At a recent followup visit with River's Urologist in Boston, we were relieved to learn that his kidneys look good. No damage from the residual urine he holds in his bladder, likely because he hasn't had any urinary tract infections. We'll continue to catheterize his bladder each night, and may have to increase to the morning time as well as he grows.
Seizures were gone for a bit, and now are back. Thankfully they're short laughing seizures but as one doc put it "seizures beget seizures" so we're not waiting around for them to get worse. We're in touch with the doctor, playing with his Lamictal dose. So far they seem to be holding steady at 6-8/day lasting only 15-30 seconds. Stay tuned.
River continues to be on a complicated regimen of laxatives and medications to help with motility. He gets weighed and measured monthly and has been slowly losing weight over the last few months. At first we attributed it to an occasional virus (he usually has to go on pedialyte for a couple days) but now we think it's because he's more active and burning more calories than he's able to take in. The dilemma becomes how do we get more calories in without overtaxing his delicate digestive system. It seems like we have a fairly reliable system going on now. Throw in a more concentrated formula or more volume and we lose that balance. Hopefully the "experts" will guide us through this.
On a more fun note, River got an ipad! I can't wait to share pictures and/or video with you. Until then check out what some other kiddos are doing with their ipads. www.babieswithipads.blogspot.com This is where I got the idea. Frances Hicks helped make it possible.
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