Archive for April, 2013

Still waiting

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!

April 29, 2013 at 12:41 pm 2 comments

Icing on the cake

Things have been crazy for the last six months. My sister had a stroke in November because of a tear in her carotid artery. She possibly has a connective tissue disease but they are still trying to figure that out. Then Gabe had his growth hormone stimulation test and threw up for three hours straight and it turns out he makes plenty of growth hormone but isn’t processing it.  But they have no idea why!!!!! And he still is not on growth hormones. As far as Max goes he’s been having a ton of stomach issues and might need an endoscopy. The meds are not working to help him. And the pulmonologist thinks his asthma is acting up and wants to rule out vasculitis.

The icing on the cake is that I have/had thyroid cancer. I say had because I had my whole thyroid removed three weeks ago. They think they got it all but I will find out more next week. 

Way too much going on in my life!!!!!!! 

April 4, 2013 at 3:32 pm Leave a comment


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