10,373 and 1,093

So, as is customary this time of year, I start compiling numbers for tax season.  One of the things that I started recording last year was mileage that we traveled due to a medical reason.  I was shocked to see that we traveled 10,373 miles with almost all of that going to and from Phoenix Children's Hospital.  We could have driven across the country to the White House via Jacksonville, Florida!! No wonder we did not put a lot into savings last year!  We also were looking and noticed that Zach (and therefore us) spent around 200 days in the hospital.

We have been in the process of figuring out where to have Zacharys hand surgery done. Our orthopedic doctor recommended two different doctor teams, one in Rochester and the other in Dallas. He preferred Dallas, so of course we decided to pursue Dallas first. The hospital in Dallas is called Scottish Rite Children's Hospital. They are donation based and the team hand picks their cases they take. We submitted the necessary paperwork and had an interview.  The team looked at Zachary's medical files (or more likely skimmed every 100 pages or so).  Then we waited...  

Are they going to be nervous due to Zachary's medical complexity? 

Will they have a qualified anesthesiologist to handle Zachary's heart? 

If they do accept the case, how will we get over there?

Did we explain our goal for this surgery enough?  

We finally received a call on Friday.  They have accepted Zachary's case!!!!! WooHoo!!!  Wow, ok, this is really happening!

Now to schedule the consultation.  The gal proceeds to ask when I would like to schedule. Hahaha, I was kinda like, well, we have one major surgery to get thru in March but how about May? We continued to chat and decided to schedule the consultation for May 14th. 

Now our questions are these:

How often do we have to go back for follow ups post operation? 

How long will we be in Dallas there for the surgery? 

Who will watch Micah and Josiah during those times? 

How will we pay for the travel, hotel, food and all the unknown expenses that will come up?

Do we fly? Do we drive? 

The drive is 1.093 miles so about 15hrs one way. So yes, it can be done in one day, but that makes for a long day for Zachary.  But to fly can be upwards of $300 per person each time we will have to go back. God has provided everything we have needed up to this point. He does not always reveal His plan BUT He gives us the grace for today.  That is enough. 

Psalms 119:105-107 says it this way:

Your word is a lamp to my feet

and a light to my path.

I have sworn an oath and confirmed it,

to keep your righteous rules.

I am severely afflicted;

give me life, O Lord, according to your word!

God is giving us a lamp or light for today.  We do not get to know the entire path.  I think that is God's grace.   

We have  setup a gofundme account to help with all the expenses. We will not be able to drive every time due to time constraints.  We also just do not have the funds to pay for the travel expenses.  We would be so blessed to have support for our little man. The docs were right, since Zachary was born, it has been really hard.  Is that a valid excuse to give up?  Just because the path ahead will be treacherous and painstakingly slow, do you turn back? No!

gofundme.com/rememberedbygod

JJ Heller put out this album specifically to NICU families.  A very encouraging album reminding us of the good in this life.  Check it out!

jjheller.bandcamp.com

Before he had to get his NJ tube back in last week. He isn't very excited. 

After the NJ tube was placed.