Labs and audiology appointment

We had Ben's cardiology and kidney appointment last month. At that kidney appointment they determined that his kidney disease was improving a lot! Well, they decided to let him do a challenge of sorts. His medicine that he is on to help his kidneys is called Cytra-2. He takes this every day at 2:30. The kidney doctors told us to have him stop taking it for a week and then do labs to determine if he still needed it. They were very hopeful that he could come off of it because his labs looked so good and his kidney ultrasound looked great as well.

 Well, we did those labs as well as a prograf lab on Wednesday. They got back to Joe with the results rather quickly. They like his levels for this kidney lab to be around 24. But they have always settled for 22 or 23 because every time they try to increase his Cytra, he has massive GI issues. Well, when he did this Cytra challenge, his numbers dropped to 18. Which is just not acceptable at all. So, we had to go back on Cytra that day. But, apparently Kidney had not told Cardiology what we were doing. So, when they called Joe with the Prograf levels, they told him, "His Prograf numbers look great. No change there. But, his kidney levels have gone down. Something is going on with his kidney to where his kidney disease is worsening." So Joe had to explain what we were doing, and then they understood that, no, nothing was getting worse. We just needed to go back on the meds :)

Yesterday, August 28, Ben also had his Audiology exam. The Audiologist asked if we have any concerns about his hearing. Which, no, no concerns there. He hears me opening a candy wrapper from 2 rooms away and comes running :) I think he did pretty well for being 2 years old and it being a 45 minute exam of them wanting him to sit still quietly and wait for noises to pop up. Towards the end he was just done and kept telling me "mommy, I go now. I'm all done." A few of the louder noises scared him and he tried to get away and told me "mommy, I want you!" Which means "I'm scared." He was sitting on my lap, so there was no where else for him to go. The tech said that he passed for the most part, but, there were a few where she really couldn't get a good screening. Well, yeah, he's 2. And it's taking quiet a while. But, then the part where they put things in his ear was perfect. He passed that and they said his ear tubes are all the way open. Which is good.

Next appointment for Ben is PT next week, then the dentist, hematology and pulmonology. Lots to update for September :)

Back to school with his sisters!