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1. His/Her vision will be (severely) compromised.
If your child is a non-communicative baby and you hear something like this, you have no clue what to expect. However, from my experience with Evie, I see how well she functions even with 20/200 vision (legally blind). She has adapted well to her surroundings and uses her vision, as it is, so I will often forget that she IS legally blind until I see her bump into something, or skip over something she may be trying to read.
2. The scan/ultra sound show the kidneys are unremarkable.
Is that good? Is that bad? I don't get it. When we get a clean kidney scan I want to hear, "Everything looked great." I want to spike the ball in the end zone and do a touchdown dance. But, unremarkable is good; that means there is nothing to be seen that needs further investigation. I will often just follow up with the doctor and say, "That's good? Everything is clear?" just to calm my anxiety.
3. 90th percentile.
Woo-hoo! With my academic background, 90% was always AWESOME! Not so much with the blood pressures or the BMI (Body Mass Indicator), though.
Because of the increased risk of kidney failure in persons with WAGR/11p Deletion, we need to keep blood pressure and weight LOWER than might often be "acceptable." Evie was once in the 99th percentile for BMI, and her BP was also in the 90th percentile.
With the BMI, bumping over 99th percentile would have significantly increased her risk for developing diabetes; we had to take action to help her lose weight. And, concerning the elevated blood pressure, we needed to reduce the strain on the kidneys, so, according to our doctor at the NIH, we wanted to get her blood pressure to within the 50th percentile.
4. Kidney function is adequate/sufficient.
Pardon me? That does NOT sound good. However, because Evie had part of her kidney removed, she would have less than 100% function anyway. A person who has only one kidney will be at 50% kidney function, so it doesn't necessarily mean that kidney isn't working. 20% kidney function will start affecting the persons health, and 10-15% kidney function requires dialysis or transplant. (WebMD)
5. Elevated white blood cell counts.
I knew that when Evie was on chemo for Wilms Tumor, her white blood cell counts could drop and that would put her at risk for contracting illnesses because it would mean her immune system was suppressed. However, the first time we went in to the clinic because of a fever while she was on chemo, they reported that her white blood cell count was elevated. I was RELIEVED because I thought it meant that she still had a high immunity despite her chemo treatment. I was wrong. The elevated white blood cell count indicated that her body was FIGHTING an infection. It turned out that, at that time, Evie had pneumonia, so her white blood cells were rallying and trying to fight it off.
These are just five of the common (or most memorable for me) "ambiguous" terms that can affect a person with WAGR. I'm sure there have been other terms that have confused me, but these just stand out as the ones that really caught me off guard.
What ambiguous or confusing terms have you come across in your medical journey?