Coburn Kids

This weekend was Gena’s last day of horseback riding, she had a blast with her lessons. Afterwards, Daddy and Gena joined Adessa, Caden and I at the West Jordan Veteran’s Memorial Park.  They have an awesome western themed playground there that we were scoping out for Adessa’s birthday party in June. Caden wouldn’t eat at all while we were there.  Refused the bottle, I think the wind has something to do with it.  Earlier this month he wouldn’t eat at the baby blessing either and that was outside.  Maybe it’s too much stimulation there.  So he went almost 6 hours without a bottle.  No, he wasn’t fussy at all (everyone asks if he gets fussy when he hasn’t eaten).  Went to sleep on the car ride home.

Later on we all went outside for a nice BBQ and the girls played in their pool.  They loved today and it was great for Daniel and I as well. You can also see pics below of Caden stylin’ in his new hat and sunglasses.

This picture was taken on Friday. Adessa saw a Spongebob episode with “scary bikers” and announced she wanted to be a scary mean biker.  So I put her in my leather jacket and got her a hat.  She went outside on her little bike and became very upset when people who walked by her weren’t scared.  It was adorable.  She eventually gave up and told me that apparently only boys can be scary bikers and girls were mermaids.

Reading the Salt Lake Tribune today I came across a story that just hit so close to home:

http://www.sltrib.com/news/ci_9424142

Family sues insurers over girl’s formula

Ashley Zundel is finally getting the nutrition she needs.
    Since January, the 9-year-old girl has put 6 pounds on her tiny frame. Her once ashen gray skin has a healthy pink hue and her hair is noticeably shinier.
    Ashley, who has eosinophilic gastroenteritis – a condition in which there is an abnormally high number of white blood cells in the stomach and small intestine – is allergic to food. It is a condition she will have her entire life.
    While the other students in her third-grade class rush the cafeteria, Ashley retreats to the teacher’s lounge where her mother hangs a 60 mL syringe of liquid formula on a stand, connecting it via a plastic tube to the “button” on her stomach.
    The $130-a-day, doctor-prescribed formula is nearly the only thing that doesn’t give Ashley diarrhea, stomach aches, headaches and sore throats – that and turkey, sweet potatoes and cherry flavored Dum Dum Pops.
    But her family’s insurance company won’t cover the formula and their donated cache of it is running out.
    This week the Zundels filed a lawsuit in the U.S. District Court for the District of Utah against their insurance company – BlueCross BlueShield of North Carolina – alleging the company is violating the terms of its plan and demanding that it pay the $1,000 to $4,000 a month cost of Ashley’s formula.
    Heidi Deja, a spokeswoman for the company, wouldn’t comment on the litigation, but said it typically honors claims for enteral nutrition – or tube feeding – if it is doctor-prescribed and cannot be purchased over the counter.
    The Zundels say that includes them.
    “It seems pretty clear to us,” said Brian King, their Salt Lake City attorney. The company’s own corporate medical policy states that if the formula is prescribed for a malabsorption syndrome and two other conditions, “it’s covered and it’s paid,” he said.
    Unlike some states, Utah does not require insurance companies to pay for enteral nutrition formulas for patients such as Ashley (such a state law wouldn’t help the Zundels because they have an out-of-state insurer). But Rep. Christine Johnson, D-Salt Lake City, is trying to change that.
    Johnson and House Speaker Greg Curtis are jointly sending out a letter to insurance company representatives next week asking them to meet and discuss voluntarily covering it.
    “I’m hoping to do it without a mandate,” said Johnson.
    Without the help of their insurance company, the Zundels will be hard-pressed to pay for their daughter’s formula. Tammy Zundel said she may be left with no other choice but to quit her job so her family will qualify for Medicaid.  “It makes no sense to me,” she said. 

The last paragraph is what gets to me. When we asked the social workers/hospital employees/financial aid people what we could qualify for if we ever hit Caden’s lifetime insurance maximum, or if the medical supplies that the insurance won’t cover becomes too much… we were told outright the same.  “Quit your job, qualify for medicaid.”  Doesn’t it make you sick to know that the system you pay into your entire life, when you really need it and actually TRY to keep your job and keep providing for your family, you will be denied. We can’t qaulify for CHIP, SSI, medicaid or even go privately because Caden will always, from this point forward, have pre-exisiting conditions or we simply make too much.  Which sounds okay in theory, we make too much to qualify for a government program so it should come out of our pocket so that people who really need it can get those funds.  Except that I know families who have to spend thousands, literally, a month for their child’s therapy, food, schooling and other resources.  What family can afford thousands a month every month, no matter what you make? 

