Thank you, Senator John Cornyn!

It has been EATING at me that we got declined for SSI because of our income (which is not that great for a family of five!).  So, you know me, I decided to take action!  It is just WRONG that people who need assistance don’t receive it, especially if they have been paying into the system for decades! 

I wrote a letter to Senators John Cornyn and Kay Bailey Hutchison, our Texas senators, about our situation last week.  I ended the letter asking for help with that issue as well as “In addition to requesting assistance from your office to obtain eligibility, I would like to work with your office to alter the eligibility requirements for individuals with severe chronic medical issues to obtain SSI benefits.“

I also wrote our local congressman, Kevin Brady.  Kevin Brady’s office sent me an “I’m sorry but that is the way it is” letter with a phone number to call the state senator to see if there are other assistance programs available.  Not quite what I was looking for. 

Today, less than a week later, I received a letter back from Senator Cornyn’s office:

“Thank you for your recent correspondence and for bringing this matter to my attention.  The decisions of the federal agencies have a direct impact on the lives of many Texans.  For that reason, I understand the iportance of this issue to you.  As your United States Senator, I am happy to offer my assistance.

However, the Privacy Act of 1974 requires me to have your written authorization before obtaining personal information from a federal agency on your behalf.  If you would like for me to proceed with a congressional inquiry, please complete, sign, and return the enclosed form to my office…It is a priviledge to represent you in the United States Senate.  I will await your response.”

How awesome is this!   I don’t know how a “congressional inquiry” proceeds and what exactly it means, but it has to mean something!

Hannah’s medical break is almost over

With the exception of Hannah’s bi-weekly cerezyme treatments, monthly visits to her pediatrician to keep tabs on her GD, and therapy sessions one to two times a week, Hannah hasn’t seen that many “white coats” in the past few months since we got the diagnosis.

That is going to change in a couple of weeks when we add these procedures:
1.  Swallow study, April 16.
2.  NeuroOpthalmology evaluation, April 2x?
3.  PET Brain scan, Michigan, May (more details later, very interesting)
4.  Lead genetics doctor — May/June?

And as I sit here writing this out, I know there is something important that I am missing…I’ll have to update this later!

Pea-flavored formula anyone?

Yesterday, I worked on yo-baby yogurt with Hannah for her two attempts at spoon feeding.  Though she didn’t cry or scream, she did NOT like it very much.  Though, I was able to finally get in about 1/2 the banana flavor in the morning and 1/3 of the vanilla in the evening.  It was a struggle.  She would NOT open her mouth for me.

Today, I tried baby-food peas and a fresh-smushed banana.   Nothing.  She refuses to open her mouth.  I think I will video tape our next attempt.  She literally and purposefully keeps her lips shut and looks away!  The only time I was able to get anything in when she would start babbling.  Then she figured out that trick.  She actually gagged on the banana, maybe it was too slimy?

So I decided to try another test.  I took the rest of the baby-food peas and put it in her bottle and used that instead of rice cereal with the formula.  Basically, a pea-flavored bottle.  OMG, she inhaled that thing!  Usually we stop her every 5 to 10 seconds to take a breath anyway (she usually puts away a 6-oz bottle in less than 10 minutes).  She kept pulling my hand back to her mouth, she loved that bottle!! 

Obviously, we are not dealing with a taste issue here.  It is definitely texture related or she is just being a stubborn girl.  Or a combination of both.   I think I’ll keep trying the spoon feeding twice a day like I am supposed to, but then if she doesn’t it eat, I’ll just replace the baby food with the rice cereal in her bottle. 

At least she is still getting the nutrients, right?

Chic-Fil-A fundraiser – April 7th!

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!

In search of Neuraltus’ Ari Azhir or just answers!

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!

Neuraltus Pharmaceuticals Funding for a Gaucher’s Disease drug?

Co-investing in the Series A funding are Latterell Venture Partners of San Francisco, CA, VantagePoint Venture Partners of San Bruno, CA and Adams Street Partners of Chicago, IL. Dr. James Woody of Latterell, Annette Bianchi of VantagePoint and Terry Gould of Adams Street will join the Neuraltus Board of Directors.

Neuraltus was founded in 2005 by Michael McGrath, MD, PhD, Professor of Laboratory Medicine at the University of California, San Francisco, Edgar Engleman MD, Professor of Medicine and Pathology at Stanford University School of Medicine and Ari Azhir, PhD.

“Neuraltus offers a strong pipeline of compounds for the treatment of serious neurological diseases for which there are few if any clinical options,” said Dr. James Woody of Latterell Venture Partners.

“It is a great vote of confidence when investors with so much experience in biotechnology have chosen to devote their resources to Neuraltus,” said Ari Azhir, CEO and co-founder.

Neuraltus has a number of compounds in the pipeline, including a drug to treat ALS (Amyotropic Lateral Sclerosis, also known as Lou Gehrig’s Disease), a drug that will reduce dyskinesia (jerky involuntary movement) in patients suffering from Parkinson’s Disease, and a drug for the treatment of Gaucher’s Disease (a Lysosomal Storage Disorder). The Series A funding will enable Neuraltus to conduct and complete phase I and phase II clinical trials for each of these disorders.

“We believe Neuraltus has the potential to develop innovative drugs for these intractable diseases,” said Annette Bianchi of VantagePoint.

…

Gaucher’s Disease is the most prevalent Lysosomal Storage Disorder and results from a specific enzyme deficiency in the body, caused by a genetic mutation received from both parents. The disease is progressive, incurable and causes severe disability and death.

Feeding update, developmental therapy, and Abby’s tubes

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.

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