Learning some interesting possibilities

I found out some really interesting information about a possible treatment assistance (not a full treatment) today regarding a pharmacological chaperone concept.  I’ll share more of the details once they go public.  However, after learning more, it may not be advantageous for Hannah because of her level of enzyme production, but I’m still going to see how this plays out.

It is good to know what is going on out there.

I have only found two researcher groups so far that are looking into GD2 and GD3.  I’m still looking though!

My first “paid” writing gig!

My first paid article has been published 🙂  Hopefully this will be the beginning of a new career for me!  (I know, I have a long way to go, but this is a start!)

Parenting a child with a rare medical diagnosis: Proactive parenting tips
SheKnows, Pregnancy and Baby section

Evenflo, ExerSaucer® Triple Fun Recall

Yep, just got an email that Hannah’s FAVORITE activity, has just been recalled

They talk about the end caps falling off, but she uses it as a circle with the seat.  I’ll have to add calling Evenflo on my list of things to do today!

I’ve become a special needs local blogger…

I’m very excited about this new writing “gig” I got.  It doesn’t pay anything really, but I thought it would be good exposure not only for Hannah, but it would give me a chance to help other local families by sharing their stories, providing information on upcoming local events and conferences, and become a stronger advocate for families of special needs childrens (for example:  sharing HR5748, the Ryan Dant Healthcare Bill).

Check me out – http://www.examiner.com/x-3597-Houston-Special-Needs-Kids-Examiner 

As London on the Suite Life of Zach and Cody says — Yay Me!  (Sorry, only Disney Channel watchers would get that…)

Pacifier, Pacifier, Where Did You Go?

We turned Hannah into a “paci baby.”  When she was born, she really wasn’t into it at all.  It wasn’t until she was getting her blood drawn twice a day or more that we started pushing it to help her during those procedures.  It really came in handy once we started doing more invasive procedures such as venous blood draws, skin biopsy, ultrasounds, doppler studies, skeletal studies, etc.  She would suck so hard on it during those times, you can how much in pain she was.

Since then, we seem to go through so many pacifiers.  Now that she has outgrown the 0-6 month old ones, we started a new collection.  However, even with the really cool pacifier holder, we seem to lose them all the time!   Even though we tried another two brands, she only likes MAM pacifiers, and she only likes the ones with no texture on the sucking part.  We made the mistake of purchase a new MAM set that had ridges on the sucking part, and she will NOT suck on it.  She pushes it out every single time.

They show up in the strangest of places.  Just now I found one underneath my desk in my home office.  Just earlier this evening, I found one near the kids play area.  We must have purchased at least 6 of the 6+ month old pacifiers, and I can only account for about 3 of them right now.  

We need a pacifier locator system in this house.  Not joking.  Lojack for pacifiers….

Be at Peace, Tuesday Whitt

Little 2-year-old Tuesday Whitt passed away from cancer.   Please keep her family in your thoughts