a beautiful Miracle that the Lord allowed us to witness two years ago.  Since then she has continued to do great passing each and every milestone.  We knew she was gonna need another open heart surgery (the fontan) between 4-6 years of age so this heart cath she just had done did not come as a surprise for us.  The timing however was not the greatest. Ha! However the results of her heart cath did.  Before she went in for this procedure, the surgeon shared that they would most likely need to do some ballooning or put in a stent to help open up her pulminary arteries.  She talked about possibly needing to coil several extra blood vessels and checking her pressures.  I have to admit I was a nervous wreck.  The last time we went through this she was so fragile and she went into heart failure hours after this procedure.  I was praying that she would go in and amaze the doctors once again.  I was stunned when the doctor came out and said she looked great and that the pulminary arteries looked amazing.  They did not need to touch them, said her pressures looked great, and that they just needed to coil two of the extra blood vessels.  Could not have asked for better results.  This girl is a fighter and has endured a lot in her short years of life.  I love her to pieces and she continues to amaze us all the time.  I'm so blessed to be her mommy and marvel at all that God has done to save her precious life.  We will see Dr. Chang on Tuesday and discuss the timing of her upcoming surgery.  No doubt she will pass that one with flying colors as well :)  please continue to pray for the timing of her surgery as we wait for it and Noah's future transplant.  We are confident God has it all worked out but unfortunately we are just like those silly Israelites and forget every so often and worry, worry, worry.  Just like them we need to be bopped on the head to remind us once again.  He's never failed us.  Ha!  Thank you all for your prayers and encouragement and we apologize for not getting the chance to respond to each one but we read them all and they are so encouraging to us.


Sunday, September 23, 2012

Keeping it real folks

I have tried for a few days now to write a post and have found it very difficult.  It is hard to describe the range of emotions I have been feeling since Noah got listed.  It was something we had been striving to get to.  I mean after all it is what is needed and necessary to save our sons life. It is hard hearing my son say his heart hurts time and time again and to see him get weaker.  It is one step closer to him feeling better.  It also brings about a lot of worry that at any moment we have to be prepared to get a call that will ultimately tell us it is time for the biggest , riskiest, life altering surgery anyone would ever have to face.  It also means someone will be mourning a loss so that our son can gain life.  I think about the long car ride to the hospital and the final moments before they take him into surgery.  I think about the 15 different medications he will be on afterwards.  I think about the countless trips to the hospital that will follow his big surgery and the fact that he will most likely have to go through this a second or third time in his life. I think about all these things.

Then I think about how lucky I'am that God has allowed me to be his mom.  I think about the fact that Noah ultimately belongs to the Lord.  I remember God's goodness and how faithful he is to show himself in beautiful ways.  I remember God's word in 2 Corinthians that says for this light and momentary affliction is preparing us for an eternal weight of glory beyond all comparison.  I remind myself of the ways God is deepening his relationship with Noah during this time and all the ways God is working in people all around us.  I'm thankful for the ways he is deepening my faith and refining me for his Glory.

He is so faithful to give me encouragement when I really need it.  Moments ago I got this email and it brought me to tears.  I love being able to share these things with Noah so he can see what the body of Christ looks like.

 It has been weighing heavily on my heart to contact
your family. I am from Monterey California. A little more up north from
where you are. I work as a server in a restaurant in Carmel Valley.
Anyways, I was serving and doing my daily duties as always....
When I couldn\'t help but notice a ladies bracelet that I was serving. I
saw that it said \'Jeremiah 29:11\' I then complimented her on her
bracelet....and told her that was my favorite verse in the bible. I asked
her where she got her bracelet and that is when she flipped it over and
showed me the website, also explained Noah\'s story to me....I was so
touched. I promised to pray, and also asked her for the website
information....I asked if I\'d be able to get a bracelet on the
website....she then took her bracelet off and gave it to me. It made me
cry...I was so thankful. I will pray every single day for Noah. He has
touched my heart. Gods grace is sufficient. I feel blessed to share
Noah\'s story, and spread the word. I truely  believe in the power of
prayer....and from my little town to yours....your family will continue to
be in my prayers!!
Meghan

Thank you Meghan for being apart of Noah's Journey and for linking arms with us in prayer.  Thank you to the rest of you for allowing me to where my heart on my sleeve.

