Mr. Piggie Part 2

A video of Kyle snatching food from my plate ...
this was after his doctors appointment at Mt. Sinai

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.

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



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

Eat, Eat, Eat!!!!

One more week for little Kyle to gain some weight. He's been doing pretty well with the 30 calories, in fact yesterday he started on drinking more than his usual daily intake. Hope that's a good sign and he continues with eating more and more and gains weight! Kyle has been more vocal then before lately, he loves to chat with his sister. It's too cute when they're playing together. He also started rolling all over the place.

Lately, we've been battling with the stupid medicine company! argh! It's so frustrating. Not once have I got a correct answer and each time I talk to a rep they give me different information from what the other reps has told me. Bottom line...why am I paying for insurance to have to pay for medicine?



Kyle at 6 months 3 weeks old



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!