Counting Our Blessings

Counting Our Blessings

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

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.

Sunday, August 5, 2012

Noah's Prayer Warrior Map

We bought a United States map and a World map to show Noah how many people are praying for him all around the world.  We have marked a few states so far.  If you are out of state or in another country and have been praying for our sweet boy, would you please drop a note and tell him.  You can leave a comment here or on his face book page Noah's heart.  We want to see if we can get this whole thing filled up :)

Wednesday, August 1, 2012

by his own hand, he leadeth me

Hello dear friends of the Lietzau family.  This is Marla, guest blogging tonight so that Melody can get some much needed rest after another big day.

To start off, I want to extend two huge thank yous - first, a thank you to the entire Lietzau family for their humility, courage, grace, honesty, vulnerability, generosity and faith not only in stepping confidently into these good plans that the Lord has chosen for their lives, but also in sharing their fears, their struggles, their victories, and their uncertainties with so many.  And secondly, a thank you to those of you who have committed to linking arms with these friends and who have already sacrificed for their sake.  Thank you for being willing to enter into suffering and learn how to grieve, to hope, to trust, and to pray with this family.  Thank you for loving these friends more than you love your own comfort and safety.  May we all press on in this good work and excel still more as we become extensions of the love and grace we have received in Christ.

Here are the updates from today that I got from Mel.
-Noah's ECHO today came back unchanged.  She said everything looked the same.
-There were some changes Hannah's EKG, so they gave her a Holter monitor (portable EKG monitor) to wear for 24 hours.
-Melody went to Urgent Care because she has been experiencing dizziness for the last two days.  She is back home after finding out that she has some fluid in her middle ear.

This is what is coming next.
-Noah has his appointment with the transplant team at UCLA on August 9.
-If everything looks good with Hannah's 24 hour monitor, she will have a follow up appointment in three months.
-Mel will be going in next month for an ECHO.
-Jonah will go for an ECHO in 2 months for an initial visit

This is how we can be praying.
-Pray for Mel - that in the coming days and months the Lord would sustain and strengthen her as she continues to walk along the path marked out for her.  Pray, too, for this ear problem - she isn't able to take decongestants, so she'll be taking antihistamine and ibuprofen to try to get rid of this!  Pray that it clears up quickly and that she would have patience with herself and with others as she is physically weak.
-Pray for Noah - that the Lord would keep this boy's heart strong enough to live life with his family and friends, that he would stay out of the hospital, and that as he anticipates this heart transplant and all that it will entail he would have a growing understanding of the reality that Christ had to die in order that he might have new life.
-Pray for Hannah - that these changes they saw on her EKG would be shown to be nothing after this 24 hour heart monitor and that God would strengthen her little heart and keep it functioning as it should.
-Pray for Jonah - that he would be protected from fear as he enters his own test in a couple of months, and that it would ultimately show that his heart is healthy.
-Pray for Jason - that God would be near to him, shepherding him as he tries to shepherd his family well.  Pray that he would have wisdom and courage to be an advocate for the good of his family, and pray that the Lord would provide richly for all of his needs as he works hard to provide for the needs of his family.

I'm so thankful that we can be a people who have more than just a glimmer of hope.  In all of these things, we abound in hope!

"For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us...For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God...Now hope that is seen is not hope.  For who hopes for what he sees?  But if we hope for what we do not see, we wait for it with patience.  Likewise the Spirit helps us in our weakness...And we know that for those who love God all things work together for good, for those who are called according to his purpose...What then shall we say to these things?  If God is for us, who can be against us?  He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?" (excerpts from Romans 8:18-31)

There is comfort in the assurance of the presence and purpose of God.  He leads his children directly.  He hasn't hired any extra help to lead and guide us, to discipline and refine us, to comfort and encourage us - he does it directly.  Like the old hymn says so well, "He leadeth me, he leadeth me, by his own hand he leadeth me!  His faithful follower I would be, for by his hand he leadeth me."

Father, help us to follow faithfully as you enable us to trust that it is, indeed, your good and gracious hand that leads us.