Archives for December 2008

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.

Growing up, I was never really heavily religious.  Sure, we did the important holidays (Passover, Hannukah, sometimes Rosh Hashana and Yom Kippur).  However, I always felt a strong connection to my Jewish culture.  I guess you could say that I’m “culturally” Jewish.  I married someone who wasn’t Jewish, but he embraced the Jewish religion, learned all he could (which was more than I knew), and agreed that we would raise our children Jewish.  We joined a temple shortly after getting married, but that lasted only briefly.

Now that I am facing this possible life-threatening situation with Hannah, I find myself becoming more attached to my religion.  I have probably talked and prayed to God to keep Hannah (and my other kids) safe more times in the past few months than I had over the past 10 years.  I must have said “please” a million times at least for so many different things these past few months. 

So now, I’m finding myself being drawn back to getting more involved in my religion.  My husband even is feeling the same way.  Why is it we only reach out when we really need something “bigger than us” to believe in?  Thank goodness religion is something that will always welcome us with open arms.  My husband even wants to have the kids try out religious school this Sunday.  Big Boy E is VERY excited about this idea, as he is fascinated with God, religion, and understanding what we can’t see.  Little Girl A will just have playtime.

Regardless of what happens with Hannah, I know that we will need this kind of support in the future.