Keeping up with Four Joneses!

Over the past few weeks, we've been enjoying our time outdoors and a Minnesota summer! Mr. Austin has a few updates, mostly great news! His last night of TPN (IV nutrition) was June 12 after a week of 1/2 calories.  Since then he's just gotten normal saline (NS-IV fluid without all the nutrition) we've decreased his NS weekly (first week was 450mL/day, last week was 250mL/day and this week he will only get 100mL/day.  He has tolerated the decreases well so far.  We have to watch is wet diapers, saliva in his mouth and signs of fatigue.  This would indicate possible dehydration.  He seems to be more thirsty and has been drinking more water than he has in over a year (his most has been 50mL in one day-about 1 2/3 ounces so baby steps)! He reached his goal for his enteral feeding rate of 60mL/hour last week!  This may change as the only bad news we have is Austin has been loosing weight since stopping the TPN.  He was approximately 9.8kg the first week in...

Hello from the Joneses!  Summer has officially started (that means I had my last day of school year 2019-20 yesterday and oh what a relief it was!  Very challenging 4th quarter led into an anti-climactic last few days of school.  However, we all survived and we still have a lot of hope remaining!  Brian continues to work from home full time.  We are thankful for United Health Group and their flexibility and consideration of Austin's high risk status for Covid-19. Max is doing amazing!  He has accomplished so much since we've all been home (mid March).  He is potty trained, sleeps through the night (again) and continues to love learning and sharing all his new vocabulary with us!  I can't remember if I've mentioned it before, but it's worth mentioning again.  Before the quarantine, Max would see Austin for only a few hours a day (between when he got home from daycare and Austin's bedtime).  Since quarantine, he has learned to play with Au...