Archive for May, 2011

Over reacting

I admit I am overly sensitive and over react a lot. But I don’t know if I am this time. Two weeks ago at Gabe’s school it was extremely hot in his classroom. When I got there to pick him up at 1 o’clock he said to me that he was very tired. His face was extremely red and he came home and laid on the couch for 2 hours. The next day I told his teachers and asked if they would ask the director to put their window unit in. They said they would rather that I ask. So I did. At first she gave me an attitude that no classes were getting theirs for a few weeks and of course I stressed Gabe’s medical needs and the fact that on top of his medical needs he is on a diaretic which makes him get dehydrated faster. The next day the air conditioner was in. The problem is his teacher doesn’t feel hot and doesn’t turn it it. I have to ask her to turn it on, which pisses me off.

Yesterday when I got to school they were going on a field trip. Gabe was wearing his medical alert bracelet for the first time. A few weeks ago Max went on a field trip with his Sunday school class and I asked the teacher in charge if they were taking medical info with them on the bus and they said no, which prompted me to get medical alert bracelets for the boys. So yesterday when we walked in his teacher asked what he was wearing. I told her it was a medical alert bracelet so that if G-d forbid something happened then they would know the medications he takes and his condition. She looked at me like I had two heads and really didn’t get it at all. She just kept saying that they didn’t take the meds with them so she wasn’t sure why he needed it. To say the least I was pissed and went to the director. I said I was frustrated and feel the teachers do not know how to handle having a child with a medical condition in their room and that one day last week they didn’t fill his water bottle up the whole day and that I have to ask to have the air conditioning turned on. I also mentioned about the field trip. She said Gabe was not one of the kids who was red flagged because the doctor never filled out a special form with all of his needs on it. I thought I was going to lose it. His doctor filled out the medical they gave me. No one ever mentioned something about an extra form. AND the school is the preschool at our Temple where we have been members for 5 years. And for the past four years I have taught in the nursery school. And this is Gabe’s third year there. And EVERYONE knows he has ARPKD!!!!!!!

So what I am wondering is if I am over reacting to this whole situation??? When I picked him up today his face was red and the air was off. I asked the teacher and she said she just turned it off because she was cold. Huh?? Then put on a sweater! We got home from school and Gabe laid on the couch for over an hour and then fell asleep in the car on the way to soccer practice for Max. And did I mention he did  not want to eat much this afternoon. I am just angry and frustrated and sad and really don’t know what to do about it. My sister said there are only 5 weeks left of school and I need to drop it and not let it bother me, but I’m not sure I can. This is a private preschool that we pay a lot of money for that is at our Temple and I feel like they should respect Gabe’s condition and respect me enough to follow through on these very simple things.

I guess that is enough for my ranting and raving for one night.

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May 10, 2011 at 7:54 pm 2 comments

The System….Again

Gabe was denied growth hormone by our health insurance company. They said he was not low enough on the charts, had not dropped off the charts, and is not in imminent need of a kidney transplant. Just the crazy system working against us once again. I am so frustrated about the whole process. We started the process in January. And now almost 5 months later we are nowhere. Our nephrologist is going to appeal it and thinks it will work but I’m not so positive. I think if they don’t deny it based on those things they will on something else. And what’s the most frustrating is that Gabe has not gained weight in months and really isn’t growing that much taller either. He is about at the 7th percentile for height and the 2nd for weight. And the nurse said he will just need a higher dose of growth hormone if we wait. It’s not like he’s just going to grow out of this. He has a chronic kidney disease and also is deficient in one of the hormones his growth hormone produces (we are not sure if that is related to the ARPKD or not). And did you know that growth hormone costs $2000 a month????? So it’s not like we can just go out and do it on our own. And to stress me out more we had to change Gabe’s medicine for his bladder because he was having some erratic behaviors which is a side effect. And the new medicine cost $56 for one months supply and he started peeing in his pants more. So to say the least I am stressed out as usual!!!!

May 8, 2011 at 9:02 pm Leave a comment


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