Still waiting

April 29, 2013 at 12:41 pm 2 comments

Still waiting for the growth hormone. We have an appointment with the endocrinologist on 5/8 and he hinted we might start growth hormone at that point. I’ll believe it when I see it. The problem is that Gabe produces a ton of growth hormone but is not absorbing it which is a completely different story. What’s frustrating is they do not know why this is happening and do not feel it is related to the ARPKD!! What else is frustrating is the comments I am hearing about how cute and small he is and what a peanut he is. Yesterday a woman said he was such a peanut and I turned to her and said that is because he has a kidney disease and isn’t growing. That still didn’t faze her and she said her youngest is a peanut as well and the doctors wanted to do growth hormone on her son but they decided not to. They actually got approved and tried it but her son didn’t like it and didn’t care so they stopped! Argh!!! How long have we been trying to get growth hormone and got denied once and are still hoping!!! She even said we still had time. So I said that we might not since he could go into kidney failure one day and that would stop his growth immediately. She still just kind of smiled at me and didn’t really say much. I think most people just don’t get it. They look at him and even though he is small think he looks good and is so cute so don’t realize the severity of all of this. She made a comment that her brother in law was only 5’5″ and that was fine. And maybe it was. But who knows how tall the boys will be and when you add in all of the extra medical issues I just don’t want to miss the boat on this one!


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Icing on the cake Time flies

2 Comments Add your own

  • 1. Nikki  |  June 30, 2013 at 1:56 pm

    Hi Michele! Sorry, it has taken so long to contacy to you!! I’m sorry that it is taking so long for the growth hormones! I understand exactly how you feel! I am so tempted to be angry at people because they say, “oh my gosh! They are so tiny!” One one actually argued with me about my childrens’ age!! The kids were on growth hormones for two months last summer and had to stop. We cannot get the financial backing for growth hormones, so we aren’t able to do it. The company said that they would cover it but then came back and said that the kids are not far enough in renal failure! it was a ling and frustrating battle. It helped a little! And our Endocrinologist is waiting for any sign of failure to get us back on it.
    I really hope that you can get everything worked out!

    • 2. threepeas  |  August 1, 2013 at 6:28 pm

      Hi Nikki!! I haven’t been on here for a while 🙂 How are you? And the kids? Did I ever write and say how great it was meeting you in NYC? I hope all is well. Keep in touch.


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