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.

She took her pacifier out of her mouth and put it back into her mouth — more than once today!!!   That’s my girl!!!  (I’m so proud)

I got that Tim McGraw song in my head…


But I realize that is the way I am parenting Hannah now.  She can have as many naps on mommy as she wants, she can have as many cuddles and kisses, and I’m not even going to worry about her getting too attached to me right now.  I do admit, I am spoiling her.  9 times out of 10, she has to fall asleep on me before she will continue sleeping in her bed.  At least now, she is in her pack N play downstairs with me taking a good nap.  Little late, as we were at Little Girl A’s preschool holiday party.   I’m not a co-sleeper, but there have been times when I have taken a little nap downstairs with her on my chest.


You parent a child differently if you fear that you may only have a couple of years with them.   The old rules don’t apply right now.   She can have whatever she wants when she wants it.  She is the most mellow and happy baby as it is, so it doesn’t take much to keep her happy.  Everyone we meet can’t believe how smiley and curious she is — always looking around, happy to be involved in the party, etc. 


 I told my husband, if we find out that she is healthy and (with or without treatment) is going to live a long and happy life, then she is going to be in for a bit of a change!  


Guess who is awake now!

From Hannah’s geneticist’s nurse…

Per XXX Medical Genetics Lab, Hannah’s cells are growing, but rather slowly. They should be sent out to XXX within the next week (or two because of the holidays) for further testing.  Once received, it will take 2-3 weeks for results.

Slowly… of course, I’m reading into this now.  Is slowly bad?  Or is slowly just “slow”?

It has been over a month now since Hannah had her skin biopsy done.  I send an email last week to our geneticist’s nurse to ask her the status (if it had completed growing out so it could be tested), but I never heard back.  I sent her another email again this morning.  


I will admit, not having multiple doctor appointments every week has done wonders for my mental state.  Seriously.  With the exception of the pediatrician, we haven’t seen a specialist since the ENT doctor a few weeks ago and Early Intervention a couple of weeks ago.   The next “round” of medical appointments won’t be until after the skin biopsy has been tested for the lysosomal metabolic storage disease workup.  


I still look at her, and I can’t believe she has something terminal.  Yes, she is developmentally delayed (still hasn’t rolled over yet and is just now grasping at things), she does have the enlarged spleen and liver, and yes, she does have the laryngomalacia.  But she is laughing, smiling, eating healthy, gaining weight, and just overall healthy-looking and happy!  Call it denial or whatever, but I really have a hard time grasping that their lead diagnosis is something like Niemann Pick type C.  Just isn’t registering in my brain anymore.


Regardless, I do find myself a bit lost.  I feel like my life is on hold right now until we know which direction we are going.  We joined our local temple last week, and under “volunteering”, I didn’t put anything because I have no clue what my life will be like after we get the results.  I haven’t volunteered for any of the kids’ school functions because, again, I don’t know what my life will be like.  So many things are “on hold” until we know which direction we are going. 


Again, I just want answers.