Empty Wrappers Found

Tonight we found an empty candy bag. (They happened to be a bag of those Hershey's bliss- mint flavored- for me) It led us to investigate and we found this stash of wrappers in a drawer in his desk in his room. It is pretty disheartening. We are now talking about getting a lock for the pantry door.

Frustration!!!!!

I am so so so frustrated! On December 28th, I took Payton to get his blood drawn and handed in two separate scripts written for different tests by different doctors. One doctor ordered a Vitamin D test and one ordered T4, TSH etc. I have been trying to track down lab results because all they keep faxing is the vitamin D results. I called the lab today- no other lab work at all! None. I asked them what happens to the papers I bring in from both doctors on the day of the lab work- well, they are supposed to be entered in the system. How does a whole lab order just not get entered? They only keep the blood for a week so they can't rerun the test. And of course you don't find out there is a problem until after a week is up. What more are you supposed to do to make sure people do their job? So I've got to contact the dr. which takes forever and have him fax a new order (to a different lab for sure) and wait that much longer for it to send to insurance not to mention poor Payton has to go through another blood draw all over again. He is really good for them but I feel bad for him.  I could just scream!

Tick-Tock

Just a little insight on how long things can take. We got the latest denial for growth hormone on on October 23rd. We saw the endocrinologist the next week for a regularly scheduled visit and he reviewed the letter, told us it was completely false and said he would write another letter refuting it. We went to the national conference the middle of November and met another Dr. who said she could help. We met with the endocrinologist again Dec. 1st and I was discouraged that the letter still hadn't been written but he roughly drafted it out while meeting with me. He also ordered labs and requested another sleep study be done before he wrote the letter which we did in the last two weeks of December. Then the last week of December, we got his letter that he had drafted for insurance but it didn't say that he had received the labs or the sleep study report yet so I was confused. The next Monday I called his office to talk to the person in charge of the insurance stuff with why I was confused, and was I supposed to send the letter even without labs and sleep report or was he supposed to send it since that's what he originally said? A week went by without hearing anything back and I waited because sometimes it takes that long to get a call back. I called again this week and got a response today. So, now after all that, I know that I am supposed to be getting the labs and the sleep report in the mail and sending in those with the letter I received from the Dr. into insurance myself as well as to the State Insurance Board. Oct. 23rd to January 11th for one more step in this process. That's what a lot of people don't understand–the amount of time it takes for each part in the process and this is what wears on me over time.

All things Santa

Payton asks so many questions about Santa and Christmas during December. We even tried to tell him the truth about Christmas last year and he either couldn't or didn't want to process it because it went right over his head and he was back to believing completely. He had a little meltdown the day after Christmas. I think he needed to let go of all the build up and excitement and decompress. When I see how difficult the whole month is for him, I really start to wonder what I can do differently next year to cut down on his anxiety. I start to think that all the Christmas magic isn't worth it because of the meltdown afterwards. But that's not fair to the rest of the family. There are so many questions I don't know how to answer which makes things worse for him: What kind of car does Santa drive? Who drives him? Where does he get the car from? How does he get here from the north pole? Where are the reindeer if he is here visiting? Why do the beards look different on each Santa. Why are the suits different? (With him picking up on every tiny detail on his bus, I'm sure he does the same with everything about Santa.) How does Santa know where I live? The day after Christmas it's Where is Santa now? Is he sleeping? Where is he sleeping? How long will he sleep? Are the elves sleeping? Where is our shelf elf? How does he get back to the north pole? How will he come back next year? Why... where... how? on and on and on. All of these questions are in his broken speech like, Where the elves be? How Santa be tired? etc. It is really tough to deal with.

I just read this book and loved it! 

For someone who has been hounded all month long about all things Santa it was fun to read a good explanation about the traditions and legends. I will definitely be using it a lot next year maybe it will help alleviate some of the stress for him.?. 

Sleep Study

Payton's sleep study was a week ago. Our follow up appointment was Thursday. No one thought that there would be any way to show through data that growth hormone was helping Payton's sleep at night but the doctor was very pleased that the results were so drastic. The first part of the night was without the CPAP machine. Last year the number of times he obstructed during dream sleep was 58 times an hour. This time it was 7. That was without a mask so the only thing to attribute that improvement to is growth hormone supplying the needed muscle tone to his airways. Now she can word the letter to accurately reflect that his improvements are due to growth hormone hopefully supporting that it is medically necessary and stupid height requirement shouldn't even factor in. He will continue to use the CPAP for another year and then retest. It looks like it is leaking a lot at night so we need to get him a memory foam pillow and a satin pillow cover to minimize the friction with his mask and see if we can improve things at night.