50/50

Today was wonderful until 3:15 this afternoon.  Then catastrophe struck.  I lost my Fitbit.  Then that was followed by a call from Eric's new formula company saying that they could not confirm that he had a g-tube. That was the head desk moment of my day.  My only question that I asked the supply company was how many years did he have to have a g-tube in place before their company would finally file the paperwork with the insurance company.  They have only had 6 weeks to get their act together.

So my solution to the Fitbit problem was to order a new one online. I ran down to the store when they said the Fitbit was ready.  After waiting for 15 minutes for the overflow from customer service to clear the item pick up only line, they could not find my order.  Apparently in this store they send out the emails saying that the item is ready for pickup when they get the order at the store.  It took a manger, a customer service representative and the warehouse guy another 15 minutes to find the 2 items. I went straight home to get it set up.  I did not need John's help to get it up and running.  All I needed to do was charge it and type a code into my app.  That connected everything together, computer, iPhone and iPad.

On the formula front I will call the insurance company in the morning and ask for a manager. I will explain that this is the company that they sent me to when the other company did not renew their contract. I will explain how the new company will not send in the paperwork because they can not confirm that he has a g-tube. I will then ask them to look in the special notes section of Eric's file and explain that he has had the tube for more than 10 years. I have not decided weather to ask them if they have any interest in Eric's health or if they would just take care of it first. I will give them until 5 p.m. CST to solve the problem. If I do not get a reply by then, I may have to scrounge for the right formula for Eric as we are almost out.

John had only heard about the Fitbit before he offered to bring in dinner.  He is so wonderful.  Just as I was almost relaxed it was time to help Eric with an extra breathing treatment and manual percussion. He is finally asleep. My hands are getting stiff from doing percussion for 20 minutes, I hope that my hands are usable tomorrow.

Now I just I just need to get to unwind again before I try to sleep. So I guess while it is quiet I will get some picking up, laundry and other chores done. I hope to tire myself out by midnight so I can get at least 6 hours of sleep before tomorrow.

Why Picnics Are a Bad Idea

I have come to the conclusion yet again, that picnics are a bad idea with Eric. I am a slow learner on this one and will probably try again next year.

We went to a food festival at a park today for lunch. I thought that we were evenly matched John and I verses Eric, but I was wrong we were out numbered. So out numbered it is not funny.

The wind picked up the moment we sat down to eat and feed Eric. So all his supplies and napkins tried to fly away. Eric was playing with his mickey tubing and managed to untwist it. I did not notice till after I sent 10 cc's of food everywhere, wheelchair, boy, the back side of the bib. This type of mess is hard enough to clean up at home with a lot of extra kitchen towels and sponges, it is not fun to clean up with napkins that try to fly at me once they are coated with food. I think we gave a fine tribute to Soupy Sales with food everywhere. Did I mention the syringe got stuck and the food went flying straight up in the air and down on my pants. Why did Issac Newton have to be right?

We got to listen to the Catalina Foothills High School Steel Drum Band, under the direction of Dr. Tina Walton, while we ate lunch. They are wonderful and have a CD of there music available through the school. I think that might just be a present for someone this year.

Since it has not cooled down enough for the bees to hibernate for the winter they were everywhere. I don't think a lot of people know that you are not suppose to swat at bees anymore because of the risk of Africanized bees swarming in self defense. I am so glad that the bees did not swarm.

After lunch we did one turn around the park and headed home in almost one piece, hot and tired.

All in all a pretty good outing if you don't count the flying food.

Have a great evening and enjoy your families.

Hard to be Cheerful

It is hard to be cheerful on a day like today that went through the blender called life with Eric. I had a nice leisurely day planned out a little knitting, getting caught up on some of my shows, errands and a quite lunch at Sweet Tomatoes.

10 am. the call came from the wheelchair clinic, silly me I thought that they were confirming his appointment for tomorrow morning, but no they had to see him today. They could see him at 10:30, now try making it to the high school and then to their office in mid town in 30 minutes, do they think I drive "Chitty-Chitty,Bang-Bang"? When I said I could not make that one they said that they had a 1:00 pm slot, that I could make and and even had time to cram lunch down in the parking lot before the appointment.

They were reluctant to help me get Eric from the chair, but I stood my ground and the tech finally figure he would not get the chair for the modifications till he helped get Eric out. That is when Eric's Mickey Button popped out. Eric has had a g-tube for over 7 years and this has not happened once. I did manage to get it back in, but had to change it when I got home. And then Eric managed to knock down my drink and there was that to clean up. At least the supply company was nice about it and could not believe that this has not happened before. Cross your fingers with me to hope everything will be OK till the spare button comes later in the week.

The new Sunflower Market at River and Orange Grove is very nice. We stopped by because I needed a little sane serenity dippity in my life to today. Did I mention that it was the grand opening today, definitely not sane but the staff was well trained and very nice. The Representatives from Harris Ranch Beef also gave a good tri-tip recipe. Use a salt and pepper rub. heat the grill to 350 cook the meat for 45 minutes turning every 5 minutes, Boy do those guys know how to cook a mean tri-tip roast.

The snow birds came out in droves for the grand opening and defiantly do not like to give the van accessible spaces to people with wheel chairs. There is nothing worse then waiting for a space and having a snow bird block access and practice hand jesters that they deserve time outs for. Where are their children when we need them?

Here to a quite evening. Sorry dad there was no way that this day was going to turn out "somewhere between great and fantastic" I really tried. Should I offer a bonus to Eric if he goes to sleep on time?

The comments and opinions in this blog are mine. I have not received compensation from Sunflower Market or Harris Ranch Beef.

Have an wonderful evening and enjoy your families.

Friends

Everyone should have a friend like Justin. Justin is Eric's friend at camp. Justin has gone from a shy boy to a great advocate. Take today for instance, I made a big time mommy boo boo. When I packed Eric's lunch for today I forgot to check to see if there were any extensions and syringes in Eric's lunch pail. Just to clarify Eric has a mickey button( better know as a g-tube) which goes right to the tummy, we don't fool around with food, we send it straight to where it is suppose to go.

I got the panic call that there was no tube or syringes, so Teri gathered the supplies and I my purse,pod, knitting and headed off to camp with the supplies. Eric's camp councilor was happy for the supplies, Justin on the other hand told me to "be more careful next time and don't ever forget it again" He said I was not doing my job right. I needed to take better care of his friend.

There are other times that Justin will tell me about Eric's day or what supplies I need to bring to camp for the current fundraising effort. I am so glad that Justin is in Eric's life. Justin will go far. Some day I hope to see him on the Governor's Council for Developmental Disabilities as a Self Advocate. I can also see him answering questions and providing training to public servants on how to handle the disabled.

Thank You Justin for being a wonderful part of Eric's life. And for the rest of the world please look beyond the physical and learn to look at the person. I know that if you meet Justin you will know just what I mean.