Archives for category: diagnoses

Well, 2014 and the new insurance changes have brought about the kind of changes I anticipated.  Our family was not allowed to keep our existing insurance, because due to insurance rule changes my husband’s employer decided to go the cheaper path.  Now we have insurance that will not cover my daughter’s formula even though she is g-tube fed and her life depends on it.  It is not supplemental nutrition, it is her nutrition, but that doesn’t matter to Cigna.  Our previous insurance covered all of her formula as long as it was her only form of nutrition, which it is.  Not our new insurance. Apparently, they don’t care if she gets fed.  To add insult to injury, we are paying twice as much for this insurance, which covers less and requires us to pay a percentage on everything they do cover (what that may be remains to be seen).  We do have Medicaid as a secondary, but due to my husband’s income we have to pay a premium for the upper level of that, so that’s costing us more as well.  Right now we are waiting to see if Medicaid is going to cover her formula.  I am holding my breath, because her formula is nearly half of our entire income, and there is no way we can afford it out-of-pocket.  What are we supposed to do?  As it is, like a lot of families, we barely make it week to week, and now with all these extra charges I am really afraid for the first time in my life of how my family is going to survive.  These insurance changes that were supposed to be a blessing to everyone are really screwing us over, so thanks a lot.  Affordable healthcare? I wish I had the energy to laugh out loud at that one, but it’s really not funny.


I did not realize how long it’s been since I’ve done an update on Miss Lizzie.  Lizzie is growing and improving every day.  Lately she has learned how to “give five”.  She will put her hand up to receive five if you say, “Give me five.”  She also is standing more and trying to walk along her bed railing.  Recently she gave me a little scare when she lost 5 pounds.  That’s right, 5 whole pounds!  Then I went to her parent teacher conferences and it shed a little light on why.  It turns out my girl is walking up a storm at school.  They informed me that she walks from her classroom at one end of the building to the gym at the other end of the building where she participates in a half hour of gym and then walks back again, in her gait trainer the entire time.  It’s no wonder she lost weight, she’s burning a lot more calories than she was, and we hadn’t added any calories to her diet.  So, after some adjustment to her feedings I am happy to say that she has started gaining some weight again.

Lizzie has followed up with some of her doctor’s this week.  Her neurosurgeon said that she looked good and that he doesn’t need to see her again until next year.  That was a pretty standard visit for us.  She gave him a high five, with which I think he was properly impressed.  She wouldn’t give the nurse five though, because by then she was too happy pulling the paper off of the table.

Her weight check appointment went off without a hitch.  It actually was so short that it made our venturing out in what was blackened skies, torrential downpour, and a vicious electrical storm almost ridiculous.  But it’s done, and now we know that Lizzie is gaining back the weight she lost.  She is back on the right track.

Today we got some interesting and awesome news.  Lizzie went for a cardiology follow up.  Lizzie has always had to follow up yearly with a cardiologist because of something called a bicuspid aortic valve.  The aortic valve is a valve on the heart that is supposed to have three parts, but a bicuspid aortic valve only has two.  This is a cause of some concern because the parts of the valve are working harder than normal to compensate for the difference, and because of this it is something that needs to be watched closely.  Because we only go once a year, we seem to have some bad luck with keeping our cardiologists.  Every year we call and have to see a different doctor.  Today we saw another doctor for the first time.  He came in and was so good with Lizzie.  He talked to her.  He let her play with the curly cord on the blood pressure cuff while he manually took her BP after the automatic machine wouldn’t take her reading because apparently it doesn’t like wiggly kids who won’t hold still and try to lick and bite its cuff.  He told her she could play with that cord.  I thought, “Great. Here’s something that might actually keep her occupied during the echo.”  The echo tech came in and immediately took it away.  Lizzie wasn’t amused.  She also tried to pocket Lizzie’s measuring tape, something that I’ve found to be a good distraction for her, because “I’m sorry but it looks like one of ours.”  Probably because I got it at the same hospital as you, Lady.  At this point neither Lizzie nor I were amused.  I had to wrestle Lizzie the entire test because the lady was not allowing her to have the things that worked as distractions for her.  Needless to say I’m exhausted.  ANYWAY.  When the doctor came in after the test, he told me that they actually were able to see the third branch of Lizzie’s aortic valve.  In other words, it’s been there the whole time.  They just had never been able to get a good enough picture to see it.  She doesn’t have that worrisome defect after all!  How awesome is that?  She does have a more common, less worrisome issue with her mitral valve, but that is something that according to the doctor rarely develops into a bigger issue.  Because of Lizzie’s other health issues the doctor still wants to see Lizzie yearly, but the heart issue itself is so much less serious.  So all in all it’s good news.  I am so happy.