Today, I tried to complete as much of the various administration tasks that have to been done during business hours. I squeezed most of the stuff in over the lunch period.
- I logged onto the insurance site to start checking if things were being recorded as I expected them to be, to validate that the services were in-network, etc. I know this will go on for the rest of the year, so I want to make sure that I stay on top of everything.
- I put the important phone numbers into the cell phone and sent them to Mirjan to do the same as well. I don't want to be hunting for numbers at two in the morning.
- I checked to see if the FMLA paperwork has been received from the doctor, and it hasn't. I'll check with them during the doctor visit on Friday. It has to be done within 15 days.
- I called Disney and canceled our trip scheduled for March. It's small in relation to everything else, but we were really looking forward to the trip and having Pops, Elise, and I think Mama, join us. They were very accommodating with the cancellation, which is another reason why we love Disney. They do everything in the customers' interest and are flexible when unforeseen circumstances arise. (This reminds me of a recent school project that Davianna was working on. She had to paste her favorite pictures on a poster board, and one of the pictures was Tinker Bell. Mirjan printed out names for all the pictures and printed out Tinkle Bell. So, Tinker Bell is now referred to as Tinkle Bell when Mirjan is around.)
- Mirjan called JetBlue and they credited the cost of the airline tickets to Disney into a JetBlue travel bank account, which is good for 365 days. She asked me to send her the reservation number, and she would take care of it. She had enough to do today, so that was nice of her. They were understanding and waived the $100 per ticket cancellation fee. They are now my preferred airline.
- I need to create a folder with all of the claims information, payments, etc., but I'll set aside time one evening after the kids are in bed or this weekend to do that.
Here is more information that I gathered from the web:
Youtube Video on Rhabdomyosarcoma
I was torn apart by some of the tribute videos of children who had this type of cancer.
Portacath (or port): The term portacath is a portmanteau of “portal” and “catheter.” In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick.” (wikipedia)
I find that this is becoming a good place to consolidate links and information as well.
I think Ryan is going to give me a heart attack. I had to sit him down three times tonight and tell him to settle down. He is running, jumping, etc. I want him to have fun, but he has had two major surgeries and chemo in the past 10 days, and he's running around like a crazy boy. He was about to jump again, sat down, and said, "Oh, yeah. I'm not supposed to jump so much." I'm still shocked at all the incisions, holes, bump (portacath), etc. on his body. Every time he gets ready for a bath, I'm just amazed. How can he just keep going and going and going?....God is with him! I will continue to work on slowing him down a bit...it really does worry me.
Oh, I almost forgot that this was the second night in a row that he didn't say, "I'm not going to eat that stuff." He wanted to set the table, Davianna got the cups for everyone, and Emma just made a lot of noise. We said the blessing, and then when we were done, Ryan just started saying another one. Emma goes nuts when we sing the blessing...bobbing her head and kicking her feet.
I was tired today, and I think the last 5 days or so caught up with me. I think (uh, know) that I got a little moody this evening...Mirjan confirmed it for me. But she did it so nicely...."I still love you when you're moody," she says. I feel like I could sleep for a day or two...if I could only bottle up and drink some of that energy that Ryan had tonight.
Lord, thank you for today. Thank you for a loud house and children that were happy and playful. Thank you for the food that Jim and Kristi provided. Thank you for Mirjan. Please be with our family, give us strength, let us display your love, let us see the good that you are doing while we are dealing with this, and please continue to hold Ryan in your hands, keep him healthy and strong, and heal his little body. I ask this in Jesus' name. Amen.
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