Top Ten exciting things about having a kid with a rare disease:

Top Ten exciting things about having a kid with a rare disease:

10) Never waiting in the Emergency Room;

9) Getting excited when you get to just “go to the floor”instead of to the PICU, and then the sad, sad walk back up to the PICU;

8) Those, oh so comfy, gowns and masks that you get to wear until they figure out if your kid has MRSA or C-Dif; ....

7) Finding out that your insurance will pay for the pulse ox, but not the probes for it. Or, that they will pay for the wheelchair, but not the wheels;

6) Having the entire PICU staff do what you say because they are freaked out by your child;

5) Always winning the my kids sicker than your kid award (yay);

4) Leaving the PICU with 100 more things then when you came (how does that happen??);

3) Coming up with different religions to tell the PICU staff that you are. (I know you get matzo balls if you tell them your Jewish. I wonder what they would give me if I was Rastafarian?);

2)  The endless hours that you get to sit and wait and wait and wait uuuuunnntil the doctor FINALLY SIGNS your discharge papers

1)The endless parade of doctors that want to come and see this rare disease (How many doctors can you fit in a cubicle?) ;   

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