il_fullxfull.341326856

Thanksgiving

Thanksgiving is fast approaching and we have so much to be thankful for: Our sweet boy has made it almost three years since his first diagnosis in January 2012. He has been on the transplant list for over two years now and has remained hospital free. I can’t tell you what joy it brings me

Read more

praying-hands

It’s not about the why it’s about the Who

The last two weeks have been rough. I have been to at least eight doctor appointments. Six of which have been for me. I have been told after allergy testing that I’m allergic to almost everything except foods(Thank you Jesus),I had a CT scan of my sinuses, told I need tubes put in my ears,

Read more

Doctor-s-appointments-523_l_b55c2ae6a6246bd4

Meeting Update

We are thankful for all your prayers. We got word today from the transplant team at UCLA. After much consideration they have decided that Dr. Changs opinions were very valid and raised great concerns. They are sorry for not consulting him before they met with us but feel it is best that Noah remain on

Read more

pat

Leaning On The Promises Of God

We are constantly amazed at how rapidly things change with our situation. Last week we were thrilled to hear how well Noah’s pressures were in his heart after his heart cath. They were contemplating taking him off the transplant list for awhile. We drove down to UCLA and had a wonderful meeting with the transplant

Read more

2012 Lietzau Family 90

Blessings Abound

Well Noah is Officially a status 7 on the list. This just means he is in-active for now. Since the news on Monday that this could be a possibility I have had a mixed bag of emotions. Happy, worried, confused, anxious etc. I had a ton of questions and not a lot of answers. When

Read more

48074_10200660837346873_595826056_n

To God Be The Glory

Yesterday was Noah’s heart cath. We got up early and arrived at UCLA at 7:30 ready to check in.  Noah’s procedure was delayed by two hours but we kept busy by playing games on the ipad.  Noah was nervous and asked us to pray for him.  Truthfully he wasn’t the only one nervous.  We were

Read more

IMG_4813

It is well with my soul

Wow!! Time has gotten away from me and I can’t believe it has been so long since my last update. We started school and it has taken some time to adjust to our new routine. We are enjoying some much needed structure and it has gotten our minds off of all the medical jumbo looming

Read more

10505301_10204126864068679_2672620806720638860_n

Angel Game #3

Thank you so much for those that came out to support us at the Noah’s Heart Angel game. We had a great time. It was a fun night but I was not prepared for the flood of emotions that came over me. It started when Uncle Josh told Noah he was going to get to

Read more

219975_208208665885973_145138128859694_601844_4342446_o

Hannah Update

We are now more than 48 hours since Hannah had her surgery and she is doing terrific. One of the goals is to lose more and more wires and tubes each day. All the tubes and wires that she is hooked up to looks like a tangled mess and makes it difficult to move around.

Read more

4537175786_96f711c423_z

HUGE PRAISE

It is with a joyful heart that we are happy to tell you all that Jonah’s genetic testing for the Desmin Myopathy came back NEGATIVE.  We can not believe it and know what a gift from the Lord this is.  We also did not expect to hear so soon.  The doctor took the time out

Read more