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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.

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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

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Hannah’s Surgery

  Today we met with Hannah’s surgeon Dr. Gates.  I have to admit it was a little overwhelming to sit across the room from the man who played a big part in helping save our little girls life four years ago.  We discussed the process of the Fontan operation Hannah needs to have and what

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Summer Fun

Summer Fun

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A Diagnosis

  Thank you so much Marla for giving everyone an update.  It has been a a lot for us all to process and we are still taking it all in.  Months ago Jason, myself, and Noah had a full genome sequence panel done.  We were hoping they would find a genetic link between Noah and

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On The Horizon

I apologize for the lack of updates.  I feel like at times I have been running a marathon and my body and emotions just can’t keep up.  I want to sit and write and I emotionally can’t put my thoughts into words. I’m going to start with giving some details about Hannah and how she

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Thank You

Oh sweet friends and family… we are once again overwhelmed by the love and support you showed us last night. Chik-Fil-A was hopping from 5-8.  It was so much fun talking with everyone and meeting so many for the first time.  We are honored that you would journey with us, and love us, in that

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Somebody turned 11!

WOWZERS!!!  I have an 11 year old!! That is just crazy.  That means in two years he will be 13, and then three years after that… 16!   Oh dear. I’m very emotional today.  I’m just so blessed that God has allowed me to be this boy’s mom.  He truly is a gift.  Our prayer

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Patience

Noah had his appointment at the UCLA transplant clinic this week.   It was the usual visit of labs, echo, and meeting with each member of the team. The visit went great and everything looked the same. We asked our usual question… “have you seen Noah’s name come up on the transplant list for a

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Doctor Appointment Recaps

I wanted to update you all on the recent doctors visits for both Noah and Jason.   Noah saw Dr. Chang & Dr. Alejos yesterday.  There were no big changes from the last two months.  He is going to put him on one baby aspirin a day.  The doctors discussed the possibility of him having

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