Family Magazine

Make Like a Nail and Press On.

By Maddixfamily31 @inthemomentprod

The last week and a half has been really frustrating for various reasons but we must keep on, keepin' on, right? 
As one of my favorite lines from “The Great American Trailer Park Musical,”--“You have to make like a nail and press on.” I'm pressing on and I'm trying to do it in the most positive manner I can and tell myself everything will be OK. It may not be an easy ride but as long as we press on things will eventually work themselves out. Well that and pray everyday for God's guidance on what we need to do to always be a happy, healthy, family, including figuring out what is best for Noah. 
Noah had an ultrasound done on Monday to look further at his kidney's. There hadn't been anything abnormal in the blood tests taken so far, however, because we know, Noah has a mutated gene and he could possibly have Lowe, which is known for kidney problems, best to start early in catching anything that hasn't been seen with the other tests that have already been done. I appreciate the fact that they did want to go ahead and do this, just in case. I've been used to so much waiting that I figured they wouldn't do further testing on his kidney's until he was diagnosed. 
Today we got the some of the results from the ultrasound and it does look like he is releasing too much calcium in his urine. The nephrologist needed to study it further but right now that's all, however, that could always change. If he has Lowe, he would be getting rid of too much protein and potassium as well and that could still happen. It's just not happening yet. This is all coming from the nephrologist, whom I really like so far. We are scheduled to come back in a month to check his kidney's again to see if anything is different. By that time, we should have at least done the test for Lowe but I don't know if we'll have the diagnosis by the time we see the nephrologist again. Either way, even the nephrologist is leaning toward Lowe as the diagnosis. Before I left, I was told the “special kit” has arrived (to test Noah for Lowe) except for one component that has to be sent from Baylor. We should be getting the call to do the test next week. 
Even though I suspect Noah has Lowe, it's still going to hard to hear if it's confirmed. No parent wants to hear something is wrong with their child and there is really not much you can do about it, except help give them the best medical care, extreme amounts of love, and support for all that lies ahead. 
On a side note, we did see the neurologist last week and he didn't think it was necessary for Noah to have a helmet to fix the flatness on the left, back side of his head. It's not that bad or noticeable and there is room for the brain to grow. So, we're all thankful for some good news! 
Noah did have his occupational therapy today as well and for the first time, drank from a straw. He loved doing it too! We couldn't tell if he was really thirsty or just loving this new thing he could do. It was very cute to watch him try something new for the first time.
I'm also trying to teach him some sign language on a few things to help understand him until he can talk to us. I don't know if it's just coincidence but a few times yesterday I made the sign for eat and he somewhat did it back when I asked if he wanted to eat. I tried a couple times today and he didn't do it. So, I'm not sure. But I'll keep trying. 
Keeping myself in the moment (with a little caffeine to help),

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