One of a Kind

For the second day in a row a doctor told me today, "I've never seen anything like it!"




Now there is no question that my Riley is extremely special! Both of my girls are. She is absolutely one of a kind! But from a medical perspective, sometimes being one of a kind is good news and sometimes it is really, really not so good news.

Yesterday Riley had what we thought was her pre surgical appointment at her ENTs, Dr Duncan. A while back we attended a feeding conference and the feeding specialist thought Riley was tongue tied and needed to have surgery to cut her frenulum back. I was all geared up for surgery at the beginning of the summer. But the good news (depending on how you look at it) is that Riley is not tongue tied but just has a really short tongue. Not having surgery sounds great to me. But on the other hand, we were hoping that surgery would solve alot of her feeding issues. Back to the drawing board on that one.




Then today Riley and I took the 45 mile trip back to Texas Children's for her important renal clinic visit to address her high blood pressure. Dr Riley met with several other renal specialists this morning about Riley at the urging of Dr Jeewa, her cardiologist. They looked at all the blood work we did yesterday, the blood work and kidney ultrasound that we did in February and her historical blood pressures. Dr Riley's highly educated response was "we've never seen anything like it." And for the second day in a row of hearing that, my heart sank.

Riley's kidneys are just really small. That is concerning. For some reason they are producing a protein that they shouldn't which is causing her high blood pressure. The two major possibilities of causes of this is...one, that the kidney cell structure itself just didn't develop correctly, or fully develop. And two, that the blood vessels that go to the kidneys are narrowed and so the kidneys have not received enough blood flow. In the next couple of weeks we will be doing more testing to figure out which it is. That includes going home with a blood pressure machine that will take her blood pressure every 15 mins for a 24 hour period. And an angiogram which will be a sedated CAT scan with dye contrast being sent to her kidneys. Neither of these will be easy or fun for both Riley and I.




The fantastic news is that right now her kidney function is good. Not surprisingly, little Riley has figured out a way to compensate for her little kidneys. The bad news is the doctors best guess is that Riley will eventually develop kidney disease. Treatment for that can result in dialysis and (here we go again) a transplant. And of course since we've had to think about transplants before, we know there is big questions on wether Riley would ever qualify for a transplant because of her disabilities.

But that is far down the road, IF it even ever comes to that. And it is just an educated guess that it will. My heart continually reminds me that Riley has been proving doctors wrong for a very long time! It's kind of what she does. She is a miracle and has been the blessed recipient of so many miracles up until now. So what's one more?

But I gotta say, despite trying to focus on that, I am more then discouraged tonight. Now we have one more damaged organ, one more specialist to see, and possibly more diagnosis to add to Riley's long list. That means more doctors visits, more tests, more pokes, more tears and more fear and pain for my baby! They want her to have blood drawn every 3 months and a kidney ultrasound and clinic visit every 6. How much can I ask of this sweet girl?

I have been reviewing my darling princess over in my head all afternoon. In its simplest terms, from a medical perspective I think...small head, brain with too many "bumps", weak lungs, enlarged heart, small kidneys, seizures, non verbal, weak eater, uncooperative muscles. But from a Riley perspective I think...the greatest smile I've ever seen, the best laugh I've ever heard, full of life and love, and a spirit that's so close to heaven.

Now that's the part I'm going to focus on as I go to bed tonight. It will help me get through the other part! And I know it is constantly the part that she focuses on. Once again she's an example to me! And if she could talk, she would probably say..."Mommy have faith! What's one more miracle?"


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