Tuesday, September 18, 2012

His Grace is Sufficient


We are so incredibly grateful to everyone who showed up to the Chick-Fil-A fundraiser last night.  The turnout blew us away!  Obviously the purpose of the event was to raise funds to Noah’s upcoming surgery expenses – and it did - but last night our family walked away encouraged and strengthened especially as we think about the difficult days ahead.  Last night Melody and I went to bed praising the Lord with tears in our eyes amazed at how the Lord poured out His blessing through all of you.  The amazing thing about last night is that it was just one of many examples of how we have seen the body of Christ come together.  You all have been teaching us so much about what it means to stand shoulder to shoulder, encouraging one another to “press on toward the goal for the prize of the upward call of God in Christ Jesus.”  

As I thought about last night there is another way that God has been continually encouraging our family during this time that I think we so often overlook or miss or at least I have in the past.  For me it brings such encouragement to see so many people living their lives faithfully unto the Lord.  I am more convinced than ever that the way we live our lives is a testimony that God is using to mutually build His church.  Not that we are perfect, but that in light of Gods Grace that we can confidently claim 2 Corinthians 12:9 that “My grace is sufficient for you, for power is perfected in weakness.”  Most gladly therefore, I would rather boast of my weaknesses so that the power of Christ may dwell in me.  I can not think of a time in my life that I have felt more weak, but at the same time seeing the works of God more clearly displayed all around us.  I truly have nothing to boast in except the power of Christ.  This time has been a reminder for me that I can bring nothing to God – not righteousness, goodness our skills and abilities.  What do we have that has not been given to us?  Romans 5 says, For while we were still helpless, at the right time Christ died for the ungodly.  Then Romans 5 goes on to say, that “God demonstrates His own love toward us, in that while we were yet sinners, Christ died for us.”
I probably am writing this blog post as much for my benefit as anything else – it’s a reminder that God first reached out to me in my sin and helplessness.  But I also share it because this is the core of the gospel and the answer to a question that Mel and I have been asked many times in the past few months…”how do you guys do it?  You have so much going on in your life.”  My answer is simply that “Gods grace is sufficient”     

Please pray for us as Noah has an appointment at UCLA with one of the Cardiologist and a Neurologist.  Right now we are so focused on the urgent – which is getting Noah a new heart but with some updates to Melody’s diagnosis the doctors anticipate that Noah may also have Muscular Dystrophy.  We are hoping to get more information tomorrow.  Also please pray for Jonah.  He was tested as well for the gene mutation that was discovered in Melody.  We obviously hope his test turns out negative

Tuesday, September 11, 2012

So Much Going On

I'm sorry it has been awhile since our last post.  For more up to date info on Noah you can always check the website at www.noahsheart.org .  I have been trying to get into a new routine with the kids back to school, and all of us juggling doctor appointments.  It has been tricky but we are all making it work.  Jonah is doing soccer as well.  We might be nuts by doing that but we wanted this sweet boy to have some well deserved attention and something of his own right now.  We are so worried that he will get lost in all that is going on with the other two blessings and we don't ever want him to feel less than.  A lot has been going on.  This past weekend a wonderful soft ball team SO Cal Wicked held a tournament in La Habra.  They wanted to help our family out in some way and boy did they deliver.  The wonderful girls went around collecting pledges for every hit they made, they had bags all over the field for recycling and a table set up for donations and raffle.  Noah felt like a celebrity the whole weekend as he hung out with the girls and spotted his picture on a couple dozen posters plastered all over the campus.  The girls had special shirts made up with his picture on them and he even got to do the coin toss for one of the big games.  We cant thank you enough Dave and all you girls and a special thank you to Auntie Jamie and Uncle Josh who worked a booth both days in the blazing heat.  what an incredible event.

Last Saturday we met with Dr. Chang to discuss Hannah's upcoming surgery.  He wants to do a heart Cath to see what's going on and how her pressures are doing.  This is not a fun test.  She has to be put out and stay overnight for observation.  Her heart is still very fragile so anytime they have to do anything it poses a big risk.  The last time they did a heart cath she went into heart failure hours later and we almost lost her.  Not sure it was related but none the less its scary and this momma will not be leaving her side.  It is Scheduled for September 27th at 8:00a.m.  We would appreciate your prayers.  if all looks good they will try and hold off on her surgery for six months to a year.  We are trusting the Lord for the perfect timing for both her case and Noah's.

