Been awhile

I know it's been awhile since I last posted, and I cant even begin to remember where we left off.  Our life has changed once again but in a good way.  Haley had her life changing heart surgery on May 3.  It was a very scary surgery.  It was a grueling 11 hours of not being able to see her.  She came back to the room NOT on ecmo, and she was awful looking.  She had an open chest for 5 days and during that time we had ECMO nurses just in case.  She really flew through that surgery like a rockstar.  The toughest part was getting her off her breathing tube due to the fact that she had been intubated for over a month.  She finally was succesfully extubated around the first part of June.  We celebrated Haley's first birthday in the PICU and it was very special because all of her nurses came and celebrated her life with us.  It is  HUGE milestone to make it to your first birthday if you are a heart baby.  July 1 we were able to move to the 4th floor (the regular cardiac floor) and on July 19th Haley was able to come home after being in the hospital for the last six months straight.  Jeremy likes to say we were in the hospital pretty much the whole year because we basically were.  haley only had been home a week here, 2 days here, a week there.  We made it  6 whole weeks of being at home and we have enjoyed it.  We had a minor setback last week (she ended up in the hospital due to puffiness and a virus cold).  Thankfully she was only in there for 4 days and we are back home.  Now Jeremy and i are trying to really pray about what it is we are suppose to do.  We were financially blessed this last year and were able to stay with Haley the whole time.  Now that reality is back we need to find some income.  The church only gives us a limited income and we need more money to pay bills and just live.  We are not excessive spenders, but food, gas and basic bills are very costly.  We both feel that we can not get a full time job due to the fact we have to travel to KC every 2 weeks for appointments, and haley is still fragile enough to be put back in the hospital at any time.  we need jobs that we can do from home.  I am feeling the stress from it.  our bills are starting to pile up and I dont want to beg for money.  UGH we both are unsure of what the future holds for us here in Kingman, for the Church, for Haley in general and what we are supposed to be doing.  I wish God would give us a life plan for us to follow, but He doesnt.  The scripture that has been our theme is "be still and Know that I am God.  So that's what I must do.