Summer, Fall and Blankets

 

Well, the boys are keeping us nice and busy (obviously since I haven't updated you since the end of June)!  Warning:  This is long!

July - Brian and I celebrated our 5th anniversary COVID style on July 11th!  A little overnight trip to Stillwater was a fun and relaxing time!  What a beautiful little town and some well needed time together!

We continued to keep Max home from daycare except for about an hour outside a couple days a week!  This was a nice time for me to run a few errands and for him to get some social interaction with his little friends!  Max and I enjoyed a lot of long walks and parks (as long as there were "no kids")!

Austin still had his therapies (physical, occupational and speech/feeding) on a weekly basis.  These remained telehealth through the Summer for precaution.  Austin was able to taper completely off all IV fluid in July, but we had to restart some normal saline as needed after about 2 weeks.  He just couldn't maintain his hydration on just his enteral feeds.

August - We started the month with a family vacation at Grandview Resort in Nisswa for a long weekend!  It was so great to be in a different space with a lot of fresh air and with amazing people!  The boys had an absolute blast and Max cried himself to sleep as we headed home after 4 fun filled days!  Austin did amazing and enjoyed his stroller rides!  We celebrated my 41st birthday and Austin's 2nd birthday in the same week!

Max started to transition back to daycare Monday - Friday due to me needing to go back to school.  The end of August was a stressful time for me and trying to advocate for an online position to keep our home safe for Austin.  Luckily, I have amazing building administration who worked tirelessly to make this happen. I'm so grateful for the opportunity to do the job I love while keeping Austin safe!  I'll stop there because it's VERY hard being a teacher right now.  We're working long hours and doing the best we can!

Austin continued to have trouble with maintaining hydration and we ended up transitioning to scheduled fluid through his IV.  Unfortunately, he continued to lose weight.  We tried going up on his enteral feeding rate, but didn't see the result we were hoping for.

September - We made the decision to restart minimal TPN for Austin as he continued to lose weight.  He did not need trace minerals or vitamins, only protein and calories.  We started out 3 days a week, but ended up back up at 5 days a week.  It was the right choice as his weight had gotten as low as 8.7 kg (he was 9.8 kg when we discontinued his TPN in June).  In early September we had our annual meeting with Rebecca Olsen at the Genetics Clinic in Children's!  She wonderful!  She just does an overall check and makes sure we are getting the referrals, labs and additional cares that a child with Down Syndrome may need!  She was very pleased with Austin's progress this year and we had checked all the boxed she would recommend (eye dr, thyroid labs, etc.).

October - Max's 4th birthday!  YAY!  And oh was it a celebration!  For the first time, Max really got into his birthday...opening gifts, cake and ice cream and all the love and attention!  In fact, he attempted to extend his birthday as long as possible!  So.Much.Fun.  A small Halloween celebration at Grandma and Call Papa's house was the perfect way to wrap up October!

Austin began to maintain his weight, but not gain, so we felt he was in a stable place to start Austin on a product called Banatrol.  It's banana flakes and used for chronic diarrhea.  He started on 1 packet a day and has slowly increased to 2 packets a day.  He has tolerated the amount of fluid through his g-tube at one time better than we could have ever expected! We have seen a slight and slow thickening of his stools, but more importantly, we've seen significant weight gain!  This means the Banatrol is slowing his gut down and allowing for more absorption.  We know that he still has some inflammation in his bowel, so we are also hoping the slower motility is helping decrease the inflammation as well!  So, drum roll please...Austin currently weights 10.2 kg (~22.5lbs)!  Austin saw Dr. Gremmels in cardiology in late October and we got wonderful news!  His ASD has closed on its own.  He still has a very small PDA that is audible with a stethoscope. He will just continue to monitor.  Right now it's too small to suggest surgery to repair it.  He will have another echocardiogram next year to keep an eye on it!

Finally, 2 years ago for the holidays we collected and donated over 100 loveys to Children's Hospital - Minneapolis!  We were so excited to be able to make such a large and impactful donation!  This year, we have decided to collect blankets for the Ronald McDonald House!  The Ronald McDonald house has provided so much respite for our family!  During Austin's initial hospitalization, Brian and I spent 8 nights in the parent rooms (similar to a small hotel room) and we have had countless meals served to us (and our family) during Austin's critical care stays.  I spoke to them today and they were so appreciative and excited we thought of them!  They said they love all sizes and the only regulation is they have to be unused!  We will drop them off at Children's during Winter Break!  Please feel free to drop off, mail or have the blankets sent to our address (819 Newberry Lane; Chaska, MN 55318)!

As we approach Thanksgiving, we have so many things to be grateful for including you, our family, our friends, our employers, our health and all the love!  We pray for health and happiness to each and everyone of you!

Love,
Tara

(Brian, Max and Austin too!)