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.

"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.

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

Smores

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

Fireworks

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

Prayer

As we are anticipating a call for Noah's heart we would love your prayers.  When we saw the transplant doctor last week, he said he would be surprised if we made it another month without receiving "the call".  This has been consuming my thoughts and it has been difficult to think about anything else.  We are approaching the one year anniversary of finding out about Noah's condition.  He has currently been on the list for over 8 months.  We really thought he would have his new heart by now. The longer Noah goes without his new heart the higher the chances of sudden death occur.  It is taking a toll on me physically as I'm not sleeping well and my stomache is in knots.  I don't want to be consumed by this.  I want to be faithful in laying my burdens down.  I don't want to fear the unknowns I just want to trust in God's good plan.  I want to use every bit of this for his glory.  Please pray that he would fill me with his perfect peace.

Since we started this journey Noah has kept a map and has marked people that have been praying for him all over the world.  We still have lots of empty states and countries.  If you see a place in the picture below that isn't marked and you or someone you know is praying for Noah, would you let us know.  We would love to fill this map up.  We are so thankful for all of you that have been on this long journey with us.

Don't forget to join us Friday June 14th at the Angel Game.  You can purchase tickets through the Website at www.noahsheart.org  Noah would love to see you all come out and root for his favorite team

Another Miracle

I read the following story below and was reminded of how much our Lord is in control.  It is so easy to get wrapped up in the prognosis of our diseases, the gloomy percentages and what the doctors say the long term effects may be.  The truth is they are just man like you and I. People who easily make mistakes and don't know it all. They can only go on what they have seen.  They are not God who is soverign over all.  God's word says in Mark 10:27 "With man it is impossible, but not with God.  For all things are possible with God."

I am so in awe....

today was the start of a long week of hospital appointments for the kids.

A week that I thought would be grueling has me hardly able to take a breath and feeling like I am floating on air!

Some of you may remember that last year we walked through a nightmare....

thinking our son was going to lose his vision,

then finding out he had Albinism and low vision.

The things we were told:

* He had at best 20/50 vision (with glasses)

* It was anatomically impossible for it to ever improve (he was literally born without a fovea in either eye so his eyes would NEVER be able to focus better)

* He may never be able to drive

* He would need special dark pencils, classroom aid equipment etc. because he REALLY struggled with low contrast stuff

* He could not do any sports where a ball or object was coming at him

* It may not be safe for him to ride a bike much longer

We were SO excited that he would still have some vision and amazed at God's grace in that.

We started appointments with the Low Vision Clinic,

added a second pair of 'desk' glasses for up close work,

added a 'powerdome' to help him read,

added an Android tablet to help him make letters bigger....

all of these things were helping alot but we knew down the road he would probably need more help in the classroom.

So today we had our scheduled Low Vision Clinic meeting to run tests and see where we were at....

The doctor started testing....

and he kept saying, "are you seeing what I'm seeing?"

I kept nodding my head as I wiped away tears....

That anatomically impossible deal?

* He is now seeing 20/25 (with glasses)!!!

* He is seeing completely 'normal' in low contrast stuff....

* The doctor said, "I cannot even call him 'low vision' anymore....because he isn't!"

* His vision is completely in the NORMAL range in all categories!!!!!

* The doctor said that he has "no explanation" for the progress...

* We have been discharged from the Low Vision Clinic and never have to go there again!!!!!!!

I am stunned and the tears just keep coming....

For some reason God has chosen to return sight to my little guy...He has heard our cries.

I will never, EVER forget watching Parker leap down the Doernbecher hallways singing, "I'm a miracle!" to everyone who passed him by.

Praising God with all my heart!!!!!

