I wanted to write an update on Joshua's health, since we have some really good things to report and also a couple prayer requests. First, the good things:
- Oral feeding is going well! We had our ups and downs during the summer, as our routine was constantly changing and for some reason J seemed to get sick every 3 weeks or so. But he ate well enough to maintain his weight through the summer, which is really exciting and a huge step towards us being able to take the g-button out. He has also learned to take his daily medications by mouth (or to put it more accurately, i have learned how to grind them up and hide them in his yogurt). So now we will see if he continues to eat well this fall, and hope to take the G-button out around Christmas.
- J's speech continues to improve. Last summer, J struggled to put together 2 word sentences, which was considered to be a significant delay. This summer, he regularly strings together 5+ word sentences and he's doing much more interactive and spontaneous talking. He hasn't had his speech evaluated recently, but it seems like he's making great progress. One great thing about the road trip was that he got lots of cousin time in both Reno and Lincoln, as well as lots of new experiences, and I think both of those things were helpful for his speech.
Prayer requests:
- Upcoming surgery - J has surgery scheduled for this Friday to get ear tubes placed and to get some dental work done. This should be a simple set of procedures and they are not admitting him, but surgery is always a little scary. Also, this is the first time that he will be aware of what's going on as we take him in for surgery, so I would especially appreciate prayers for peace and calm for J as he goes back to the OR and as he recovers from anesthesia.
- Genetics appointment - In mid-September, we're taking J in for a genetics consult. This appointment is always nerve-wracking because they can deliver information that has life-long implications. It will be interesting to see how that appointment goes because apparently East Coast geneticists and West Coast geneticists do things differently. West Coast geneticists, which is the only type J has seen so far, diagnose based primarily on physical examination, family history, etc. East Coast geneticists are (supposedly) much more likely to do blood and DNA testing. [By the way, as a total sidebar, it is SHOCKING how differently *really important* medical procedures are handled based on where your child was born. Since J was treated at University of Utah as an infant, he got a jaw distraction to help with his breathing. If he would have been treated in Virginia, he would have been trached. Most of his specialists doctors out here have never seen a PRS child that wasn't trached. We are extremely glad that J was born in a place where jaw distraction was offered as a treatment option rather than going straight for the trach. End sidebar.] So it will be interesting to see if the East Coast geneticists want to do a bunch of testing since minimal blood testing was done out in Utah.
Other than that, life is back to normal around here. J starts school after Labor Day and we are going to attempt potty training before then, so wish me luck!
