great week for jules

tough week for us.

Jules had a great week. he laughed on his six month technical age birthday (yesterday 4/10) and I caught it on camera. He laughed this weekend some more and it was so awesome. Scott will post the laughing soon.  I was getting really worried because Julian's corrected age is 3 1/2 months and I was wondering where his laughs were.

Scott, gigi, and I had a tough week. We moved on Monday to Kartik's condo because the dust at our construction site was too dangerous for Jules. Moving so quickly, combined with trying to do passover, and Gigi having no school, and trying to get to all of julian's doctor's appointments, was pretty intense. We are exhausted. We made many trips back and forth between the houses. There are boxes everywhere. thank you so much to kartik for letting us move in and live in his house during our remodel.

Luckily, gigi is sleeping over at meema and grampop's hotel (they came for passover) and scott and I are just taking care of Julian by ourselves. This is a good thing because he pulled his NG tube out tonight and it is a lot easier to handle re-insertion procedure without worrying about gigi.

We just got internet access a few minutes ago at kartik's condo, so this is our first attempt posting to the blog. I hope you all enjoy watching the video of julian laughing as much as we do. He doesn't have the lung capacity to laugh as long or as deeply as he might like, but he gets the job done.

This week, Julian has a swallow study on monday. This is where they watch on a live x-ray type thing called a flo-oscopy or something like that as he drinks from a bottle and they can see if he is aspirating. He also has physical therapy three times and a pediatrician visit as well as a whole day at pulmonary clinic. And gigi has no school. I am trying to figure out what to do to handle all of julian's appointments. should I bring gigi with us and have her watch him get shots and stuff? I don't know. My stress level is pretty high about it. 

Okay, goodnight.

Love,

Joy