"New Normal"

It's hard to believe that Hayden has been home from the hospital for a month.  Summer is flying by and Hayden is getting better and better everyday.  In the mean time we are all adjusting to our new normal.  I hate that word "new normal", but I guess it's kind of true. Its all new and its as normal as its going to get for the time being.

Top 10 Ten Reasons you know your life is sort of getting back to normal.
1. You’ve been home for one month and haven’t had to call 911.
2. The sweet sound of Sponge Bob permeates the house at all times.
3. You go out to dinner with the entire family.
4. You take the Hayden to the friend’s houses, movies, to the pool club, Best Buy and Swirl.
5. The quiet nights are free from alarms and Code Blue PA announcements.
6. Hayden misses the cute nurses from UCSF…but he would never admit it!
7. Hayden used his “bribe” money to buy an X Box and now his biggest worry is what games to buy.
8. The kids are starting to annoy each other again.
9. I have taken control again of the social schedule for the entire family.
10. John and I don’t have to sleep in a foldout hospital chair anymore.

Really Mom, my sister is annoying me!

Dinner at Marin Brew Co. while watching the Giants game.

Yummy frozen yogurt at Mill Valley's Swirl.

Hanging at the pool with friends.

Top 10 Reasons you know you’re not quite back to normal:
1. Your son is still on a ventilator at night and oxygen during the day.
2. You have to pack up O2 and life saving equipment whenever you go out of the house with Hayden.
3. You have registered your house with the police and fire department as being potentially "explosive" because of all the oxygen in house.
4. You're constantly worried he's going to get sick again.
5. The Master Bedroom is now Hayden’s room and Hayden’s Star Wars room is now our room.
6. When I go to sleep at night it is in a king size bed situated in Luke Skywalker's Sand Cruiser and there are glow in the dark stars on the ceiling.
7. All of the grown up art in the master bedroom is covered with Simpsons posters and Sports posters.
8. Life size images of Buster Posey and Lionel Messi are permanent fixtures in the master…I mean Hayden’s new room.
9. The first night nurse fell asleep on the job….John and I are doing "night watch” until a replacement is found.
10. Instead of the fold out hospital chair, which ever of us is on “night nurse” shift sleeps on the blow up bed next Posey and Messi.


The blowup bed in Hayden's "new" room where we keep watch
over him at night until a new night nurse is found.




O2 Tanks waiting to go out on an adventure with Hayden. 
The machine next to them is a condenser that provides oxygen
for Hayden and refills the tanks for us. We are high tech here!