A Surreal Day

I spent the day trying to fix things in my realm. My success rate was about 50%.

On the easy things like John's ink stained shirts I was told that "he needs to stain one more shirt, because the price break is at three shirts." Does this mean that I was suppose to go home and stain one more dress shirt and come back for the better price? I am taking this as a win, the shirts will be ready at 5pm tomorrow.

I got gas for the van before it ran out. Breakfast out at 10:30 am and a lunch of a slice of cheese and some crackers eaten at stop lights at 2:30 pm, I did not mind hitting every red light, at least I got some lunch before I picked up Eric. To make it even better John brought home dinner. So on food I will call it a win.

I thought I had a win on laundry getting three loads finished today. Eric had other plans. He filled his personal laundry basket twice today. So I added a fourth load of laundry tonight. A break even.

On the problem with Eric's formula. The people at Nestle's Ethereal Nutrition were wonderful. At least I found out that there was no recall or plant issues. I even got a case file number to give to the people at Corman.  Corman is an interesting company to say the least. The first person I spoke to swore that Eric had not had a delivery since 2014 and of course the formula went bad after that amount of time. The second person I talked to at least found Eric's file. She would not replace the 8 cases of formula that were mishandled in transit. This resulted in the formula curdling like cheese. Rendering the formula useless for Eric or anyone else. That they would instead send a refund to United Health Care. Insert whatever swear words you want here.  She sent one expedited case so that Eric could eat tonight and the rest of the week. The  rest will be here by Friday. They would also not pick up the bad cases of bad formula, so they sit in the living room. Net loss 8 cases of formula  and no reserves for when things go south with the paperwork snafu's that always happen. This is not even close to break even.

I thought that I had a break even with the issues at Eric's day program. I thought that everything was fairly settled. My personal feeling is that we will never see the program fees that walked away.  So I wrote a check for the missing money and this months fees. Handed the missing paperwork that has been filled out countless times to a reliable person. So I will only write check from now on and have everyone sign for the paperwork they receive for Eric. So I thought that I was good until I opened My email at 5:00 pm only to find a demand for the the money owed,almost like a collection letter. I am sincerely hoping that this was just a lack of communication on their part, I hope that the check I wrote at 9:45am is not lost already. I also doubt that I will see a full accounting of where Eric's fees landed, because he was either sick or stayed back on most of the field trips.  You decide.

No time to make three pairs of earrings for tomorrow. That makes me sad, but I will try to get them made tomorrow for Friday.

Tomorrow will be better.

Weaving

Todays weaving. Each ball of yarn weaves about 1 foot of fabric. I am almost 2 feet into a 6 foot project. My arms are sore from warping this loom. I am sure it is because of the width. Each color stripe is 1 inch wide or 10 dents per inch. For the matching fabric for the skirt I will need a helper to warp the loom.

John made an adjustment to the loom which made it easier to weave. I had been thinking about the problem for 6 hours. He said that I was on the right track and had the adjustment done in less than 15 minutes. The loom is nowset up for a short person.

Eric is also feeling better and back on formula.

A Lucky Day

Today we got the letter from our insurance company saying that Eric’s formula will be covered for another year. This is the first year in a long time that we did not have to spend months fighting this. We are not sure how this happened, but we would like the trend to continue.

Another Long Day

Eric had a very rough night last night, which resulted in 4 loads of laundry today.  It's been a very long time since I did 4 loads of laundry in one day. The good news is that Eric is back on formula tonight. I on the other hand feel very tired. Not much got done today, but that's ok.

I am still managing to go without cola even when Eric is sick. My drink creation today was Moroccan Mint Tea with 1/2 tablespoon of peach syrup per cup. Over ice of course. Not quite the sugar and caffeine rush of cola. Not the same crash either.  I also resisted my early morning urge to bake a coffee cake, just because I did not want to do the clean up. If I am too tired to clean up, then I must be to tired to bake.

I still can not do a lot of creating because of my hands. The less I use them the less they hurt. I am still waiting for the swelling to go all the way down.  I did not touch any knitting needles today. This is bad because I am in a very creative period and feel as if I am sitting on my hands. I also use the summer to do a lot of my charity knitting, to read lots of small projects like hats and scarfs for kids. I also have a few new designs that I am in the middle of knitting. As a result, I am bored and playing too many video games.

I think I am also going to try a different haircut that is not as fussy as the one I currently have. With my current hair cut I either have to blow dry it or fall asleep for a few hours then brush it out to make it look good. I want to go back to comb, fluff and go. 

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. 

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.

A Great Day

Last night was pretty wonderful, everyone including Eric slept. Which left me with the energy to pick up around the house. I unpacked some of Eric's supplies And made the pile of supplies smaller. The main thing though was finding a place for everything. Every item no matter how small found a home or an exit strategy. 

Eric also went back on formula today. He is doing well enough to be back at his full night time rate tonight. 

I even got 15 more rows of the shawl knit tonight.  This was made possible by the short rows I am doing. Each row is 2 stitches shorter than the last row for another 23 rows.  Then there will be a pattern change. 

Well it is time to write up my to do list for tomorrow.  So have a great day.