Bi-annual check up

Kyle had his bi-annual check up at Mt. Sinai yesterday! Little man did great ... Ok maybe not cause he was upset at first (see photos below). 

He weighs 29.2 lbs--- way above the 50th percentile now!!!! And is 34 inches tall. 

His labs were results came back great - nothing change from the last time- which is amazing! So proud of our little man!!! 

December Check-Up at Mt Sinai

It's been 4 months since his last check up at Mt Sinai...
He weighed in at 27 lbs ...gained 5 lbs!
and is about the same height!

This time around he didn't throw much of a fit when they drew his blood. He pouted and cried a little. Kyle was a brave little boy!

no more daily meds :)

Mr. Piggie

Kyle loves to eat! Where there is food is where you'll find Kyle! Pictures below proves it! Lol!

He had his check-up with his liver team two weeks ago. It was his NP's last time seeing him before she leaves there. We're going to miss her. She was amazing and always answered out questions and was so reachable. Of course Kyle cried his eyes out but they said he looks good!
Overall visit went well... Except for the drawing blood part! It took about 30 minutes to get blood drawn! He wouldn't let anyone touch him. It took 2 people to get it and one of us to hold him (see below pix.)

His results came back as well. His bilirubin numbers are normal! We love that. His liver numbers are stable. Which is great news too! He is heading the direction we want him to be heading. When April rolls around we can get him off his antibiotics! Can't wait! One less meds in his system.

15 months check up

Kyle is 20lbs 4ozs... And still a little on the short 28inches. (he's really not on the charts yet though) And he's doing great!

This Friday is his appointment with the liver team, hope all goes well there. And today we got a letter from his NP who is leaving to go somewhere else. She was absolutely the best and got all our questions answered. hopefully the new one will be just as nice and fast.

And a very happy belated birthday to his sister and grandma!!!

Some pics of Kyle below...

Happy Doctors!

Kyle had two doctor appointments today, one round of drawing blood and one round of flu shot, even with all that my lil man is still happy as ever. He weighed in at 17lbs 2 ozs. Impressive weight gain since the last time for them! They're extremely happy with how well he's maintaining the weight gain. I can't say much about his height as they both came in at different numbers, but I can say he is def not a tall one. Guess the wishing for him to get the recessive genes didn't work out.

At his liver appointment, they were so happy on how he looks and acting. Even the surgeon stopped by and said hi. His doctor took Kyle all around the office and was just telling everyone that Kyle was her lil one and how great he looked. Hopefully his blood results are stable and nothing fishy comes up. The best part is they decided that instead of seeing him every other month, they are going to see him every 4 now. I'm extremely happy about that. It just means he's going at the right track.

At his pediatrician, his doc was happy with him as well, especially with his developmental skills. The last time we saw he was there she was concerned about it all. But now she's not worried at all. Overall, it was a good day at the doctors. Extremely proud of how my lil man is doing!!

Will update pics shortly.

Next up on Kyle's adventure...Boo at the Zoo with his other stooges and company!

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



Birth weight double!!!

Finally Kyle is double his birth weight!!! He's 14lbs 7ozs as of today at his monthly check up with his liver team. (still a little short though) Even though he's a little off his developing skills, the np thinks he looks great. Liver is sill enlarged but that's ok cause liver is a remarkable organ and it may go back to normal size as he gets bigger. He's come a long way!
As for the physical therapy part, he's been evaluated by the pt (thx to our wonderful friend!!!), special Ed teacher and nutritionist - results are that he's borderline, so city may not approve for the IE program. He's being evaluated by the OT today. Even though he may not qualify for city funded IE program, he's got some amazing aunties that will help us out. Like his np said he's young and will catch up.

I'll post pics later.

Almost there...

Kyle went for his 6 months check up (yup he's 2 months behind on his shots). He gained 8ozs from a week ago, today he's at 12lbs 12ozs - barely reaching the 3rd percent tile...ALMOST THERE though! She's happy that he's gaining weight though so thats good. He still has an enlarged liver and spleen- we hope it goes down in time. The doc felt he's got low muscle tone and would like for him to get some physical therapy, since he's really not supporting himself sitting and pulling himself up..however Kyle LOVES to jump. Hopefully it'll help with his developing skills once he starts getting it. He got two shots today... His last 2 before he turns a year old. Wow! How time flies! A year old in 4 months!!

Happy 4th everyone!

after his 2 shots

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

30 Calories ...

Kyle had his 2 weeks followup -- no luck on the weight gain. He hasn't even tipped the 11lbs mark. Kyle is only 10lbs 15ozs! Our main focus is now his nutrition. He got pushed to 30 calories for his formula. Doc said solids are a snack - poor booboo is not going to like it as he loves his solids! We have two weeks for him to gain weight or we'll have to do a feeding tube. So do not want that! Anyone has suggestions on how to fatten up our little man?

Good news is his bilirubin dropped! YAY! It's 1.6 over 1 (1 being the direct!!! )

sitting on his own waiting for the doctor to see him

Happy 6 Months ...

How time flies! Can't believe our little tiger boy is 6 months old today! He may be a little underweight but that doesn't stop him from developing skills like normal 6 months old. He's very close to sitting on his for a good amount of period. He's responding to his name and he laughs so loud now, especially when his sister plays with him. He started on oatmeal yesterday, so far he's loving it maybe more than rice cereal. He's drinking just about the same amount of formula. I hope he's gaining weight! Going to start him on solids tomorrow! That's going to be so much fun! Next Friday is his followup at the liver outpatient clinic! Hoping that his numbers are good and he's gaining weight!

no itchy, no scratchy

Weight: 11lbs 5 ozs –  had all his gear all diapers and bib included – LOL! - so that's totally a cheat weight

We had an appointment today with the Mt Sinai allergy team for the hives that developed during his last admission ... (it was referred by docs that think he's allergic to something!). Since he was on Benadryl while he was admitted, they couldn’t test to see what he was allergic to until today or if was allergic to anything because of the hives he had. The doctors were nice – asked A LOT of questions that I was thankful that his Auntie Kimmie was there too to help us answer them. I couldn’t stay the whole time – Kimmie told me he was pricked 5 times! My brave boy didn’t cry much! It did seem like a VERY long appointment, but not going to blame them as they are doing their job. End result was what we want to hear, he isn’t allergic to penicillin - so it's probably from fighting the infection that he had! The best part of my little boy’s day was seeing his Auntie Kimmie. Never seen such a big smile on him the moment he saw her! So cute!

And this past weekend was the first time we took Kyle out of the house – not like he went far and all out…he just went to grandmas, that is better than staying at home!

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!