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May 2021....it's about to get CrAZy!

I hope this finds everyone well!  So much going on, I'm just not sure where to start!  I'll start with Austin, followed by Max, new house, upcoming move and finally our Virtual Walk for Amazing plans!

Austin is doing so wonderful!  This boy brings so much joy and determination.  It's surgery week and I can honestly say I'm excited for this one (of course not that he has to be put under again) and we're very hopeful the outcomes will make it worth it!  Line up the providers...Austin is having his central line removed by Dr. Kreykes.  This Broviac has been in place since September 2019.  His last infusion of TPN was November 2020 and his last fluid (normal saline) bolus was January of 2021!  It's time!  We were hesitant until about a month ago when he suddenly started gaining weight and feeling great!  Austin also had some routine labs a few weeks ago to check for the indication of inflammation.  His calprotectin was NORMAL!  This was amazing news!  I almost jumped out of bed when I saw the results on the Children's portal.  He did still test positive for Occult stool which may indicate some micro bleeding.  So, along with the line being removed, Dr. Kevan is going to do an endoscopy and colonoscopy.  She's going to look at the lining of his digestive tract and also take a peek at his anastomosis site (place where they reconnected his small and large intestines back in 2019).  Lastly, although he passed his most recent hearing tests, Dr. Meyer would like to have an ABR completed while he's under anesthesia.  Click here for an explanation of the ABR, if you are interested!  Thursday is the big day.  We're praying for good outcomes!


Max has become an awesome big brother and a thoughtful 4.5 year old!  He loves being outside, playing with friends, playing with Jurassic World dinosaurs and watching "dinosaur toy shows" on the iPad.  Seriously, don't ask...I can't handle it!  He has a new love of the Minnesota Children's Museum and has a goal of learning how to ride his big boy bike this summer!

Max is also VERY excited for our big move this summer!  We signed our purchase agreement in August 2020, they dug the hold in late January 2021 and we are finally to the point where progress is significant enough that we can get excited!  We will list our current house on 5/20 and the next 3 weeks are going to be wild getting ready for the listing!  We love this house and are excited to determine the next owners!  Our closing date on the new house will be mid-July!



Lastly, tomorrow is the start of this years Virtual Walk for Amazing!  We are so blessed to have raised over $1,500 this year for T21 Team Austin! THANK YOU to everyone who has already donated or played squares, so much fun!  Due to the event being virtual again this year, we will have a goal to do something active as a family everyday for the next two weeks!

I will update again after Austin's surgery on Thursday!  Stay well!  Hugs!

Tara
(Brian, Max and Austin too)

Comments

  1. Can’t imagine how great it will be to get rid of the tubing? And fantastic news that Austin is gaining weight! Praying for a good outcome with the surgery and the hearing test ( I went to the link to learn more…interesting!). Moving is always a blast ( ugh) but the new house is super fun. You should be able to sell in this market, great timing. Max is so cute and I bet Austin really loves him to pieces.

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