The “quit your job” is a decision that too many people have had to make in this country just to give their child the medical coverage they need.  Good people who had GREAT jobs.  Who were living a comfortable lifestyle, who just happened to hit their liftetime maximum or who’s medical bills became overwhelming for their child.  We had a friend in Texas who had to quit his job and find another so that he could get a different insurance carrier for his son and start his lifetime maximum over again. Which would be a nice option for most people but how akward it must be in a job interview to ask upfront what insurance carrier they use. Or to even leave a job that you feel comfortable in, that you excel in, and start the job hunt for reasons completely beyond your control because there are no other options.

In a related matter, Daniel’s work actually had to switch their insurance carrier because of us.  They are a relatively small company, they had great rates, but when a small company has 1 employee that runs up nearly a million dollars in medical costs in a matter of months that the insurance company has to pay… they’ll raise the rates of everyone in that company. Sorry for the soapbox today, but the situations that some families find themselves in is depressing. Depending on those dollars and resources that you are led your entire life to believe that if something ever does happen they will be available to you, and then finding out that even though you did everything right you will be denied is heartbreaking.

Caden has been the biggest pill with eating!  Gets 2 oz.’s down him and he believes he’s done.  In other news though, on June 17th Caden is going to get his Mic-Key button!  Which will be so nice not to have this tube hanging out of him all the time. He’s doing really well on solids though, taking about 3 tbl.’s at a time so that’s nice.

Gena and Adessa are now in the same karate class together, which makes life so much easier.  It’s coming to the end of the school year, Gena is out on June 6th and Adessa’s last day is June 19th.

I’m so glad it’s warmer now too!  I take Adessa and Caden to walk to pick up Gena from school and they love it.  We’re getting our front yard redone as well.  We had a case of grubs last year that ate up our grass.  We didn’t catch it as it was happening of course because that was when myself and Caden were in the hospital and there was just literally no time to worry about a lawn at that point. So I decided we are just going to rip up the entire front.  We’re putting in nice grass, I’m going to redo our planter beds.  Get some new plants that I actually might like (the ones we have now just make it look like we constantly have weeds).  I’ve decided I hate ground cover as well, impossible to weed in and around so I’m excited to get started on that.

I’ve been on a cleaning spree as well.  Throwing out clothes, toys, furniture, everything.  Daniel must stop me soon or we’ll have nothing left.   I just have too much sitting around the house and I really want to get organized.  I plan on staying very busy this summer!

Its been a while, I apologize. So much going on! Caden had his 9 month appointment and weighs just under 16 1/2 pounds. So he hasn’t done much in the gaining department, we fell off the growth charts again. The boy is still in 3-6 month or just 6 month clothes (depending on the brand) and is 26.5″ long. He looks so much bigger then that! His head size isn’t on the growth chart either but he just looks older to me.

He’s not sitting up yet but he has started solid foods! That’s him to the left having rice cereal for the first time. He likes them, will take about 3 tablespoons of rice cereal at a time. Doesn’t seem to bother him too much, except I’ve now been introduced to what all cleft mom’s told me about and that’s the food coming out of the nose. If he swallows wrong or puts his tongue up there it all just comes up the soft palate. I can’t even imagine what that feels like. Daniel and I are pro’s now with his G-tube and it doesn’t seem to bother Caden anymore. He lays on his stomach now and is just back to his happy content self. He’s still doing a bottle really well, 5 oz.’s at a time, but when he refuses the bottle he does it completely. You can’t even get an ounce in him before he throws a fit.

Genevieve started her horseback riding lessons and adores them. She can not get enough of them and is even more excited because on Monday she has a big 10-15 minute oral presentation for first grade. So all weekend we’ve been working on posters and was even able to get a bridle, reins, saddle pad, horse shoes and pictures of her on her horse she works with Pepper. Yes… she’s all ready asked for her own horse.

Adessa is still being a pill with preschool. It took me 20 minutes to leave her the other day. The poor girl is torn I think. She wants to be so independent. She tells me all the time “no mommy I can do this myself” and “Mommy I don’t need you I’m a big girl” for everything. Then the next minute she turns around and tells me not to leave. I think this is just a phase though, that’s she’s just torn with trying to be a big girl and yet not wanting to let go. It’s sweet but can be frustrating.