The Latest News

Jakari's been doing pretty well over the past month. We got him switched to a different tube feeding and made some small medication changes. Everything's been working really well.

At our visit to the GI doctor at Duke last week, we got the great word that he's right where he belongs on the height/weight charts. This wasn't really news to us-he's getting heavy!! Right about 25 pounds, and strong as a little bull. But it's still good to hear it from the doctors... there are still more surgeries to go and having him big and strong is going to be really helpful when it comes time for recovery.


One of the biggest recent advances Jakari's made has been in sign language. Speech has been working on signs with him for a while but it seems like in just the past few weeks he's caught on and is stringing them in sentences to let you know what he wants. His vocabulary is getting bigger all the time and he's picking up on new signs and ideas all the time. And even with the trach and the pressure from the vent, he manages to get sounds (with quite a bit of volume!!) out. It's more difficult to talk with the trach and vent, but he sings and hums and says a few words quite well.


In the near future we're also switching homecare companies. Almost all the current nurses are moving to the new company, so there will be great continuity of care and no major shakeups in that regard. The schedule is pretty good and solid these days. Mostly, the changes we're hoping for will all be on an administrative level, and just help to keep everything running smoothly.

As far as a car goes, we're still looking and hoping that something affordable comes along. In the meantime, we make do for appointments with a borrowed car that has enough room to get everything there and back. Hopefully it won't be too long before we've got a new one of our own. If there's any way you can help, we sure would appreciate it.

And that's what's the latest news!!