FABULOUS NEWS!

Hi,

Yesterday, Heidi and I took Jules for a Long Long day at Children's hospital.

First, we had an echo. Jules did not enjoy being forced to lie on his side for twenty minutes while the ultrasound tech worked on his chest. But, Heidi and I took turns holding him down while he cried and sometimes he got distracted by a video they had on in the room. Mostly, it sucked though.

Then, jules got a really grouchy and awful lab tech who took blood from his finger and he was very sad.

After these lovely tests, we got to have some fun with Keren and OT. Jules got to practice with a sippy cup and throw yogurt around, so he was pretty happy. He showed off one of his new words -- Challah and had an all around good time, which was much needed at that point.

Then, we went to meet with the nutritionist. Jules had not gained much weight (just made it to 18.7 pounds) so we decided to go up to more significantly fortified food, taking him to 40 calories an ounce. I'm not sure if that is the end of the line of calorie density or whether we can try something else if it doesn't work, so I'm dearly hoping this new concoction does the trick!

Finally, we met with the pulmonologist. He had much good news to give us. here it is:

1. The prelim results of the echo were normal, showing no stress to julian's heart from being off oxygen and his prelim blood work was good as well. But, we have to wait for the radiologist and the rest of the labs to come back to confirm this.

2. Given that, we can do a two night trial without the oxygen concentrator that blows oxygen into his crib, (where we wake up every two hours and test to see if jules has enough oxygen saturation) and if it looks good, we can get rid of the machine.

3. If it looks good, they will bring in another type of equipment to measure him all night long and do a print out or record to a chip, so they can prove he is done with oxygen for good.

4. If all that works, we will start cutting the other diuretics he is on in half and then eliminating them, working toward only having him on the one medicine for his reflux.

5. Given how great Julian looks with his walking, no hospitalizations so far this winter, and coming off oxygen, we got the best news of all -- At the END of April we will break our year-long hibernation and isolation. Jules will get to LEAVE the house!!!

Yay!

I am so happy.

We will be able to leave the house as a family, go to restaurants, go to parties together, have people come visit and gigi can have play dates with friends. It seems to good to be true. I am so excited.

And we can also take him on a flight at the end of April to Scott's sister merrie's baby boy's bris in New York!

When we told Gigi the good news that jules could fly on airplanes now, she said, "Aloha!" and had visions of Hawaii dancing in her head. We had promised her that when the day came he got off oxygen, we would all go to Hawaii, so I am going to plan that trip too! I am so very happy.

We do have to take Jules to a special flight simulator test to make sure he can handle changes in cabin pressure. If he can't they will give him special oxygen just for the duration of the flight.

And we will have to find a hotel near merrie's place in new york that will give us a big fridge to hold all his weird liquid food stuffs. But, that is it and we can go!

Finally, because of this, Jules will get to meet other children his age for the first time at a twice a week preschool at his special Boyer Clinic where his physical therapist works. He will start preschool that goes for two hours 2x a week at the end of April.

I am so excited for him! And for us!

Joy