Just another instance of Hannah capturing hearts…

Our developmental therapist, who we see each Friday afternoon, told us that she was changing jobs within ECI.  At first I was excited for her because this was something she wanted, but then it hit me that we would lose her as a therapist, as she would no longer be doing this anymore.

Before I even brought it up, she told me that she had talked to her supervisor earlier that morning and told her that she would only take the job as long as she could keep just one client (out of her 30+ clients).   Apparently this one client had totally captured her heart in a way that no other client had, and that she felt such a connection with that child and their family?

That one client?  Hannah and our family.

I was so excited to be keeping her and just so touched that she cared about Hannah so much as to hinge her job change on her.  Fortunately, her supervisor agreed, and we get to keep Jenny, our developmental therapist!

This video below was taken a couple of months ago with Jenny, before we left for the NIH.  You can see how hard my little miss Hannah works.  She gets so winded, so quickly, but she keeps going.  After looking at this video again, Hannah really has progressed quite a bit since then.  She is able to do a pseudo commando-crawl now for about 4 feet or so and even tries to get on her knees while she does it!

Her smile of accomplishment at the end of this video just embodies Hannah’s whole personality!

Little Miss Navigator (video)

I can completely understand why the professionals see “scattered skills” in Hannah.  In some respects, she definitely acts a few months younger in terms of what she understands and what she does.  With the exception of saying “you want uppies?”, she never really seems to understand what we are asking of her and just smiles.  But after hundreds of “you want uppies?”, she finally does get excited and tries to lift her arms up so we can grab her.

Then she does some things that just seem so smart, so on track…like this.  When she started following us, I was just amazed…this requires physical skill and definitely thinking about how to turn around and maneuver smaller areas. 

To me, this is just amazing!  My little girl just amazes me sometimes.

Jessica Leoni and her family, a CNN story

I have known about Jessica and her family since Hannah was first suspected of having Niemann Pick type C back in November of last year.  NPC is incredibly similar to neuronopathic Gaucher’s disease with the exception that instead of the lack of a certain enzyme to rid Hannah’s body of fats, NPC is lacking the enzyme to rid the body of cholesterol.   These lysosomal storage diseases are brutal. 

Jessica’s story was featured on CNN yesterday with regards to the California budget problem.  

I look at the video of Jessica just a few years earlier, dancing, smiling, and just being a little girl just like Hannah is a smiling and happy girl now. Then the progression of these diseases since we have no cure or treatment for either of them.

Just a reality check as to what we will likely have to deal with in the future…

Pop goes the Wiggles and Hannah goes Pop!

Hannah loves, loves, loves the Wiggles.  I mean, Sam Wiggle comes on, and she giggles and smiles like a little schoolgirl!   There is one part on her Pop go the Wiggles DVD that she absolutely loves more than any!  She gets wildly excited when she sees it.  LOL

Look who got her new shoes! (Okay, orthotics!)

Surprisingly, Hannah hasn’t really complained much about her new ankle/foot braces.  I was expecting a bit of a fight, but nope, it hasn’t happened!  

She does fight, however, when I put the stride-right size 4-1/2 extra wide shoes over her SureStep orthotics.  We are going to have to look out for other shoes because those just are so klunky!   Also, I think going from being barefoot and wearing socks all the time to trying out these big clown-like shoes (with the stride-rites on) totally throws her off. 

She probably feels like she has weights on her foot!

They are really cute, actually.  They have pink, purple, and yellow flowers on them with a pink velcro strap.  Hopefully, these will last for about 4 months (so we were told).  

She is to eventually wear them all day long except for naps and sleep time.  But until then, the first day is two hours on two separate occasions, then three hours on two separate occasions, four hours on two separate occasions, etc.

Alec Baldwin – Lyso what?

Neuronopathic Gaucher’s Disease is a lysosomal storage disease…

Even sleeping, she is just adorable!

Hannah has been sleeping in her crib for about 6 weeks or so now.  Between my video monitor and our movement sensor, I feel quite comfortable having her in there now.  She was just getting way too big to sleep in her pack’n'play overnight.  She would roll around, and she is longer than the width of the pack’n'play now!  I know, I know — it is better for her anyway.  Much more comfortable.

Last night, I was watching my monitor of her, and she just looked so adorable.  So, at midnight, I took this picture with my phone.  

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