Hello from the Joneses! First and foremost, thank you to all of you who have checked in on us! We are doing well and are facing the same challenges most of you are facing on a daily basis. We are all home each and everyday, dividing and conquering. Max has adjusted very well and has (for the most part) been a good office mate. He's almost 3 1/2 now and continues to be a little sponge when it comes to learning. His vocabulary cracks us up on a daily basis! Our plan is to keep him home until after my spring break (4/6) to minimize contact with others. In a nutshell, we are in a bubble right now! Austin continues to do well and has had the least impact of all of us. We are grateful that his nurses and PHS have committed to staying healthy and diligent in this fight agains COVID-19. This allows them to safely enter and exit our home daily during the work week.
On 3/9, Austin had an appointment with Dr. Kevan. She is so happy with his recent progress! No major changes as we seem to be on the correct treatment plan! Over the past couple weeks we have been able to taper and discontinue one of his stomach medications. We started cyproheptadine when Austin was having a considerable amount of vomiting. He doesn't have a need for it any longer. We continue to be able to increase his feeding tube rate by 1mL almost weekly. He's currently at 48mL/hr! This is fabulous! He's up to 9.23kg (about 20lb 5oz.)! Lastly, we have to talk poops! Ha! We collected a stool sample earlier in the week. Dr. Kevan wanted an occult blood and calprotectin level. His occult blood came back positive and his calprotectin level came back improved but not normal. So, what this tells us (without going back in for another colonoscopy) is the lesions on his small bowel are improving, but still there. His calprotectin level (a marker for inflammation) was in the 300's in September, the 400's in December and were 234 this week! High normal would be around 60. Due to the findings, Dr. Kevan increased his budesonide in his g-tube. We're hoping this continues to heal up those little lesions and he continues to keep feeling better and better!
Speaking of feeling better, the day we need to put the safety gates back up is drawing closer and closer! He is back to enjoying tummy time and has been scooting backwards. He can also go from his tummy to sitting! Huge feat for the little guy! All his therapies are on hold for now due to COVID-19, but we are going to pilot teletherapy with his physical therapist on Friday! I'm very excited for this and so thankful for the opportunity!
It's a long ways off and hopefully it gets to happen, the Children's of Minnesota Walk for Amazing is May 30th. Since it's so far off, I will just share the link to our team page! Feel free to join us!
Stay Healthy!
Love and Hugs,
Tara, Brian, Max and Austin
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