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.

These next three months are going to be absolutely nuts!

We close escrow on our new house on April 17th!   We have to be out of this house by the end of May.  Sounds doable, right?!   Right now, we are trying to figure out how we are going to layout the new house.  Basically, we now have two extra rooms with big pieces of furniture and storage, so we don’t know what to do with it at this point and what we are going to be able to squeeze into the new house.  Losing 700 square feet is a lot of “stuff!”  But we will make it work!

We also got tentative dates for Make-A-Wish.   The last week of April or the first week of May.   Hannah’s doc still hasn’t given the official approval yet, but the Make-A-Wish grant volunteer wanted to see what dates would work better for us because they want to make sure that we get to stay at Give Kids the World.  Daddy and I want so badly to start planning for this trip, but we aren’t going to do it until we get the official go-ahead.

Abby’s birthday party is coming up as well.   We are going to do a park party on April 10th (thanks to my mother-in-law who is doing most of the planning!) and we told her that if we do go to Disney World that we will also celebrate it there too.

Oh yeah, once we close escrow on the new house, we have to paint and recarpet the house before we can start moving stuff over.  The carpet is beyond nasty, and we promised the kids we will give their walls color.  We also were talking about breaking down the wall between the master and Hannah’s room to make one big room (since Hannah sleeps with me at night now), but I’m not sure how much money that would cost.   This way we would have a home office space for both of us plus room for our king bed and a twin for Hannah right by us.

Also, there may be a possible NIH trip in between that would coincide with a possible documentary that is being produced on Gaucher’s disease back east that Hannah and I have been invited to be a part of.

Can’t forget our regular stuff that we have to do  – doc appointments, therapies, treatments, school, homework, Daddy out of town on multiple business trips, etc.

So when June comes around, I think I am just going to breathe!