Not Our Plan But His

Jason and I have tried to get away a few times in the last month to relax and something has come up each time to disrupt that.  We recently on a local trip had a good talk about our desire to want so badly to relax and how we feel like somehow even for a minute that will just make it all better.  The truth is it really wont.  It may be nice for the moment but it wont last.  God wants us to desire him and to need him and to go to him for the peace we desire.  A few hours after we had this really good talk I got a phone call from one of my dearest friends.  Her husband was being rushed to emergency because his white blood cell count was extremely high and his platelette count too low. Hours later we would find out that he has acute leukemia.   This couple is like family we spend holidays together and this news just rocked us.  We were on vacation close to home (Escondido) and it felt like we were another state away.  We wanted so badly to be with our dear friends.  God was telling me once again to desire him above all things, to go to him for peace, for strength, for  everything. We couldn't stay away any longer and headed back to be with our friends.  Seeing my dear friend crouched down outside her husbands hospital room was too much for me to bear.  He has always been her big rock who could handle anything.  The man who after  hard work and dedication graduated from nursing school to take care of others needs.  The head deacon of our church who would give the shirt off his back for others was in the room suffering from chest pain and high fevers.  It was difficult, not at all relaxing but there was no other place I would rather be.  This same couple held my hand as I almost lost my daughter and rejoiced with me when God healed her.  It felt so good to get off the mat and to help someone else in need. God showed himself so beautifully in the ways he worked through his people.  We could not get the Caring Bridge site up fast enough, people wanted to know where they could bring meals, cards, money, etc. people just wanted to do something.   It was a beautiful outpouring of love. It helped jason and I get a view into the way you have all felt wrapping around our family.  Geoff still has a long road ahead but the last few days have given us so much hope and encouragement for the days ahead.  He has been fever free for a few days and his numbers keep improving.  He will be transferred to UCLA soon and will eventually need a bone marrow transplant.  It's pretty amazing that we will end up at the same hospital awaiting transplants together.  We joke that we will meet in the hall for a quick hug and prayer.  Our friendship has deepened as we have a new level of understanding for one another.  We were just saying today how you feel like it just doesn't seem real.  You feel like you are watching a movie and things are gonna go back to normal.  We both acknowledge however that this is the place God has for us and this is the place he will do his biggest work.  They have certainly inspired me with their strength and faith through this hard last week.


Will you please lift up our dear friends the Dykstra Family in your prayers.  They have five young adorable children and we are praying for restored healing.  You can follow their journey at
http://www.caringbridge.org/visit/geoffdykstra/journal/6

As for Noah he will have a heart biopsy on June 17 to check the pressures in his heart and how much the disease has progressed.  We would covet your prayers.

Feeling Good

I want to thank you for all the encouraging words regarding my last post.  I hate those days when my joy has been sucked dry and I'm down and out.  So Thankful for how God quickly restores my soul and lifts me up out of the pit.  We have the most wonderful God who is so faithful in reminding us that he is here.  That he will never leave us or forsake us.  It was a really hard week where I felt just exhausted emotionally and physically.  The physical limitations get to me sometimes.  I have an amazing trainer who is so positive and he set up a game plan to help my strength.  I had stopped taking creatine(a muscle builder) for about three months I just missed a few and got out of the habit.  He urged me to restart and also encouraged me to start taking an anabolic steroid called Anavar.  He has been talking about Anavar for a year.  He said it has really helped Aids patients in regaining strength and athletes to recover faster.  I had been hesitant.  I don't like to put stuff in my body that Im not familiar with and I needed to check with my heart doctor.  The week I was down caused me to be at a place where I was willing to try anything that would help my situation.  I started on both these things last week.  I have already seen a remarkable difference especially in my pain.  I was able to do a full Costco trip without pain. Thats huge for me.  I also had a crazy idea to start riding a bike again.  The first attempt did not go over well but I was determined to keep trying.  Today I got back on the bike with my trainer and successfully rode on my own.  I'm over the moon happy and pray that I will continue to increase my strength.  I do not want to let this disease defeat me.  God is so present in those hard moments when we don't feel him near and I know he was whispering in my ear saying if only you can see what I have in store for you next week baby girl, You would wipe away those tears immediately.  He is ALWAYS working all things together for good.