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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Saturday, November 29, 2014

Thankful. {ramblings about insurance and such}

We have so much to be thankful for, and I have spent the past week consciously focusing on being grateful and happy. Not that I'm not always grateful or happy, but it seems like there is always a never-ending list of grown-up responsibilities waiting for me, and as long as there are pending items on that list (especially anything dealing with money, bills, or Raya), it's hard for me to be able to relax. It is difficult at times to not let "life" steal my happy. The busier I get, the harder it is to slow down and just be happy. I feel like the past 2 months have gone by so fast that I haven't been able to enjoy anything so I really needed to just slow down and breathe.

Last week, the list was pretty long and it was all stuff with imminently pending deadlines, the most important of which being our open enrollment for next year's health insurance. We had a 2 week window to complete the open enrollment process in and I couldn't even bring myself to look at any of it until about 12 days in. When I finally did, my heart was pounding out of fear over what the benefits & costs of coverage would look like for the year. I breathed a HUGE sigh of relief when I realized that although the options were vastly different than previous years, they were actually as good or better, and the costs hadn't gone up TOO much.

I spent about 3 hours last Sunday afternoon adding up all of our family's medical expenses, out-of-pocket costs, and premiums from 2014 to date so that I could make sure we were choosing the best option. We went down the list of options and completed the process so our family will have medical, dental, and vision coverage for next year. I have said it before and I will say it again and again: There are no words to express how grateful I am for insurance coverage, and for GOOD insurance coverage. Before Raya was born, the biggest medical expenses we'd had were from delivering babies and the annual visit to the allergist and refilling of Cole's Epi-Pen prescription. I had heard of insurance companies denying coverage for things but had never experienced it. (ha ha, those were the days)

This has in no way been our most expensive year medically, but it has still been an expensive year. I'd rather not share numbers publicly, but the grand total so far of medical and prescription expenses (not including premiums) is a few thousand more than what our first house cost us. Roughly 75% of it was Raya's and we're not done with the year yet. We are also fortunate enough that she has qualified for secondary coverage through the state due to her medical history, so nearly all of the expenses for her claims after primary insurance has paid its portion have been picked up by her secondary insurance and we have pretty much only had to pay the rest of the family's copays & coinsurance out-of-pocket. Again, there are just no words to express how deeply grateful I am for the very thorough insurance coverage Raya is able to have. It would be very difficult for us to get by without it and to be honest, her level of care would probably not be the same.

Coming back from that tangent, once I finished open enrollment Sunday and finished editing my sister-in-law's family photo session Monday, I tackled the only other urgent item on the list: calling the urgent care from this summer about the billing/insurance problems they've caused. Usually I dread making calls like that but this time it was different because of the letter I had gotten from Raya's secondary insurance a couple weeks before. {Here's the back story: took her to urgent care in July, urgent care isn't contracted with primary insurance but is contracted with secondary, was told that since she has that secondary insurance everything would be covered, got a bill 2 months later, called about it and was told by the urgent care that they would not and could not bill secondary since primary had denied the claim, was told I'd have to file the claim with secondary myself, secondary had no idea what I was talking about and asked me to send in the bill and a letter explaining everything.} The basic gist of the letter I got from the insurance company was that the urgent care was violating a number of state and federal statutes by billing us directly for a covered service. It is the most beautiful letter I've ever gotten from an insurance company, right up there with the one we got right after Raya got her first feeding tube saying that her formula would be covered at 100%.

Anyway, I called the urgent care to discuss the statement they had sent me and the letter from the insurance company. When I explained the situation to the billing rep, she got quiet for a second and said, "Let me put you on hold for a few minutes while I check with my manager." When she came back on the line a few minutes later, she apologized for the hold time and then said, "Who told you that we couldn't bill secondary insurance?" Thanks to my habit of taking meticulous notes during any and all important phone conversations, I gave her the lady's name, the date of the conversation, and read her my notes from the conversation. She said, "I'm really not sure why she told you that because there is no reason we can't bill secondary for this. Your primary is out of network so the claim would have just been processed as out of network and then would have gone to secondary. It shouldn't have ever been sent to you in the first place without going to secondary first." I believe that was the moment that the heavenly chorus started singing. She said she would resubmit it to be billed to secondary and that the account was now on hold status so I could disregard the statement. I got off the phone and once again felt so deeply thankful. {and in full disclosure, I was also really REALLY irritated with the first person I talked to in the urgent care billing office that told me there was no way they could or would bill secondary since she clearly had no idea what she was talking about, but I decided to just let that go} It is moments like this, which in the grand scheme of things are pretty small and insignificant, that remind me that my Heavenly Father is mindful of me.

