Three years post kasai

Today marks 3 years post kasai for Kyle!! He's an amazing little boy and is doing great! We're are so blessed he's in our lives!

Two years post surgery

Today marks 2 years since kyle's kasai. He's doing great and getting stronger and stronger. He finally has more teeth growing in.

One year later...

A year ago Kyle had his kasai done... A year later he's growing stronger and stronger! So proud of him! He's our trooper.

Success....

Our little man is now at 12lbs 4ozs! The greatest news today ever is no feeding tube! Yay! And no more alternating between pregestimil and similiac. Doc wants him straight on similac. And to have a diet like a regular baby would. She's so happy on his progress. His liver is still a little enlarged and so is his spleen, so they'll have to monitor his platelets more now. She said for the first time since he had his surgery that the kasai is a success!! Yay! Today was one of the shortest amount of time we were there. I walked out not asking 50 questions cause she said I should just be happy with all the good news. So I didn't ask... I figured why worry myself more with so many things if he's doing well right? We won't know his blood results until next week (drawing blood was a hard one this time! Strong boy!) - once we know we'll be updating... For now we are going to enjoy the weekend with family as one of his aunts is getting married!!! Congrats to his Yee-Ma!!!

on our way to check up

the first post ...

This seems to be the best way to update our family and friends on Kyle! And also our way to look back on how much he's improving.

The short story of how it all began - Kyle was diagnosed with biliary atresia at 2 months (8 weeks) - and has his kasai at 65 days old (1/11/11) - he was doing great up until 8 weeks post kasai! he was 4 months old (exactly!) when he was first admitted with a high fever and they suggested and treated that as a case of cholangitis. A week after that stay, he spiked up a fever along with rashes - we went back in for the 2nd time - that time was the worst. He was in shock pretty much - so doctors called it "the real thing" that time around - his blood culture came back with gram-negative and it was later determined to be e.coli. He was treated for a week at the hospital and went home with a PICC line to be treated on IV. Then literally the next day after his follow up appointment that day - he spiked a fever and was admitted for the 3rd time. Again it was e. coli! We stayed for another week - and went home to get treated again on the PICC line.

Today is the first day off his antibiotics - hopefully no more bacteria. It was also his followup at Mt. Sinai and his over due well visit.  His current weight at both doctors is 10lbs 12ozs - extremely underweight - but my little superhero has been thru a lot. He is however growing in length- 25 inches... That's an inch more a week ago.
We are waiting for his blood results to come back and if the numbers are good they'll take the Picc line out. Hopefully sooner than later since it can be a resource for bacteria.

His liver ped even said if his numbers are approving at his next follow up and weight goes up- he may be able to go back on his regular formula! Yay!!! Crossing fingers that it will happen as the current formula is expensive! They encouraged baby food as well- however his ped said not yet since he wouldn't get as much calories from it. She told us to do all types of grain first. So onto oatmeal next week!!!

My superhero is such a happy baby! He didn't cry when he got 3 tubes of blood drawn but he screamed like crazy when he received his shots! Haha! Go figure that one out! Hopefully  he's on the road to recovery! No more fevers! No more infections!!!! That's all I'm asking for!

**update on his blood results - NP said doctor LOVES his results! his bilirubin direct is 1.7! wohoo! and i believe total is 2.7


Kyle on his way to his follow up!