Merry Christmas and Happy New Year!

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 beneficial for him.  He still gets his g-tube feedings 24 hour a day and he's currently at 42mL/hr.  We continue to increase the rate as he tolerates it.  Our goal is 1 mL, 1-2 times/week.  This has been slow and we even had to go backwards in November due to Austin not tolerating the volume.  He had increased vomiting and gagging.  Not fun for anyone.  Prayers we can keep advancing forward and that hurdle is behind us!

As for activity, he's getting stronger every week!  He has PT and OT weekly and they are constantly changing up his exercises and goals.  My amazing dad made him a stander that he uses about 20 minutes each day.  This allows him to use muscles that he wouldn't use just sitting on the floor playing.  Austin actually loves it!  He stands up tall and plays.  When you take him out, he holds on!  He continues to work on both fine and large motor skills.  His fine motor skills are pretty good and he absolutely loves playing with his toys!

Next week, on Tuesday, Austin will have his 8th surgery at Children's.  We made the decision mid-December to remove the PICC line in his arm and put a new Broviac IV in his chest.  When we put in the PICC in September, we were hoping he would only need it for 2-3 months and based on his current assessments, he will need TPN/lipids support for a few more months.  The Broviac is safer and comes with less risk of infection and getting accidentally pulled out.  Since Austin will have to go to OR for this procedure, we decided to go ahead and have Dr. Kreykes do his incisional hernia repair, and for GI to do an endoscopy and a sigmoidoscopy.  All small procedures that we can accomplish under one anesthesia.  The endo and sigmoidoscopy are really just to take a look at his esophagus and his colon for any inflammation.  It would not be at all surprising to see some ulcers or lesions due to his short bowel syndrome and his stools being diarrhea most of the time.  This may provide us some answers or some direction on how we can improve Austin's watery stools.  He's short bowel syndrome so nothing currently is alarming, just always want to do what's best for him!

Max is doing amazing and is starting to embrace being a big brother (at times)!  He absolutely loved Christmas this year and it was so much fun seeing the twinkle in his eyes!  He also continues to grow and has surpassed 40 pounds!  He keeps us on our toes with his 3 year old sass!

I will update you after Austin's surgery on Tuesday.  Happy New Year to you and your families!  May 2020 bring you happiness and cheer!

Love and Hugs,
Brian and Tara
Max and Austin