Jax Strong

It has been a long year but thankfully with only two hospital trips outside of Ohio our boy has made it to his appointments 💕💕💕💕💕💕 he is doing great and passing with flying colors! They are now taking him off of his penicillin even if it’s one med thankfully we are down that! He will continue to take creon and dekus probably all his life! Let’s see if we can come off insulin too 💕💕💕💕💕💕 mix meal test this morning to check on islets and then our journey of 10 hours home!!!!! Thank you to everyone that follows our little dude, that prays with us, that have helped in all ways, that have called messaged, dropped by! We love you all ❤️❤️❤️❤️❤️❤️

Superhuman update:

All appointments went well. Healing perfectly, no other pains or issues. We have to work on getting his sugars where they should be this is tricky with him, he is high energy and tends to drop at dosing. We changed his numbers again and just have to keep on keeping on and get these numbers right. It was an amazing visit. Met a few new Tpiat friends today at appointments saw one our first friends. All in all little dude is doing amazing 😌😌😌😌🤟🤟🤟🤟🤟🤟 we finally arrived home just a little bit ago.

Finally touched down in Ohio! Waiting on the family to log on and play before settling to bed ❤️ check ups tomorrow

Today is the day!!!
Packed the last bit this morning. We head back to Ohio to check on our superhuman islets 😌😌😌😌😌😌 we check on his diabetes, his scars, and his medication, all new pa’s need to be written! We have a long drive ahead of us today and doctors appointments tomorrow and turning around to come home. It may take a little time for the update but i will post as soon as i can ❤️❤️❤️❤️🤟🤟🤟🤟 we love you all thank you for the continued prayers and outreach on our superhumans behalf.

Today we are glad to say our SUPERHUMAN has made it to his 9th BIRTHDAY!!!!!!! Our superhuman they told us wouldn’t make it to his 9th birthday has made it! God had bigger plans for him! We thank every one of you that have traveled this road with us this year! In 5 days will be the one year anniversary since our world came crashing down! Here we are today with a healthy, happy, gaming 9 year old!!!!

Since our last hospital visit our little superhuman has been as normal (our new normal) as physically possible. We want to wish everyone a happy new year and hope this year is a great one! JAXS 9th birthday is coming up. Anyone who would like to send cards to help us celebrate the birthday they said he wouldn’t have, our address 10 Jed court Sumter sc 29150 ❤️❤️❤️❤️❤️❤️

We were able to go home last night about 3am. He has to follow up for blood work and antibiotics today with his p*p. We are currently waiting on the nurse to call us back. As well as Ohio to call us back. He is doing better but still exhausted. Temp came down to 98.7. We are grateful for each prayer, text, call, message all of you have given! From the bottom of one tired mamas heart thank you!

Our first Tpiat fever protocol trip to Richland hospital. Jax said he wasn’t feeling well about 2pm this afternoon. No fever, no redness. About 3pm he was home and sleeping. About 5 or 530pm we attempted to wake him when we realized he was hot. His temp was 99.3. After getting him in the bath and back laying down his temp was 100.7. At this point it’s time to go to the hospital for blood work, antibiotics, and fluids. On the trip we took his temp again it was 101.7. After an hour drive and three times throwing up we made it to Richland children’s hospital. Blood work, fluids, antibiotics, zofran, covid/flu/strep test have been done. We are still waiting on blood work to come back. If all is okay he will go home and follow up with p*p for blood work and antibiotics again tomorrow. If bloodwork comes back off he will be admitted and we will go from there. Ohio has been notified and is keeping in touch as this process goes along! Prayers is all this mama can ask for!l

Our little superhuman has just received his make a wish certificate ❤️❤️❤️❤️❤️ he is over the moon. The wish is suppose to be filled in 2024! He has done very well since returning home from his six month follow up!

Mix meal test is done we will have those results later. Surgery is impressed with how everything is going and how he looks! No changes are being done right now and we will see them in the new year. We have one more appointment at 2 and we will be done for today. We will see the endocrinologist tomorrow to go over his numbers and things and we will be headed home afterwords. ❤️

We made it safe and sound! Now time for much needed rest for a long day tomorrow ❤️

We received his first card from make a wish! Since undergoing a life changing event the doctors and nurses put in Jax’s name for a wish. ❤️ he is beyond excited!