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Archive for the ‘Project Hannah’ Category

For those of you on facebook, I created a “cause” for Hannah.  I’m not asking for donations at this time, I’m just trying to spread awareness of what is going on with her.  When we know what the actual diagnosis is, I’m going to come out fighting and do whatever I can to help her!

Join “Hope for Hannah” today!  We already have over 75 members in just three days.  My goal is to get to 500 members, one member for each child who has NPC.  Please invite your friends as well so we can reach this goal!

Tomorrow is Thanksgiving.   I give thanks for so many things… my children, both my parents and inlaws are healthy, I have good friends, family who is supportive, and a husband who is just the most amazing and wonderful man…my best friend.

To all my friends and family reading, Happy Thanksgiving to all of you!

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My pity party from yesterday morning is over.  I guess I need a good cry and lashing out every once in awhile, because I’m back to feeling motivated and ready to kick ass against whatever is going on with Hannah.

There are so many things I need right now to deal with this, and it is hard finding what I need…mostly answers.  But here they are…

1.  Alternatives to NPC and Gaucher’s.  Even though two are the ones we are waiting testing on, what if these come back negative?  I’ve tried twice to get alternative possibilities from our genetics doctor, and he has yet to give me anything.  I realize that if I know what the alternatives could be, then I could focus less and stop dwelling as much on NPC, you know?  What else could it be?

2.  If Gaucher’s is unlikely, why is it still on the table?   I understand from the Gaucher’s specialist that I emailed that her 50% to 55% enzyme level activity is too high for it to be Gaucher’s disease, but could Hannah be a fluke?   Or is just testing it to rule it out along with the NPC test a “just to do it” thing and I shouldn’t get my hopes up (isn’t it sad that I would prefer gaucher’s disease over NPC?)

3.  Finding a support group.  Damn, it is so hard trying to find a support group around here for parents (and even siblings) of chronically or terminally ill children, doesn’t have to be disease specific.  Even online.  I’ve met some WONDERFUL parents of kids with NPC recently, and they have been a godsend.  Truly have.  Just being able to talk about it, hear their stories, just be able to reach out to someone who understands.   I’ve sent emails to the Ronald McDonald house out here, and I’m going to call TCH downtown next week to see if they have anything. 

4.  Coming up with a fighting game plan.  Once we get the diagnosis for Hannah, and if it turns out to be NPC, Gaucher’s, or something else life-threatening, I want to start fighting right out of the gate, as you already know.  But coming up with a solid plan is so difficult.  I have so many ideas, but where do I start? 

This is just the beginning…there are so many more, but I just looked at the clock and realized I have to jump in the shower for Big Boy E’s Thanksgiving party at school.  See, that is another thing.  What do I say when people ask “how is the baby?”  Most people here don’t know what is going on with her.  How do I respond?

But life is still going…off to put my son, my second grader, in the spotlight now.  It is hard when I am so consumed with Hannah lately, but Daddy and I are going to really start making a conscious effort to focus more attention on the other kids as well.  (Yep, we had a big talk about that last night).

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That old addage “preparing for the worst, but hoping for the best”… that is where I am right now.  I’m tired of crying about the “what if’s” and the “could it really be true,” I’ve decided to just prepare myself for the worst — that she has Niemann Pick type C, the lead diagnosis we are currently waiting for the skin biopsy results on.  Even if she has Gaucher’s, we still have more hope as there is some treatment available.  Anyone who knows me personally knows that I am not the type of person to sit around and do nothing and wait.  I admit I’m impulsive, and when I have my mind set on something, I will do what it takes to make it happen.   

I have been talking to a few moms of children who have Niemann Pick type C via email, and I even spent an hour talking to an amazing mom from Canada who just got the skin biopsy results the day before I talked to her.  Her toddler boy has NPC.  They all opened their hearts to me, let me ask questions, and gave me such support that I truly feel stronger now.  I look at one mom who I’ve been email with, Chris, who has gorgeous twin girls with NPC.  She is so amazingly proactive — getting the girls’ story on television, prominent scientific magazines, fundraising for research.   She told me to get started now and prepare…just in case.

So, that’s what I’m going to do right now.  Prepare for the worst, and pray for the best.  If it is NPC, then I want to be ready the day we get the diagnosis to get Hannah everything she needs.  If it isn’t NPC, then I will have somewhat wasted a couple of months — but it is not really a waste, because for everyone who reads this blog, they now know what Niemann Pick disease is and how devastating it is.  Exposure is so important with this disease. 

I have dozens of ideas in my head right now.  I know I’m going to need A LOT of help from my friends and family — both resource-wise, brainstorming, and even fundraising support in their local communities.  i need to work on a game plan.  I need to have everything ready so IF the day comes and it is NPC or Gaucher’s (since I’m going to plan for both), then Hannah will have everything she needs THAT moment the word comes down.  And if it isn’t either NPC or Gaucher’s, I will work on this plan until the day that a diagnosis IS found for her condition.

I’ll most likely be sharing most of the ideas here in my blog.  This is the “ground floor” of getting Hannah well.  I’ll be damned if I don’t try everything in my power to keep Hannah well and give her a long, happy, and comfortable life!

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