More Waiting

So Thankful for my husband and his beautiful post.  Not sure how I'm suppose to follow that :)  I just wanted to give you guys more of a detailed post of where we are at now and try and answer some of your questions.  We are currently battling our insurance to get a transfer to UCLA.  We found out on friday that they need more information before they make there decision.  We really want this transfer because we have met with the director of the heart transplant center at UCLA and he has a very close relationship with Dr. Chang.  We feel very comfortable with him.  On the 20th of this month we will sit down with him and Dr. Chang  to discuss the plan of action and he will go over everything with us then.  That day can not come soon enough.  We are so grateful to Dr. Chang for arranging this meeting. He is not in our group and we technically can not switch to him until December.  So this is a huge deal.  He is such a huge blessing.  He is honestly one of the greatest doctors I have ever known.  When we saw Dr. Chang he confirmed that Noah will indeed need a heart transplant but really could not give us any details as to when.  He told us to make sure Noah did not run or do any activity that would cause his heart rate to rise.  He told us things to look for in Noah that would cause us to take him in immediately.  When we left that appointment we were able to find a quiet park to have a talk with Noah.  It was one of the hardest conversations we have had to have.  We explained to him that his heart was sick, he would need more surgeries and that he wouldn't be able to run for a long while.  We feel like that was enough information for him to take in and did not want to talk to him about the transplant yet.  We shared how we truly believe that God is using him in a big way and were encouraging him to think of the ways he already has been blessing him.  We are constantly surprised by Noah's great level of maturity and understanding in the midst of difficult circumstances.  I know I did not always respond in the same ways at 9.  Our biggest prayer is that he would cling to the Lord during this time, and really be able to see him at work through his circumstances, that his faith and love would grow even stronger.  We have a long road ahead but truly an amazing God and an amazing support all around us.  We are taking it one step at a time and making the most of everyday.

One of the questions we get asked a lot is how are you guys doing and how is Noah doing?  We have our moments where we cry and can't believe it is happening like we are reading about someone elses life. These moments don't last long because God will show us his beauty through his word or different circumstances and cause us to realize it's not about us but what he's doing through us. He really is so good at that it is amazing.  Some days we feel blessed to be able to be used by him and to be shown such great love from those around us.  Noah is doing really well.  We have had some precious time and talks.  He also has his moments of tears and frustration.  Another question we get is How can we help? This one has been a hard one for me to answer.  I love being on the other end.  We have been so grateful for the meals  after those long doctor appointments. We have been grateful for the calls, emails, texts and hugs.  Honestly prayer is a big one.  Noah has been so grateful for the times his buddies have sat out with him to do a calmer activity.   Please feel free to ask us more of your questions and we will try to answer them as best as we can.

 We are already marking things off our summer fun list.  Last night was Fancy Movie Night.  We dressed up, ate a fancy meal, watched a fun movie, danced and played Charades.  It was truly a memorable event. We look forward to many more fun summer memories.