Keeping up with Four Joneses!

Merry Christmas and Happy New Year from the Joneses!  As always, Santa was very good to us again this year.  We are blessed to have so many amazing family and friends.  We are reminded of this in various ways all year round, but especially during the holiday season!  We thank you, we love you and we appreciate you! The good news...nothing crazy has happened in the past 2 months.  The bad news....I haven't updated  in the past 2 months!  I will make an attempt to fill you in.  Austin has been continuing to reach milestones at his pace.  It took a little longer than we had hoped, but he's growing again!  On Monday, he was 8.9kg (approx. 19 lbs & 4 oz)!  We are so happy for this growth!  He continues to need the support of TPN/lipids (IV nutrition) at night.  We start him at 7:30pm and he's done at 7:30am.  Being attached to IV's at night has minimal impact on his (and our) daily activities and has been so benef...

Well, once again, it's been awhile and there is too much to cover everything so I will do my best to summarize.  I know it's time for an update when people start asking so thank you for the reminders! Since being home, we've had our ups and downs.  Mostly ups so that is good!  PHS (Pediatric Home Services) IV nurse Lynn and the home care nurses are back in our home and providing wonderful care for Austin.  Over the next few weeks we are hoping to get into a more regular schedule but for right now, they are all doing a great job of filling in and getting routines and orders going again! As for Austin's progress, there is NO DOUBT that we made the right decision to restart his TPN/lipids.  Austin is so happy, he has gained so much strength and has made so much progress with his physical therapy and occupational therapy.  He is now sitting up on his own to play with his toys, rolling over consecutive rolls and is more willing to put his feet on the floo...

Happy Sunday!  A little update on our tough little man. On Friday, doctors decided they wanted to take Austin to the operating room for his PICC placement.  We were hoping to avoid another round of anesthesia, but his safety comes first!  Since he had vomited on Thursday and he has Downs Syndrome, they felt better putting him out for the placement.  He did great, but woke up very sad.  He doesn't like the way his throat feels when they remove the breathing tube.  They had me go back to PACU (post anesthesia) to comfort him and we were soon on our way back to his inpatient room.  He did great on Friday evening and we restarted his feeds slowly.  He got up to 40ml/hr by Saturday noon and has tolerated it great!  40ml/hr will be his rate for a week or two until we get everything balanced out and then we will begin going up 1-2 ml/week with a goal of 53ml/hr.  Of course this goal could change when he begins gaining weight. With the ne...