Posts Tagged ‘zavesca’

I had trouble going to sleep last night even though I was exhausted at 9:30 PM.  My husband and I both went to sleep around 10:30 PM, and then I just started thinking and thinking.  I hate when I do that because I end up staying up until early in the morning (3:30 AM this time) and can’t sleep.  It is like my thoughts get progressively more negative and more intense and worrying. 

Last night, I really started to worry about money.  I’m not going to be able to stay home with Hannah indefinitely even though I REALLY want to.  I kept thinking that “what if” we get a horrible diagnosis — I don’t want to go back to work, I just want to take care of her every moment I can.  Then, I deviated to “what if” she has NPC and our insurance company doesn’t cover the experimental miglustat/Zavesca — it only covers up to $8000 a year and this medical alone runs about $100,000 a year (just for this medication!).  How do we find that money?  We have no choice but to find it, you know?  But where would we find that kind of money for that and her other medical treatments not to mention just our life in general?  So, I started really freaking out about money to the point I just started crying at 2:30 AM.   We are already living off our savings right now because I’m not working — but that won’t last forever. 

Until we know something, and if we get a serious diagnosis like NPC, then I want to be the one to take care of Hannah, not someone else.  I’m not against daycare.  Heck, both of my other kids were in daycare at 18 months (part time).  But if Hannah is going to require special care for her special needs, then I want to…I HAVE to be the one to do it (or another family member that I completely trust).

We celebrate Hannukah and Santa in our house, which obviously spoils our three kids tremendously.  We actually didn’t get Hannah any Hannukah presents this year, and my kids were so disappointment with us.  They kept saying that it wasn’t fair and that she should get some too.  We made the excuse that since she can’t open the gifts, she doesn’t need them this year.  They still believe in Santa, so Hannah will get “Santa’s gifts” from us instead.  I was really touched though at how emotional my kids got, especially my 8yo son, because his baby sister wasn’t getting a Hannukah gift.  We promised them next year she will.

Now that the spending for the holiday season is over and all our big expenditures this year, we are going to be extra frugal in our spending just to try and make it so I can stay home as long as possible.  But I know clipping coupons and cutting back a bit isn’t going to bring us the type of money we need if we get the news we fear. 

I really don’t know what we will do if this actually happens.


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