Eli did in fact continue to struggle with pee. We ended up at the surgeons office first thing Monday morning with a sore, swollen boy. He of course peed at the office. He remained swollen and struggled to pee alot over the next two days but by wednesday it was back to normal...mostlly.
Now we are left struggling with the diarrhea, lack of pee, bordering on dehydration, temp control issues, and the heat rash is back in full force. He is also really off balance and struggling to keep himself up and steady. He has lost 1 1/2 lbs this week with all of his heat and hydration issues. This isn't something that we can let go until the 9th when we meet with his medically complex doctor. So I will be calling Monday so we can get a plan in place. Bob and I have discussed our thoughts, and we know what our home nurses think, so we will just have to see what the doctors thoughts are.
Eli also met with the new eye doctor this last week. She says that his lenses and glasses need changed and she also wants him patched for 4 hrs a day/7 days a week. We will begin working on the new glasses this next week and then will begin patching.
The olders are good. Busy as ever. Emily has been working hard on her violin lessons and we are really hearing the improvements. Her teacher was really happy. Jace has been busy outside most of the time. Benjamin has been busy with his respite worker, mostly swimming every day, although he has gone to the jumpy place, zoo, and arcade a few times. Ariana has been playing with all of her new barbies as well as snagging the IPad every chance she gets.
This next week Eli has an appt with the orthopedic surgeon. We haven't seen her in 6 months and i'm looking forward to her thougths now that Eli is walking and that he has his new braces.
I will update more soon.