Noah is doing good.  At his last appointment they ordered a new medication that will help strengthen his lungs and we are waiting to get it in the mail to start it.  We are thankful for this medication because someone with Noah's condition poses a threat to damaging his lungs causing him to need a dual heart/lung transplant.  We do see him getting more tired.  This is to be expected and it makes him long even more for his new heart so he can feel great.  He really has handled everything well and is such a brave little guy.  We are very proud of him.

It has been incredible to see the community and complete strangers give of there time, money and resources.  We feel beyond supported and loved by all of you.

Tuesday, September 4, 2012

Quick Update

I'm having a difficult time tonight expressing in words how I'm feeling.  We are certain Noah will be listed in the next day or so.  We also know from looking on the UNOS site that it could pontentialy be very quick like hours from him being listed to days to months.  You would think I would be happy about this news. I really don't know what to feel.  The reality of it is we still have another child who also needs heart surgery that we have to work around as well.  The stress of trying to work out the timing of it all can be daunting.  I have realized in these times how much I like to be in control and am certain God is teaching me some valuable lessons here.  At the doctors today they put Noah on another medication.  This one will help his lungs and will also help after transplant cut down on the amount of time he will spend on the ventilator.  They also did some xrays and drew more blood.  Everyone has been so great and helpful and we feel like we are getting the best care.  It is a good feeling.  I know God already has this all figured out and we are daily putting our trust in him and putting one foot in front of the next.  He has been so good to give us strength when we need it and amazing grace in those moments when we don't deserve it.  Please continue to pray with us as we look ahead and put our trust in the timing of these events. Please be sure to check the website for weekly prayer requests and other information.  www.noahsheart.org

Tuesday, August 28, 2012

Abundant Outpouring Of Love

To say we have felt loved and supported during this difficult time is an understatement.  We simply cannot express enough how grateful we are for the abundant outpouring of love we have received.  you all are coming up with the most creative ways to raise funds.  It brings me joy to hear the stories of neighbors and strangers being touched and moved by Noah's story.  Tonight one of his buddies came over with a package of funds.  He had made up a flyer saying he would rake leaves and do small jobs to raise money for his buddy Noah's heart.  His dad was so moved he donated his earnings from a days work doing side jobs, his mom and brother baked cookies to sell, and his aunt decided she would donate her earnings from a weeks worth of cutting hair at her salon. A family member donated enough funds for us to buy an AED.  There has been impromptu lemonade stands, garage sales,anonymous donors, wonderful meals, and sweet gifts.  There has also been people who have or are organizing events, making calls, sending encouraging texts, watching kids, running the website, and so much more.

Tonight I got to sit down with Noah and talk to him about the beautiful ways people are supporting him. He couldn't believe his sweet friend worked so hard and was amazed that even strangers are giving.  I told him that God was using him to make an impact in peoples lives and it brought a smile to his face.  In the midst of hard stuff God is doing beautiful things.  I pray that we would continue to see the ways that God is working and not be blinded by our current circumstances.  I pray that you would all know how much we love you and appreciate the thoughtful ways in which you are being Christ's hands and feet.

Noah's website is www.noahsheart.org

Sunday, August 19, 2012

Overwhelmed In The Greatest Way

Thank you so much to My wonderful Sister and brother in law for organizing such a wonderful event.   Tonight we spent a wonderful evening with over two hundred friends who came out to support Noah and the Angels.  Some of us met early to hang out and tailgate.  There was a beautiful sign made with a wonderful picture of Noah.  When I saw it I lost it.  Seeing his face on a sign that said Noah's heart just made things a little more real for me.  There are times we still think this is not really happening.  We know no matter what we are not alone in this and you all made that clear tonight.  It was exciting to see two of Noah's doctors that are so instrumental in all this.  Dr. Chang came and Dr. Alejos.  Noah had a blast hanging out with them and we felt so blessed that they would even take the time to come support us.  The biggest highlight for Noah was getting on The Jumbo screen and seeing his name up on the board.  He danced his socks off and it made my heart swell. We even got to talk to complete strangers who wanted to buy bracelettes and hear all about Noah.  He will be talking about this night for days.  We truly can't thank you all enough for a wonderful night.

