not growing

We took jules for a weight check up today.
He has not grown since Nov. 10th.

Still 18 pounds.

The pediatrician said she would give us two more weeks.

We discussed everything from G tube surgery again to a new even higher caloric drink that is on the market.

I got very upset. I hope his brain is getting enough food.

And I'm trying to focus on the positive, like how well he seems to be doing off oxygen and how nice it is to not see tubing all over his face. And how great that he is off lasix and off the O2.

But, I'm praying that he will grow.

Joy

gigi's 5th birthday & no o2 at night& chanukah

We celebrated Chanukah and then in the middle of that we had Gigi's birthday party (since her birthday is on Christmas). It was a Become-A-Fairy (tm) birthday party that Joy designed.

Also, Jules has been off any O2 for the last 3 days. That means he's sleeping on room air. I wake up a few times a night to check his O2 saturation levels, and everything looks ok.

From gigi's 5th birthday and chanukah 2009

From gigi's 5th birthday and chanukah 2009

updates

The good news is that for my 35th birthday week, Jules gave me two great presents:

1. He took his first steps.

2. He went off oxygen during the daytime. This means he gets to wear real boy clothes instead of the pajamas he wore for 14 months straight. The joy of being able to see him wear pants and a shirt that can be pulled over his head is amazing. We are all delighted. He looks so cute in real clothes! And it is so great to be able to really see his face all day.

He did forget to grow for a couple of months, so we had a bunch of appointments to jump on that and he is now on a new food brew. Pediasure, plus his thickening agent, etc.... It has 30 calories an ounce instead of 28, so we hope that helps him grow again. He is still weighing in at 18 pounds.

He will be one year "corrected" on Christmas.

He has developmental assessments from the high risk infant clinic the first week of january. He gets to meet with a psychologist, a developmental pediatrician, etc...

Happy Chanukah!

Joy