A Funky Day

I just know the day is going to be a bit off when I have wheelchair repairs before I have had time to get dressed. To make matters a little more rushed my favorite set of Allen Wrenches were not where I wanted them to be. So I had to get the box of spare Eric equipment parts from his room. Sometimes pieces of equipment come with some spare parts and tools.  I am also still training a new aide for Eric, yes its million question time yet again. So getting Eric to his day program only 30 minutes late was not bad at all.

Once we got to Eric's program, I noticed that the chest positioning strap was not quite right. So I then readjusted all the straps, so Eric does not have to work as hard sitting up. I then took a few minutes to relax before I went to the gym for my 10 minutes planed on the elliptical. I managed to get 15 minutes done.While I was cooling down after my workout a lady noticed my knitting and said that she was having a hard time with it. I asked if I could help her and she then proceeded to try to get me to cure her hands of arthritis. I told her she needed to talk to her doctor or a specialist about her hands. This was repeated several times, I felt like I was in a loop. I was just about to suggest duct tape, it fixes everything, right? When her personal trainer walked up. How do these people find me? What part about talk to your doctor is so hard to understand? I do admit that I am a stay at home mom and I can do a lot of diffrent things, but I am not a doctor. I don't practice medicine without a licence. If you are getting your medical advice from strangers on the street you have more problems than just the arthritis

 Then home to catch up on paperwork. I was only 10 percent through with my paperwork before I need to take a nap. Somehow flare ups make me tired. I woke up with just enough time to eat a quick lunch before I went to get Eric. The rest of the afternoon was taken up by Eric, cooking dinner, cleaning and relaxing.

On Track

I got to hang out with some friends today.  We sat around crafting and talking.  This was followed by Physical Therapy which I hope is almost over.  Then some shopping, a quick lunch and a nap.  I picked up Eric so he could supervise the cleaning and laundry. He actually was worried that I did not have enough laundry and made more for me to wash today.  

I was working with a new aide for Eric this afternoon.  When she tried to rush through things, I explained that Eric's schedule was like a concert.  You don't start with the finale.  So we are working on the rythem of Eric.  I think things will go well.  We just need to practice, practice and a little more practice. We will not get to Carnagie Hall, but Eric will be happy with a smooth routine.  

Tomorrow is being set aside for paperwork. With any luck I will be caught up by carpool time.  

Slowing Down

I have been in a crazy mode since the accident on December 7. 2015. My life just took on an agenda of its own and I tried to keep up. I can really feel the effects it has been having on my body. So I am taking Teri's advice that "No" is a complete sentence with no explanation necessary. I am trying to do things that relax me and that I want to do.

I took the weekend off, as much as I could at least. The guys took me to Dim Sum at China Phoenix on Saturday. Out to dinner with John on Saturday and Sunday nights. Lisa, Eric and I also went to see the movie Mothers Day on Mother's Day. If you need to see a great movie that will keep you laughing most of the time, this is the on to go see. Yes, it is a chick flick. Yes the weekend did include 5 loads of laundry, I am beginning to think in his own way Eric is showing me his love.

Everyone gave me flavored teas to help with a healthier lifestyle. I still have not had a soda since the flu bug a few months ago.

I also have been knitting more, which is not a bad thing. Well it might, because I have a lot of knitting and weaving to do before I really need to shop for yarn. I spent some time spinning today. I am finally unwound enough to try sleep so wish me luck.

A Couple of Words

Eric is not a kid who uses many spoken words. So I thought that I would share his latest gem. We we both napping after the long stint of being awake when Eric was sick.

I was just waking up from my nap when Eric said,

"I'm alive"

I just wish I knew what the rest of the thought was about. I just can not prompt Eric to talk when he does not want to or can not manage speech.

What I need is someone to invent a machine that translates thoughts into the spoke word. Any takers?

A very Long Day

Eric got sick right before bedtime last night. It was a very long and eyrpy night. On the bright side as of bedtime tonight he is back on formula. I also worked on a bag of UFO yarn, finishing 1 charity hat and starting another. I will finish all the projects in this bag first.  I have decided that I need to knit or redisposition the yarn to other projects in any project bag that I pick up. This is so that I don't have bags full of yarn 6 months from now with no plans or pattern attached.

I managed to get all the eyrpy laundry washed. I have decided not to fold the laundry today. As long as it is clean folding the laundry was not an issue today.

I am sorry if this blog is choppy but I have been up almost 40 hours and am really feeling tired. With a little sleep tonight all will be better in the morning.

Ranting Again

My day was going really well then....

The formula supply company just called and is trying to change the formula AGAIN to save money. At least they were upfront about it this time. I thought we had this resolved. They even acknowledged that they have the doctors script. We have to try at least a partial case before we can say no. I swear that Amazon may become our formula supplier if this keeps up. Then bill the health insurance company for what they are required to pay for by state law. They don't care about Eric at all. Just their @#%$#@# contract and nickle and dimeing the patients to keep their bottom line. If they can not break even on on the contract that they bid on, then maybe they should not have bid so low on the contract with the insurance company. Or, maybe the insurance companies should give the companies a reasonable operating budget over the cost of supplies. Either way they need to put Eric first.

Asking us to try another formula that might possibly do Eric harm is beyond the scope of my thinking right now. We have just gotten him almost back on his feet from the last formula fiasco. What makes a bunch of bean counters and paper pushers think that they know Eric as well as his doctors. Just because something is similar does not mean that it alike and will work the same. Just think about the possibility of of using oranges instead of apples in an apple cobbler, they are both fruit so it should work, right? I really like the comment that even though it is not listed on the label this new formula has fiber, right what about FDA labeling regulations?

So I talked it over with John. We decided that the best course of action was to call back and ask for everything in writing. I was put on hold for a few minutes. They came back and said the formula change was just a" suggestion". I decided to go with what the doctor ordered and long story short, they will continue to send out the formula that the doctor ordered. I now feel like a wet rag. I think that I will spin for a while to get back to my center. Then spend the evening knitting after dinner.

Things are Better

Things are going better with Eric. Long story short, the insurance company and provider changed the script and formulation of Eric's nutrition to save the insurance company money and prove that the provider was willing to do anything including compromise the health of its patients to keep the newly acquired contract.   After a very small dust up with Eric's nutrition provider, an order of formula from Amazon with next day delivery and some back and forth with Eric's wonderful doctor and the provider of nutrition,things have been resolved.  

We are almost through the first case of formula that I ordered from Amazon.  I am thankful that I was able to get what Eric needed very badly, overnight.  Amazon thank you for you help in this matter.  

Eric has woken up happy and smiling for the last 2 days. He has slept through the night for the last 2 nights.  Now I have to start sleeping through the night again.  His skin color is back to normal.  He has more energy. He is back to being the life of the party at program.  

I am very thankful for all my friends who gave me such wonderful support during this crisis.  I really can't adaquility  put in words what it meant to me.  Thank you all.