Archives for March 2011

I was watching a show on TLC about lottery winners.   It put me into a dream state wondering what I would do if I suddenly had millions of dollars.   What would I do?

• By a decent-size house with decent-sized rooms for the kids, a loaded therapy room for Hannah, an office for me and Daddy, and a playroom for Ethan and Abby.   Oh yeah, can’t forget the pool, which was #1 on Ethan and Abigail’s “new house” wish list.
• Hire a house cleaning service to come once a week
• Get Abby an afternoon tutor one or two days a week to help with those areas that she is stubborn when I try to help her with.
• Pay off all our debt (probably goes without saying)
• Hire a nurse/nanny to help me with appointments and such and then use our insurance-paid nursing hours for night nursing so I could have a normal schedule.
• Load up Ethan and Abigail’s college funds
• Put together a research team to focus on what treatments that are available today could be used for Hannah to help buy us time and keep her comfortable (very similar to the SOAR project)
• Start our Little Miss Hannah non-profit foundation and focus whatever time I have left on making that successful.

The funny thing is that I wouldn’t buy expensive cars or mansions, go on fancy vacations, or anything exotic like that (although I do admit I would love to be able to just go shopping again for non-necessities!).   I would focus on spending more quality time with my kids without the stress of worrying about what bill we are going to have to hold off on with Daddy’s next check.

• Not having to worry about cleaning, laundry, or bills…
• Not doing the night nursing anymore so I can focus on Hannah during the day and then the kids after school…
• Knowing that we would have someone medically competent around so Daddy and I can actually start having dates again…
• Having my own research group that I can work with directly to turn over every single leaf that may have something to help keep Hannah with us…
• Removing Daddy’s stress about being the sole income…
• Not having to rely on insurance and medicaid for getting those items that we know would help not only make it easier to take care of Hannah but would also help her develop more skills all around…

Ugh, I need to wake myself up ….

Maybe I should play the lottery.  After all, look at the odds we hit with Hannah getting nGD!

After our meeting with Dr. Raja, Hannah’s new neuro, we feel really motivated to start ramping up on Hannah’s therapies.   Even more so Friday after our quarterly visit with our early intervention physical therapist.

Right now, Hannah only has PT out of the house.   We had discontinued OT because for 8 weeks straight, Hannah would not participate at all.  As a matter of fact, she would even go into hysterics the minute we would go into the OT room.  Even with her PT now, she really does not participate, and we have mostly been working on getting her used to the stander.

However it was quite different with the PT who came to our house on Friday for the evaluation.   Hannah had never met her before, yet she had Hannah working harder than I have seen since we have been in Vegas!

Not only that, but Hannah has been making strides with her early intervention therapist such as actually starting to use the sign “more” and starting to pull blocks out of a box (a skill she had lost since the hospitalization).

The common denominator?  Home therapy (and talented therapists!).

With the help of our early intervention therapist and our medicaid case manager, I have a list of therapists who are home-based.   I called one this afternoon who does speech therapy and occupational therapy, and hopefully we can set this up.    I also have almost finished the paperwork for the Desert Regional Center who will give us the ability to get Hannah hippotherapy (horse therapy) since they only accept primary medicaid and the DRC vouchers.

I feel like we have been lacking on therapies since we moved here, mostly because the lack of quality therapists and also because Hannah just refuses to participate when she isn’t in a place where she feels comfortable.

But not anymore.  Even though the signs are small in the grand scheme of things, we are going to take these signs of improvement and run with them and try to improve them!

On Thursday, I was invited by the Patient Advocacy team at Genzyme to share Hannah’s story with all of their case managers and patient liaison representatives.  I was incredibly honored that they felt so strongly that more recognition and differentiation needs to be made for families with children with Gaucher’s type 2 and type 3 versus those families with dealing with type 1.   From what I understand, this was the first time that Genzyme took a direct approach to really understanding the needs of our families and allowed someone to share like this.

I talked for about 30 minutes with the help of a power point presentation I had put together.  I shared Hannah’s story, what life is like with a type 2/3 child, and shared lots of pictures so they could see that Hannah is a real person, not just words on my lips.

Even more important to me was the ability to be able to share what information I felt was important that these people, who are in direct contact with other families dealing with type 2 and type 3, share the resources available to our families.   I discussed the NIH, Dr. Goker-Alpan and Dr. Schiffmann, Medicaid Waiver programs, our Yahoo email family-only mailing list, and even talked about the Make-A-Wish program.

It really meant so much to me to be able to enlighten these important people on how to help future and current type 2/3 families.   I felt like it was something that could really make a difference in the lives of families of the newly diagnosed so they don’t feel so lost.   I want these families to know that there is family support out there, medical support out there, and even financial support out there.

I was very full of pride after this webinar was over.  I felt it was just one more step to using Hannah’s fight to make a real difference, something that would likely not have been done at this time if it wasn’t for Hannah being here today.

Hannah is an amazing ambassador.  She really is.  She is inspiring, intoxicating, and captures hearts in a way that is rarely ever seen.

Best of all, she is mine 🙂

When I started Hannah’s blog back in 2008, this was the only blog or updated site regarding neuronopathic Gaucher’s disease.   Since then, and thanks to the popularity of Facebook causes, more and more family’s are sharing their fight against nGD.  I want to invite everyone to visit their sites, see their beautiful faces, and join their fight as well.

I’m so proud of these families for helping to create awareness about this horrible and cruel disease.

Addison – type 2, still fighting
Olivia – type 2, still fighting
Emily – type 3, still fighting
Kyle – type 3, passed away
Bailey – type 3, still fighting
Marina – type 3, still fighting
Joseph – type 2, passed away

She lies next to me in bed.  Sound asleep.   I’m on “night duty.”

I have spent hundreds of hours just gazing at her while she sleeps, holding her hand, caressing her face, kissing her.   I love the way that she grasps my hand even when she is asleep.

She is having some mild seizure activity right now.  Her hands are twitching and her head slightly goes back and forth.  When I see it start, I grab her hand and just hold it.  Maybe it is my imagination, but it seems like the twitching slows down.  It eventually stops for awhile, and she sleeps even deeper.

I love the feel of her skin, the curl of her hair, the softness of her breath as she sleeps.  I run my fingers all over her face and arms every so lightly.  I cherish these moments because it gives me time to just soak everything about her up and burn it into my memory.

I just want to continue to soak up her being.   She is still alive, still here, still fighting.  She has captured my soul.

She is my hero, my sweet hero.  She is my heart, my love.