No, No, No...and Yes!

Kyle's new thing ..."no, no, no" with his finger and finally learning how to say yes! 

Update on his blood results from his follow-up on Monday after his hospital stay last week -- everything thing is trending down (bili# is back to back down to Normal range!), just as the doctors hoped for! In another words, Mr. Kyle's episode last week was ...VIRAL!

Happy Results!

We're so proud of our lil tiger! His numbers came back from his blood work last week and they're amazing! His bilirubin count is .3 over .1 -- NORMAL! we love that name! Liver enzymes number according to daddio is half of what it was last time. Stable! We like stable! And best part...we can take him off of his vitamins. Even better...next appointment is 4 months from last week! Woohoo! Go lil tiger!!


We were told he need to start feeding himself...so the next day grandma gave him a piece of fruits...and sure enough he ate it!  Yummy!! :)

Hurricane Kyle

Hurricane Irene is approaching, but while everyone in the city is prepping for her our little Hurricane Kyle sent us to the emergency room last night. Yesterday, he had his liver check up. He weighed in at 16lbs and 26ins (still in the 3^rd percentile – but doctor is still happy with it). He got his blood drawn (which we found out the results were pretty much the same as last months). He was doing great in the morning, he was his happy usual self. Then towards the afternoon, he started acting strange. He wasn’t eating, the solids that he consumed for breakfast came back up. It was scary. All he wanted to do was sleep. He looked so uncomfortable. When we arrive home, daddy tried feeding him cereal and formula. All that came back up as well. We saw he looked extra tired too. Finally, we called it in and they told us to make a trip in so he can be seen. We went to the ER, took forever to get seen only to be kicked out with them saying it’s nothing because OF COURSE at the hospital Kyle was jumping and laughing. The one good thing about the trip was finding out his blood results a little earlier than usual. Today is another day, he’s doing better but still looks exhausted and not eating as much. We’re hoping this is just a bug that will go away fast. He’s also teething…which doesn’t make it easy at all.

Some other news-  he also started OT (2x a month) and PT (1x a week)...and he no longer needs monthly visit, it is now bi-monthly! YAY!!!

Here are some photos of our little man:

Kyle gets a hair cut

Playing peek-a-boo

At CP Zoo - scared of the big polar big



Go Kyle Go!!!

We got his blood work back! Go Kyle Go! His bilirubin is .4 over .2!! Exactly where the doctors want it...to stay going down and in fact it dropped from his last month's result! But the best part ...his liver enzymes are HALF of what they were last month! Go Kyle Go!!! So extremly proud of our little man!

And another note...he's sitting on his own now...straight instead of leaning forward. At times he'll flop over, but it's alot better than what he did last week. He still needs PT and OT, hopefully that will get approved by city soon so he can catch up to speed with his other friends.

Here are some pics that we didn't get to post last week:

Kyle sitting upright



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

picc line out...

Yay!! After about almost a month and a few rounds of antibiotics, his picc line was finally taken out by the home nurse this afternoon. His lab results were good enough that the liver team and ID team felt it was time for the line to come out so it would not cause anymore infection. It's such a big relief for all of us and if Kyle can talk he'll probably say "FINALLY! FREEDOM!". He can get a real bath too! YAY! So far the little man is doing well with the exception of a low grade fever of  like 99-100 because of his shots-- hopefully it goes away soon. Even with a little fever - he's laughing like he normall does, eating more, pooping and smiling!

We want to say Thank you all for those who've been there since day one for all your support and prayers! We are truly lucky to have you all in our lives!


YAY! My picc line is out!




Kyle with his sister in the morning



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!