Murphy's Law Rules the Day

I thought I would blog a little on the early side today. Eric did not have the best of nights last night and around 4 am his Kangaroo Joey decided to stop working. Not being totally awake it took me until about 6 am to figure out the problem and call the equipment company.  I managed to put together a temporary feeding "machine", yes that's right a syringe and a bolost tube powered by myself and his camp councilor. Yes we do have a new pump. The equipment company forgot to call me with a delivery time and left the new pump on the doorstep.

But wait the day gets better. We get to camp and I realized that I have the wrong backpack. I have the red one not the blue one. So I drive home behind the group of cars who will not go over 25 mph in a 40/45mph zone, both lanes mind you. I then drive back to camp. I changed out the back pack and decided to stop at Starbucks on the way home. I could not figure out why a once bustling Starbucks was so slow. That is until I got my drink order. I ordered a venti drink and received a grande, one size smaller. I asked why and was told that since I brought my own cup it was policy* to make the drink one size smaller than the cup.  I took my 3/4 full cup of tea a little miffed. Then it was back home to drop off the red backpack because I could not leave it in the hot car. I know it was only in the high 90's today but with the car closed up in a hot parking lot it was too hot for Eric's emergency kit.

Today must not have been my day to knit either. I spent as much time tinking** as knitting. I did take Jeans advice and call the Starbucks Corporate Offices and spoke to a nice young lady by the name of Lexi. I asked her about the "new policy*" that I was told about at the store. The Very good news is that is not the corporate policy and that they will send me a coupon for a replacement drink. I would like to give Starbucks a shout out for great customer service and the professionalism of Lexi.

This paragraph contains some politics so if you don't like politics please skip it and go to the next paragraph.

I should not have checked my e-mail either. Our wonderful, thoughtful Governor wants to cut our respit services by 50%. When Eric was born the state run institutions were closing down with state and federal  officials saying that they would continue to provide services that would enable us to keep our children at home and in the community. Over the last 2 decades there has been a gradual decline in services.  A mear 20 years later just as our children are reaching adulthood they are cutting the services to the bone and beyond. Yes I know that we are in a recession and money is tight. But it is time to stop cutting taxes. It is time for our elected officials to stop running around like life was a popularity contest and do their job. A sound bite slogan does not give me a good nights sleep. Raise our taxes if you need to but dont' throw our families under a bus.

The political statement is over.

I was to tired to fix much lunch so it was cheese and crackers and time for a  nap. A note to my self, Sheri please restock the cheese drawer. Do you think I will remember tomorrow? A 2 hour nap and it was time to pick Eric up from camp. Now if I could just stay awake long enough to get Eric to bed tonight it will great. If he sleeps though the night it will be even better.

Well it is time to find the energy to pick up and do a little cleaning before the weekend.

At least when I make chili, I usually make 4 servings so at least dinner is cooked for the night.

**Tinking - the polite way to say you have to rip out the @#*&% rows and knitting and redo them

Eric

Eric's room is closer to looking more like a hospital room than ever. Yesterday we got the new suction machine. It is not that I wanted a suction machine but in order to get nursing respite when Eric is really sick, I needed to have a suction machine in the house. I hope that Eric does not get sick any time soon, in his healthy state his needs are high enough. One a healthy day his care needs take 6 to 8 hours per day.

I know that I have a creative bent but I can not figure out how to decorate the suction machine with out destroying it or impeding its functionality. It is a rental so it has to go back when we are done with it. The same goes with the IV pole. I wish that manufactures would realize that these things go into homes to and we do not like institutional gray. Can't they come up with one covered in say Sesame Street friends? If you my dear readers have any ideas please let me know.

Today Eric is having a good day, so he is off to camp and I get to go to do errands and a Tucson Police Department training. This means that I talk about what it is like to be Eric's mom and what I would like the police to be aware of when they come into contact with Eric. I will also include my usual plea to ticket people who park in handicapped parking places without a permit. After all there are not many places I can deploy the ramp on my car.

I wish you a fantastic day and a short to-do list.