Archive for May, 2010

Laughed at me

I wasted three hours of my time this morning with a doctor who actually laughed at me two times. I took Gabe to an endocronologist because I am concerned he isn’t gaining weight or growing as well as he should. So we started talking about his weight, which was down to 29 lbs today, and I said I was concerned because that is the 1st percentile for weight. I then said no one has been able to tell me how much Gabe’s kidneys weigh since they are adult size and over 11 cm each. So even if they each weigh 2 lbs each it is putting Gabe’s actual weight down under the charts. And the doctor laughed at this. She said no one had ever asked her that. She then went on to tell me that I really need to fatten Gabe up and not to worry about nutrition because it seems like he likes healthy foods. So I need to give him things like nutella, bagels with butter, potato bread, doritos, cheetos, ice cream……. Um….duh! I could have figured all of that out on my own without wasting 3 hours of my time and paying a $35 copay. ARGH!!!!!! This makes me so angry. I have been trying to “fatten” Gabe up for the last year and a half doing it with healthy fats. I don’t think the way to go is with these unhealthy foods. She also said since I’m only 5’1″ and Matt is 5’8″ that Gabe in the 15th percentile for height is fine even though Max is in the 25th percentile and Nate who doesn’t have ARPKD is in the 50th percentile. I realize we are not giants but I don’t want my boys to be short either. I just want what’s best for them and clearly seeing this endocronologist is not what’s best for any of us! She also said Matt really needs to see an endocronogologist since a pheochromacytoma can occur anywhere in your body, not necessarily in the adrenal glands. So more to worry about.

We leave for DC and the study at the NIH on Saturday. Hopefully we will receive promising news on all fronts!

May 20, 2010 at 5:28 pm Leave a comment

Silly Sayings

This one is sad to me and not so silly, but here goes:

We were talking the other day about Theo, our new dog, and how he pees in the house a lot. Nate asked when he will be potty trained. Gabe then looked at me and said “when will I be potty trained?”. Technically Gabe is potty trained but is constantly wet. It’s almost as if he is leaking out all day long. I told him he is trained but then he asked why he is always wet and when he won’t be like that. It made me sad. I told him it’s because his kidneys are different and that is why he is always wet and that it is not his fault. Ugh. Just one of the many issues surrounding this disease that is so frustrating.

May 15, 2010 at 9:25 pm Leave a comment

I can’t make this stuff up

You know how I always saying we are jinxed. Well, we got this new puppy about four weeks ago and he seems to pee a lot. I took him to the vet yesterday and she tested his urine and what do you know…..he is not concentrating his urine.  I’ve heard that before! How ironic that Max and Gabe also do not concentrate their urine. Now, it could just be he is drinking too much. So now we have to collect a first morning urine sample and have that tested and go from there. Hmmmm…….. could our life be any more ironic or crazy???

May 4, 2010 at 3:29 pm Leave a comment


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