Updates on Nolan

We finally have a toddlin’ toddler. Nolan was proclaimed a walker by his PT yesterday so he has graduated to seeing her only once a month now (wait, is that a reward or punishment?!). He has been walking for about two weeks now and is starting to bring his hands down from “high guard” to by his sides; It looks a bit funny because he doesn’t have the natural swing to his arms yet, they stay right next to his body. He already does really well outside on uneven ground and can step over roots and such with relative ease. I believe the next project is steps, thankfully we don’t have any here and will have to make a special trip to Mimi and Dindin’s to practice.

We will be watching his speech development over the next month and decide if he needs speech therapy when his PT and case manager return in November. According to them often kids can concentrate on only one new skill at a time so now that he can walk he may forge ahead on speaking. If not, we have long time family friend who is a speech therapist who I think Nolan will love. We are still not worried about him talking and believe it will come in Nolan time but don’t mind having him go to therapy either. Really, of all the things we have had to worry about this seems minor.

I will put up some photos from our recent trip to the mountains. Nolan went to the Carl Sandburg park where he met, fed and ate with some goats (mmmm, hay!) We all had a good time seeing the family and hope to see them again soon.

Nolan has had several infections which were thought to be UTIs though the last sample they took was “contaminated” so it wasn’t clear what was going on. Because UTIs are so rare in boys his Pediatrician wanted to have some tests done to see if he was having reflux. There are cases where the urine refluxes all the way back up to the kidneys and can damage them which can require surgery.

The first test was a simple ultrasound which went fairly smoothly. The next test was a series of x-rays plus a test where they catheterized him and filled his bladder to see the path of the urine. This test was traumatic for everyone. Two nurses tried to cath him which had him wailing and us ready to walk out. They were able to call his Urologist (Dr Bukowski) down who talked to us about why he thought the test was necessary and then was able to put the catheter in in a matter of seconds. After that things were better and the test was over fairly quickly.

It looks like he is having a very small amount of reflux which Dr Bukowski said is nothing to be concerned about. He also said there are no strictures from the surgery and he didn’t see any signs of a fistula which is a common occurrence after surgery to fix severe cases of hypospadias. This was a nice surprise as we have been expecting Nolan to need surgery this fall ever since his last surgery. The Dr said a fistula can occur at any point so it doesn’t mean Nolan is fully off the hook but it makes this fall and winter a much more pleasant time.

His pediatrician seemed more concerned with the small reflux because of Nolan’s UTI history so we had another conversation with Dr Bukowski. He had another look at Nolan’s x-rays and was clearly unconcerned about the amount of reflux, he said it was within normal range. He also said that the tests we had used to diagnose Nolan’s UTIs were not reliable, that maybe one in 10,000 were uncontaminated so that, yes, he had some kind of infection but the source was unknown. There are two ways to test for a UTI, we have been “baging” him where you put a bag over all the necessary parts and capture the urine to test it. The other choice is to use a catheter which is apparently the only way to get a clean sample but is hard to do, painful and traumatic for all of us. So. Next time…? let us hope there is no next time.

In any case we are looking at a fall with no known surgery, cooling temperatures and maybe if we are lucky a bit of snow. Sounds great!