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

Thank you!

We would truly like to give a big Thank you to some amazing aunties, uncles and playmates that Kyle has!

We're truly blessed and extremely thankful for everything!

Thank you for being part of our lives and being the best ever!

Happy 7 Months!!!

Happy 7 Months to our little tiger!

He is doing well lately...eating, rolling, almost sitting, jumping, teething, chatting up a storm! His next appointment is in about 3 weeks with his liver team.

Kyle is currently still on pregestimil. We had some left over and didn't want to waste it. Plus insurance sent some over. BTW, does anyone know if we can get retro back for the formula we brought prior to them approving it? I tried calling and it was an automatic machine talking to me, it's so annoying! He averages about 20-21ozs a day of 30 calories per fluid oz and has 1-2 solid feedings a day. He's super slick, he will not eat any plain oatmeal or rice cereal, we need to mix it with apple sauce. ha!

We are slowly started taking him out more. Mostly outdoors, however this past weekend we had brunch with our dear friend Kimmie and her son indoors, wasn't so bad. Kyle was just a little distracted with so much going on. He's starting to recognize places and people, so it takes him a minute to warm up. But once he does he's all smiles. He's such a happy baby. Hopefully in do time we can work up the courage to take him out out more often and enjoy the weather.

Here are some pics of our little tiger...

our little tiger boy

he doesn't really like to get spoon fed ...rather get it straight from the bowl

Feeding tube or not?

Throughout the week we've been guessing and saying...he didn't gain any weight; "Kyle, you must drink more formula."  It all came down to the weigh in today at his pediatrician's office. 
We've been very frustrated with the way he's been feeding because he averages about 17-22 oz per day.  To us, that didn't seem like it will be sufficient enough to stay away from the feeding tube.  2 weeks ago, his weight was 10 lbs 14 oz.  We needed him to at least be over 11 lbs.  Carrying him felt like he was getting lighter.  Feeding him formula, he will constantly get distracted and maybe play with it. 

So we go in and the weighing begins.  Before he is put on the scale, the wife and I started to just blurt some numbers out.  Funny thing was that we both blurted out numbers over 11.  11lbs 2 oz and 11 lbs 6 oz.  So the weighing begins and weight was 11lbs 6 oz.  Exactly the date of his birthday.  Pediatrician comes in and goes, I want him to go on the feeding tube.  It is best for him because the last month when he was weighed, he was 10 lbs 12 oz.  Pediatrician says that he isn't growing as rapidly as he should and this is the most crucial point in development.  So the pediatrician asks us, what the liver team at Mt. Sinai say?  Since my wife was not there last time, I said the following "feeding tube will need to be inserted if he is not thriving."  Then I go, 2 weeks ago he weight 10 lbs 14 oz at the liver clinic.  Pediatrician looks at me and told me to repeat the weight again and how long ago...I repeat "10 lbs 14 oz".  She counts and determines how much of a weight gain he had in 2 weeks and that's at least half a pound.  So the pediatrican goes..."they might give him a chance."  Which is better than what she originally said.  So finally we ended the visit with the pediatrician saying something like this.  Kyle looks remarkable and alert.  His stomach feels soft, she can't feel his liver as the liver at one point was enlarged and he is not jaundiced anymore.  We will report his weight on Tuesday and we'll still keep our fingers crossed...but at least one hurdle passed.

another milestone...Kyle playing in his saucer

No more pregestimil...

What a way to start off a weekend!!! I got a voice mail today - Kyle is NO LONGER REQUIRED to be on his special formula! How amazing is that! Doctor feels that because his bilirubin has been going down he no longer needs the special formula ...aka pregestimil...aka that-stinky-thing. No more spending massive amount of money on just a can...but go figure when I got that voice mail 5 minutes later the insurance calls and tells me that insurance can cover the special formula. HELLO! where were they like a few months back???? So we're going to finish off what we have left of his formula at home before going back to regular one. The only thing is we have to still feed him 30 calories ounces until further notice. (does anyone know if similiac powder still has the recall? ) Hopefully we get a great reading on his weight tomorrow at the doctors so he will not need a feeding tube (we'll update tomorrow after his appointment).


Just hangin' out with his sister's pillow pet



we wake up to this smile every morning

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