Once that monkey was off my back, I was ready to just enjoy the week. Raya only had one day of school this week, so we had to get a picture of her with the giant inflatable turkey before Thanksgiving:

I love her school! They always decorate for whatever season or holiday it is and the kids love it. After school, I decided to take full advantage of our one and only day of respite care this week since her provider had other plans on Wednesday, and I took a nice, leisurely 2 1/2 hour trip to the grocery store. Thank goodness Piper is such a happy, laid back baby and puts up with stuff like that. One of the things on my list was non-dairy "butter", and the grocery store I shop at doesn't have the kind I needed, so we had to go to a different store. While I was browsing through the refrigerated case, I found this stuff:
It was $3 for a quart but worth every penny! It's delicious and dairy free, and it doesn't make me itch under my skin like the soy version. With a little bit of begging and pleading, I convinced Raya to taste it.
I have just about convinced her that whenever she's trying something new, she has to take at least 2 or 3 tastes of it in order to be able to taste it well enough to decide if she likes it. Especially with the tiny little tastes that she takes. After a couple of tiny sips, she decided it was pretty good and she ended up drinking about an ounce.
I accidentally drank the rest of the quart. It was tasty.

Tuesday was therapy day, as usual. We had called in sick to therapy last week so we HAD to go this week or else I might have called it off and spent the whole day at home. It was not our worst day at therapy but OT was a little rough. Raya has gotten to be really defiant lately. It is frustrating to try to get her to do anything unless it's something she really wants to do, and sometimes it's even hard to get her to do things she does want to do. Her therapist did get her to draw a picture of herself though. There was a lot of coaching involved but the picture was pretty good.
Interestingly, she said the big circle right below the face is her stomach.
She wrote her name but the marker was giving her trouble so her therapist did the Y for her. She has worked really hard the past couple of weeks to make her R look like an R and she's doing a great job with it now.

Feeding therapy went fairly well. At her request, I brought her some black beans and tortilla chips and she ate all of what I brought. I never know from one day to the next how much food to bring to therapy. I'm thankful to see her on an upswing again though. It kind of figures that things would seem to be improving shortly before we go out of state for motility testing though, right? (*eye roll*) Piper had a lovely day at feeding therapy too. I didn't bring enough food for her either, apparently. She wolfed down the container of baby food and wanted something else, but all I had in my bag was a dried fruit bar. She looked pretty cute holding it.

I didn't think she'd bite off chunks of it but she kept getting chunks off and then making gaggy faces and letting them fall out of her mouth. She didn't choke on it or gag though so I was pretty happy with her ability to handle strange new textures in her mouth. If it had been Raya at her age, there would have been a LOT of vomit involved.

I got a package in the mail from my sister this week. She's a nurse, and this was the box she sent the package in:
Kind of funny being on the receiving end of a package mailed in a medical supply box for a change. I'm sure it's not really funny but it struck me as funny.

Other noteworthy events include Piper getting closer to figuring out how to get her knees under her:
It lasted for exactly the amount of time it took me to snap a picture.
Everyone caught yucky colds again (not good) and Raya FINALLY learned how to actually blow her nose (VERY good).

Children did laundry. Always noteworthy.

Piper spiked a fever and then refused to swallow Tylenol, which renewed my appreciation for feeding tubes and also my belief that all babies should come with them so that their mothers can still give them medicine when they refuse to swallow it.

Whilst clearing kitchen counters in preparation for Thanksgiving, I realized that a whole corner of my kitchen has become a graveyard of old syringes, cruddy G tubes, and used extension tubes. This is just a small sampling.

And then there was Thanksgiving. It was lovely. We normally have Thanksgiving dinner with 40 or so of Donny's relatives but this year it was a really small gathering with just 11 of us.
Kaida got a lesson in making radish roses from Grandma. Raya never misses an opportunity to get in a picture. :)

The weather was absolutely beautiful! It got into the low 80s so the kids enjoyed their Thanksgiving dinner out on the back porch.

There was also a lot of selfie-taking with the aunties:
(this one is obviously not a selfie)
The answer to the million dollar question is, yes, Raya did eat food on Thanksgiving. She ate some of her special mashed potatoes (no dairy) and we also discovered that she likes yellow bell peppers.
She ended up eating part of 3 different servings of potatoes throughout the afternoon & evening, and one or two small slices of bell pepper. She also had a few small tastes of a dessert I had made. (lemon pudding mix + strawberry Jello, mixed together when they're both hot) It was a good food day for her.

We had quite the smorgasbord. We usually eat Mexican food for holidays and have done both Mexican food and traditional Thanksgiving food for the past few years. With as much food as we ended up having, we could have fed an army. And look at the size of these tortillas!

In other news, we found a couple more things at the store that Raya likes:
The So Delicious brand (appropriately named) Pumpkin Spice and Mint Chocolate flavored coconut milk is really good! Raya likes both of them. I do too. The pumpkin one is like drinking a slice of pie. It's also thick, which I suppose would be an added bonus for someone with dysphagia who needs thicker liquids. The mint chocolate one isn't as thick but it is SO yummy! She has already asked me to save some of both of them to take to therapy on Tuesday. I don't know why she's suddenly back to eating a little more and tasting new things, but it's one more thing to be thankful for!

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