briefly back home again

we are having a heat wave here in seattle. It is 97 today and getting hotter tomorrow.

Did you know babies with lung disease can't breathe when it is over 90 and humid?

So, after a visit to the pediatrician's office this morning, we decided that living without air conditioning is too risky for Jules.

We left our quarters for the past four months for three nights in our previously renovated downstairs. I am having flashbacks of my c-section which was the last time I lived down here because I wasn't able to climb stairs.

Gigi is in one guest room. Jules/joy/scott in the other.

And we are handwashing a lot of bottles because our kitchenette does not have a dishwasher.

Here is the good news. It is 97 outside, but 72 in here. We can swaddle jules in blankets again! Yay!

Jules weighed in at 15 pounds 7 ounces today. Yay! He gained 17 grams a day again. Go Jules Go!

We are holding steady at a 30% reduced lasix dose and preparing for thursday, august 6th's big pulmonary clinic day where we will meet with the team of doctors, the nutritionist, nurses, and of course occupational therapist Keren to discuss julian's progress. Guess what is not on the table?

G-tube surgery! We are ALL so delighted not to be worried about that this week.

Goodnight from 36th avenue.

Joy

horrible night

Last night was the worst night we have had since jules stopped having night nurses.

Thank Goodness gigi was sleeping over at our hold house with miriam, bleys and nick.

Scott had to get up at 4:30am to make a flight to california. Jules refused to go to bed until 10pm and then woke up on and off until 3:30am when he chose to be wide awake and ready to party until six thirty AM! Scott kissed me goodbye and headed for the airport while I tried to coax Jules to sleep and freaked out because he kept pulling his oxygen prongs out and I couldn't tell if he was breathing or not. It was awful.

I am so exhausted and trying to come down from the anxiety with the oxygen. In my fatigue, I also kicked over the oxygen tank and freaked out. If the top snaps off, the tank turns into a torpedo and can break through the wall. I was wigging out imagining it ramming into the condo next door!

Jules also threw up his meds last night and this morning, so I am seriously worried about thursday mornings lab tests!

Joy

Nice day

Jules is having fun because his aunt Miriam, uncle Bleys, and cousin Nick are in town and spoiling him with lots of attention. He is loving Nick's guitar playing and having a great time.

We are watching him closely as he undergoes his first lasix weaning trial, down 30% for this week. He has labs on Thursday morning to check and see if removing the medicine has had an adverse impact on his lungs.

He is cute, cuddly, snuggly, and awesome.

Joy

Good News

Jules had a great day today.

Firstly, he slept a four hour stretch last night. It was SO nice for us.

Then, he went to see his new pediatrician. His previous doctor just left to do AIDS work in Tanzania.

His new doctor told us the following:

Jules has a head in the 40th percentile.

His weight is the 1oth.

His length is still 2ft. He is not on the growth chart and is even a little worse off then the last check-in.

However, since he gained 17 GRAMS a day for the past two weeks, we are out of G Tube stress land and can be pretty happy that Jules seems to have dodged that bullet! YAY YAY YAY!!!!!

Go Jules! He is so amazing.

If in the next year or so, jules does not make progress on length, he will go to a special endocrinologist to see what to do.

But, although most kids take two years to grow well, some kids take until they are as old as ten to make length progress.

She thought Jules was advanced in his motor skills for his corrected age. This is because he chose to move like a baboon on top of the examining table, resting on his palms and standing up on his legs in one of his crawling attempts. It was pretty cute and funny.

She thought he looked great and ventured to say we might just be out of the Scary Times.

She wants to run a weaning lasix trial next week with a blood test after seven days to see if he has major set backs.

And that's the story!

Joy

sleepless in seattle

last night he was up every twenty minutes from one forty until four am.

Rough Nites

This is the fourth night of no nursing care.

Our insurance policy finished the benefit just in time for the week heidi went on vacation.
So, Scott has taken the week off of work and we are trying to figure out what to do about the fact that Jules wakes up every two hours all night long. We are exhausted and struggling to figure out how to help him sleep through the night.

But, we can't let him cry when he wakes up because he just vomits when he cries and he needs the calories too much to risk losing food.

Our physical therapist had some ideas to try that we will attempt tonight, but we are so sleepy and quite foggy and absent minded during the day.

Goodnight,

Joy

Always on the fence

Jules is doing great in my opinion.

He gained 14.4 grams a day!

Our pediatrician thought that bought us merely another two weeks dodging the G tube surgery. The nutritionist thought it was awesome.

I feel strongly that since he is on an upward eating trajectory, we are out of the G tube woods. But, I'm ont the doctor.
Speaking of upward trajectories, two weeks ago, he was eating days of 500ccs. Last week, 600cc days were the norm. And he started out this week in the 700s!

Keren, are you reading this?? I know you are on vacation, but you might do a little dance if you read this. Drum roll please....

He just drank 800ccs!!!!! It is amazing. I know certain people will be shocked in a good way.

I was a little startled myself when I added up the numbers four times to make sure I wasn't crazy.

He is a super star!!!!!!!!!!!!!!!!!

Now, he could just turn all that eating into body mass and get up to 15grams a day so the doctors stopped being so freaked out and scaring me all the time, we would be sitting pretty.

But, I am very pleased about his progress.

On a final note, he is down to .1 liters of oxygen 24/7. I ONLY HAVE 1 MACHINE to take care of and he only has one set of tubes on his face. It is heaven!!

And only six medications.

Goodnight,

Joy

Amazing Eating

Jules has had two amazing days, pulling in 720 and then 760 today! I am so hopeful for tomorrow morning's pediatrician visit.

And he crawled backward this morning, which was pretty awesome in front of Kathy, his physical therapist through the State. He also clapped his hands for her, correctly held some one inch blocks, and did some cool sitting up, yet still playing with toys manoevers. Jules is doing really well and it is sooooooooooooooo nice to see.

Joy

good eating

Jules moved up a bottle size this weekend, doing his best eating yet.

At one sitting, he ate 150 ccs of food and regularly consumed 130.

Our car warned us three weekends in a row that it wasn't feeling well,

so it went to the mechanic all day saturday. Now it has new break pads,

rotors, a new coolant system, some new oily stuff, and feels a lot better.

We visited our house for the first time to see insulation and dry wall.

That was really nice and we are excited to be moving to the latter half

of the project and looking forward to moving back in the fall.

Jules has a big weigh in on wed. at the pediatrician. We hope he has been

holding on to his calories and gaining enough to keep that NG tube OUT!

I am even fantasizing about returning all the NG equipment. I really really

want to throw the NG pump backpack off the roof at Kartik's, but I

am containing myself.

Joy

doing well

Jules is eating his food goals, 7 bottles a day, one half hour each time, plus three solid food feedings. Just the bottles alone take us 3 1/2 hours of time each day!

But, we are very hopeful that he is growing. He will get a weigh -in next week.

Development wise, he is sitting up unassisted for long periods of time.

We LOVE having No NG tube. Love it. Love it. Love it.

Unfortunately, he is having a rough time with oxygen weaning and desats when he sleeps. So, he will be on oxygen for awhile.

Joy