365 Days

It's officially been a year that Noah has been waiting for a new healthy heart.  To be honest we never imagined we would still be waiting.  Our life has essentially been put on hold as we wait close by for a miracle to happen.

The waiting can be unbearable at times.  It's a lot of time to sit and ponder what exactly has to unfold in order for our son to sustain life.  The only thing that get us through, is knowing that God does his best work in the waiting.

Waiting is hard.  It requires patient endurance, faith, strength, steadfast hope, and willing obedience.  I fall short of most of these on a daily basis.  I'm thankful for how the Lord has protected Noah this far and really have no reason to doubt his plan.

Jason and I marvel at the ways God is using this story.  In the last month I have had two separate strangers come to our house to purchase  shirts and bracelets.  They have either seen the news story or seen someone wearing a shirt and have a desire to support our family.

God is at work here in ways that we may never even know about.  This is what helps us get through the wait.  This is what helps us get up in the morning and go about our day.  We hope and pray that a heart would come soon.  Until then pray that we would persevere and wait with confidence knowing that God is doing his best work in the waiting.



Noah had an appointment yesterday and everything looks the same.  Nothing to be concerned about.  We are always grateful for uneventful appointments.

UCLA Update

I wanted to update you all on Noah's last doctors appointment.  On Tuesday we made the trip out to UCLA for lab draws and a visit to the Transplant Clinic. Noah has to have his blood drawn every month to make sure there are no signs of liver damage.  One of the medications he has to take can be hard on the liver.  After labs we met with the transplant team.  Noah has gained some weight and has grown some.  We are all happy about this..  His EKG  did not show any change from his last visit.  We will discuss this with Dr. Chang when we see him on the 18th.  They would like to see Noah every six weeks.  We were told that they got a call for a heart for Noah but felt like it was not perfect enough so they passed it up.  This brought me a lot of comfort to know that they want to make sure it is perfect.  It is hard to wait but we want it to be the best so we have the best possible outcome for him.  We saw the transplant dentist and he needs to have a baby tooth pulled and they would like him to get he flu shot. Noah broke down as he was talking to the social worker.  She was talking about him not being able to go to petting zoo's and handle animals.   I explained to him that he could be around animals just not touch them because his body would be immuno compromised.  He said it is just so much change.  He misses his old teacher Mrs. Barneson and some of his friends that are not in his co-op this year.  He is sad for the things he won't be able to do.  It was good for him to get a lot of this out but it broke my heart at the same time. I wish I could take away his sadness.  Please pray for him.  All in all it was good to see the team and they are all hoping just as we are that transplant will be soon.

This same morning I woke up with some pain in my left hip. I occasionally will get this pain in the evening after I have done too much walking.  When we got to UCLA it was difficult for me to walk and I had a bad fall smack on the tile floor.  I was in lots of pain and could not stand steady.  The next day we had it x-rayed.  Praise the Lord nothing was fractured but it was very inflamed.  I have been given pain meds and told to stay off of it until I follow up next week.  Never a dull moment around here.  We do our best to keep it exciting.  I feel like a dope.  I have been very stubborn in not wanting to get AFO feet braces.  They have recommended them for over a year and a half and I just felt like since I only fall every once in a while I could get away with it. I know stubborn right?   If my son can take 10-15 medications, go through a heart transplant and have to endure a mountain of change.  I can certainly handle this.

Noah's doctors are also setting up all the necessary paperwork for us to go through full genome sequencing.  This is basically a blood test that will give them a full gene panel.  They will be able to see what gene mutations Noah and I have and help pinpoint what genetic mutation is causing both of our diseases.  I'm very relieved to get this done.  My hope is it will give us  some helpful information.

 Please pray that we would be able to get this done soon and that we would get some answers. Please continue to pray that we would walk through these hard things joyfully knowing that God uses these difficulties so that the works of God can be displayed. Pray for Noah that we can help him process this well.  We appreciate all of you so much.