Counting Our Blessings

Counting Our Blessings

Wednesday, June 19, 2013

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.

Sunday, June 16, 2013

"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.

Tuesday, June 4, 2013

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

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
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