Friday, July 20, 2012

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?) ;   

01 02 03
04 05 06
07 08 11 12


  1. Another thing--The staff knows you by name! :0) Sometimes that is a good thing, sometimes bad.

  2. Alright, I think I may have to challenge you on winning the sicker kid award! lol! You are hysterically funny Shelley... and oh so truthful!

  3. Love it!!!! and let the challenge begin!!! just got to pick out my new apartment in ICU to funny the nurses said I get to choose since Cheyenne has sonority....

  4. number one for sure with us... everytime we are at the hospital that happens to us

  5. I am still laughing about #3! Too funny! I love the fact that when emergency strikes at our house, it is no big deal b/c it has happened so many times, we are pretty well packed & ready to go on a moment's notice with child care arrangements for our other child a phone call away.

  6. OH MY GOSH A woman of my own heart! I feel like I am reading my own words!!! Is it possible there are others that feel these things too? I love this post!

    1. HA HA Yes!!! I think we are kindred spirits all who have to walk the halls of the PICU