Terrible Twos, or Threes?

Good news is that Landon is a typical 3 year old in many ways. The bad news is that Landon is a typical 3 year old, kidding! Kind of... You know how they say that the terrible twos have nothing on the 3s. I didn't believe it. Landon was always so laid back so I thought we may be in the clear. Not so much! I think he is giving up his nap. He did not nap 3 days this week. It used to not be a big problem if he missed his nap. But now, when he doesn't nap he is incredibly wound up and does not listen or follow direction unless he being occupied. And if not given the attention he desires, he does things that he knows will get a reaction from us. It's exhausting! He spends a good bit of time in time out and losing privileges/toys etc.. It's only a phase, I hope! I have been making more of an effort to spend quality time with him and doing more structured activities rather than playing cars for 15 minutes here and there throughout the day. Pinterest has given me ideas for some new activities! We are still working out some issues with Landon starting Procysbi (the 12 hour medication).. He has had blood work twice recently- last week and the week before. The first week he had it was when he was regularly vomiting and last week he had a bad cold.. The first blood draw indicated that he creatinine level went from .03 to .045. This number had consistently been .03 for a while now and to jump up is not a good thing. His nephrologist thought it may be a result of being a bit dehydrated from vomiting. People with Cystinosis can easily get dehydrated. I should mention that creatinine is one measure of kidney functioning so my stomach dropped a bit when she said that. So we had his blood drawn again and added a test that more accurately measures kidney functioning. I took him back for his second blood draw and added the cystine test to see how high his cystine level is and another test to measure kidney functioning. I learned several days later that his creatinine went from .045 the week before to .040 so down a bit but not as low, and as good, as it had been. His bicarbonate level (measures some of his electrolytes) was a bit low but he hasn't had his dose of medicine for this so not something to be concerned about.. The other kidney functioning test (I think it was called the NER) showed a drop from 101 to 64 (the numbers may be off a little because its coming from memory). At 101, his nephrologist reported that his kidneys function just as anyone of his age. She reassured me that although a drop, not for the better, it was not a huge drop and something we should just keep am eye on. Because he was sick, she reported feeling ok about the results. I am praying that this is the case and that when he has a blood draw again in September that the numbers will look like Landon's again. We still do not have the results of the cystine test but if that number doesn't look okay then there is a good chance that I'm going to ask to stop Procysbi and put him back on Cystagon. I have nothing negative to say about the drug because it has provided a much better quality of life for so many in the Cystinosis community but I cannot keep him on a drug if I know that another was working better for him. I'm really jumping ahead in even discussing this but it's my nature. I need to get things fixed if there is even such a thing. The last thing I want to mention is that our 3rd annual Halloween event is scheduled for Nov 2nd. E-mail me for more details!!! LaurenLHartz@gmail.com