Tuesday, August 14, 2012

Waiting in Hope

It's Marla again.  Mel asked me to update regarding her appointment today while she tried to get her mind OFF of it in Balboa.

Some disappointing news.  After thinking that she would receive a hopeful diagnosis today, she was met with more waiting.  No sure diagnosis, and more tests.  They did, however, let her know that they discovered a gene mutation that could lead to a diagnosis.  The next step was to test Noah and Jonah (those tests were done today).  If Noah ends up testing positive and Jonah negative, then they will most likely have a diagnosis for Mel - Laing Distal Myopathy.  They will find out the results of Noah and Jonah's blood tests on September 19 and go from there.  It sounds like this diagnosis fits Noah's cardiomyopathy well.

So, in light of this news, please pray specifically that Noah's test would come back positive and that Jonah's test would come back negative.  Please also pray for the whole family (especially Mel) in this newest waiting period.  Pray that they would be able to wait in hope - knowing more and more deeply that their hope (and all of our hope as well) is not in a good diagnosis or even a sure diagnosis, but that our hope rests securely in the Alpha and the Omega, in the Creator and Sustainer of the universe, in our Redeemer, Christ, and His finished work on our behalf.

As we wait together with the Lietzau family during this time, let's not wait passively or try to distract ourselves until September 19.  Let's fix our eyes on Jesus, the Author and Perfector of our faith, and daily plead before the throne of God, trusting that he is accomplishing and will continue to accomplish his GOOD plans for this family.  And let's choose to trust that he still hears and answers prayer and loves to accomplish his work through the prayers of his children.

Let the words of this song by Walt Harrah help you as you pray for the Lietzau family this week...

Unto you, O Lord, I cry for help
I lay my requests before your throne
I wait in hope
Now let your will and purpose be known

Calm my anxious thoughts, and still my heart
Til peace like a river floods my soul
I wait in hope
Relinquishing my need to control

Lead me in the way of righteousness
And straighten the path marked out for me
I wait in hope
My faith is placed in your sovereignty

Thursday, August 9, 2012

We Are In Good Hands

Today was our long awaited appointment with the transplant team at UCLA.  We started the morning off meeting with six people from the transplant team.  We talked for three hours and went over a ton of information.  We then grabbed a quick bite to eat, got some labs done, took a tour of the PICU floor, game room and private rooms, and ended our time talking with one of the transplant surgeons.  It was a long day but very helpful. Everyone was so wonderful, made us feel great and we walked away just feeling so grateful to finally get to this wonderful place.  We learned a lot and feel more at peace as much as one can feel in this situation.  They are going to list him right away probably in the next 30 days.  We had been told previous that Noah's pressures were high and we really had no idea what that meant.  We did learn today that the normal pressures in a person are 4 and his number is 14 and continuing to increase.  Just to give you an idea the surgeon said he sees patients at complete heart failure and there numbers are between 25-40 so his are high and we do not want him to get to the critical point.  The team's main goal is to get a heart NOW while he is able to be at home before Noah goes into complete heart failure.  We think that sounds like a GREAT goal.  We will be in contact weekly with the team and once we are listed we have to stay close by.  They are still estimating 6-9 months but it is very dependent on a lot of factors still.  Another positive thing today is that he gave Noah permission to go back to regular activity. No competitive sports but he can run and play like a normal kid.  The reason for this is because they need to gage his response.  He has been on no activity since January so they can't tell if he has slowed down.  They want to see how tired he gets and how out of breath he is.  Great for him scary for mom and dad :).  He tested this out when he got home tonight and he did one lap and ran up the stairs and his breathing was very labored.  I was very surprised by this and it made me a little sad.   Up until now he hasn't really shown any signs that he has a sick heart.

Please continue to pray that God would protect Noah until he gets his new heart or that he would completely heal him and take it all away(we do have a big God who is capable of this) Pray that he would be able to process all this information and ask us all his questions.

Pray that God would use this situation for his glory

Thank you once again for all your love and support, we are beyond grateful for you all.