My wonderful neighbor coordinator a fundraiser with our local Chic-Fil-A, and they have agreed to donate 20% of all proceeds that night to help us fight for Hannah’s life. 

I went by there with Hannah and Abby yesterday, and I was able to meet Mica, the marketing director, who is organizing everything on that end.  It was so nice just to be able to thank her for everything she has done and to introduce her to Hannah and Abby.   She was such a sweet lady, and she even gave Abby a bright yellow balloon (which Hannah had been eyeing the entire time!).

Here are the details:
       April 7th, 5:00 PM to 8:00 PM
       Alden Bridge location, Research Forest and Kuykendahl
       MUST bring this flyer for the 20% to be applied

Please share this flyer with all of your friends.  You can even just send them the link at http://www.littlemisshannah.com/chicfila.doc 

Thank you, Chic-Fil-A, for really caring about our community and helping us fight for Hannah!

I haven’t been able to find out any more details on the press release from Neuraltus’ regarding their funding for a new Gaucher’s Disease treatment.  I could be wrong in assuming, but since they work in neurodenerative diseases that they must be working on something for type 2 or type 3. 

I have had no luck yet finding out.  There doesn’t seem to be a website for Neuraltus that I can find.  I have emailed two of the founders at their respective hospitals.  I have also emailed two of the venture capital partners.  I cannot find any contact information for the CEO they mention in the article, Ari Azhir.   I found a phone number for the company Azhir works for, but when I called it, it was disconnected (probably old).  I’ll give these emails a couple of days.  Then, if I don’t get an answer, I will start calling around. 

I just need to know if this is hope for GD2 or GD3… even if they can’t give me details yet, just let me know which GD it is for.  If anyone can help find out, I would so appreciate the assistance!

Busy day today…

Hannah had her developmental therapy session today.  She absolutely loves Jenny, our therapist.  Jenny was so impressed that Hannah actually sat up and balanced on her butt for almost 20 minutes without falling.  My baby girl is getting the sitting thing down — she is even starting to put her hand out to balance if she falls, but that is something we need to work more on.  Hannah also showed off how she loves to stand (holding on to something) for a couple of minutes as well.  She gave us suggestions on working with her to get her knees into a crawling position as well as to continue working on the back-to-front rolling over.  I love working with her because she gives me suggestions that seem really easy to implement, and I do work with Hannah at least two to three times each day on her developmental therapy.  The success is starting to show!

As for eating, I replaced 2 ounces of water with 2 ounces of apple juice in 3 of Hannah’s formula bottles.  She had absolutely no problems with that.  We also put applesauce on her tray at dinner with us, and she just played around with it and the spoons & toys on her tray.  A bit of it got into her mouth, and she would give a weird face, but she didn’t completely freak out. 

Then, and this is big, we gave her a biter biscuit.  She was munching on that thing for about 10 minutes.  In and out.  She wasn’t really sure if she liked it, but she kept chewing on it.  She chews on everything, so this was a perfect idea.  I was staring at her, literally the entire time because I was afraid of choking.  But she was fine.  She only ended up eating maybe about 10% of it, but at least that is a start.  The funny thing was when she got a bigger piece, maybe about 1/3 of a cm, in her mouth, and she started screaming and crying.  She would not let it go into her mouth more! 

But thanks to so many of you, I got some wonderful suggestions that we are going to try out.  Thank you!

Last, and definitely not least, my dear Abigail.  It looks like she is going to have to have her third set of tubes put in.  One tube is basically almost out, but the other one is completely blocked and nonfunctional at this point.  Sadly, she still has middle ear fluid.  So, we are going to wait 3 more weeks and then make the decision.  I’m actually glad it isn’t right away because we just have so much going on with our trip to California for Passover and Hannah’s swallow study.

Boy my little girl, you have kept me on my toes for 8 months now!!  

You have grown so much the past month, not just in size, but in all the tricks you can do.  I love watching you stand up in your exersaucer, “ba-ba-ba” to me, and laugh hysterically at the Wiggles still!  What is it about Wiggle Sam Moran that makes you laugh so much?   I am so impressed with your actual “baby steps” you take between Daddy and I when we hold body while you stand and walk.  Sure, you still may not be able to turn over back to front yet, but I have a feeling you will be walking before you do!

You have an incredible way of charming every one you meet.  You just have such an infectious smile that makes everyone want to cuddle you.  God knows you have me wrapped around your little fingers with just that cute little grin!    You even have your brother and sister totally in love with you.  They can make you laugh so hysterically every time; is that why when they walk into the room, you get so excited?

We can definitely see your personality start to come out now.  The way you you make that perfect frown when you are in your “I want…” moments.  The way you are so independent and love to be able to play with toys all day long.  The way you seem to be almost unaffected now with all the medical procedures, examinations, and pokes & IV sticks.  You take it all in stride.  I know, you really don’t know any different in that respect, but you are my hero.

I love you, my little Miss Hannah.  I will continue to fight for you every minute, every day.  I will continue to love you even more than that.  We will celebrate on the 25th day of every month, celebrate another month of having you here with us, shining your smile and warming our hearts.

Happy 8th-month birthday, my beautiful girl!