Haiti

Another way to help the Haiti earthquake victims. Make something and donate or purchase from Craft Hope's etsy shop donating all the money to Doctors Without Borders. I wish I had time to make something, but instead I've money donated to Unicef.

Shoot Me

Simplicity 5696

Believe it or not, I now have 2 valences hanging in my keeping room.....and 4 more to go. That's where the "Shoot Me" part comes in. I went with the bias binding around the bottom because I thought the tassles or fringe would be too formal for my liking. Holy Smokes Batman! Never again will I do this much bias binding. It's taken approximately 10 yards for 3 valences and WAY to much time to keep track of.

Now Meet Darya & Nadine

Since reading about Darya and Nadine yesterday, I can't keep my mind off of them. Both girls are healthy other than Down Syndrome and deserve a rich and full life.

DARYA

NADINE

If you wish to help them find their forever home, go to this blog.

Meet the Hollis Family

Chappy, my sister's co-worker, & Melanie Hollis
Their children:
Caleb (biological,14); Lydia (biological, 11); Natalie (adopted from Russia and has Fetal Alchohol Syndrome, 11); Hope (biological, has Down Syndrome); Charlie (adopted, 1 year old, and has Down Syndrome)

The Hollis Family is nothing short of AMAZING!! Take a look at their blog and join in my amazement. They have a passion to adopt the kids that aren't "perfect" in most of the world's eyes, particularly those with Down Syndrome.

Pay special attention to this post, but grab a tissue first. They are currently trying to raise $20k to adopt 2 more Down Syndrome kiddos from Reece's Rainbow. These kids will be transferred out of their current orphanage to another at the age of 4 where they will be left in a crib with only enough food to survive. Many do not!

If you'd like to join in on their fundraising efforts, please let me know. I will give you their address.

Halloween Photos

For those of you that don't follow along on Hannah's site, life seems to pass us by at a million miles per minute.

Anyhoo, here's Hannah and Austin as Frankenstein and his bride on Halloween.

Socks for Hannah

Hannah now has to wear SMO's. To hide the braces a bit, I've decorated some cuff socks for her to roll down over them. They are easy to do, once you realize that you need to stretch the sock while sewing on the lace or else you kiddo can't get them on her feet. LOL!

If you haven't seen Kathy's sock creations, jump on over. They are to die for! THANKS again, Kathy! Hannah LOVES them!!

EGF Need

With everything going on with Hannah and Austin being in the "terrible twos", I'm a bit behind on life in generally. This is why I rarely post anymore.

Recently, EGF has received two requests which has prompted me a "needs list." If you could stick the following items in your line-up for crafting, I would greatly appreciated it!

• Solid white bereavement sets
• Blankets - any size, any color
• Extra small & small bereavement sets

We have several hospitals that only want the tiny sets as they have plenty of donations for the larger angels. Last week I received a request for just that from the hospital where Emma passed away. Annually I send something but I have never sent a lot since Emma was so beautifully dressed. They've now requested that they be on our regular list.

I've also received a request from a hospital in Ohio that services a predominately Amish population. Thus, solid white is requested. I have sent all of the solid white sets that I have. The bereavement coordinator sent me a link to some photos too. They are beautifully done!

As always, thanks a MILLION for all that you do for the families!!

FA Fundraiser in Hannah's Honor

Becky, a very good friend of mine, recently approached me about doing a Homemade Gourmet fundraiser in Hannah's Honor. She has generously offered to donate ALL of her profits to FARA, the Friedreich's Ataxia Research Alliance.

Please join us in raising money to find a cure for FA!!The online fundraiser will end on Sept 22nd. Please visit this site to place your order. http://homemadegourmet.eventuity.com/e/25311

Big Thanks!!

---------------
Lots of exciting advancements are being made. We need the money to push the research through FDA approval. One of the most exciting avenues being pursued is the HDAC Inhibitor. It is showing great promise in the animal models and blood from FA patients. The HDAC Inhibitor introduces the missing frataxin back into the gene. It has the potential of not only stopping the progression of FA, but reversing the damage already done.

Can you believe it?

I'm finally cutting out curtains!

Fabric

Jason's grandmother used to quilt A LOT. Her health has recently taken a turn for the worst and Jason's aunt that lives about an hour from us cleaned out Nanny's fabric stash. I have now inherited the above. If you see any of if that you could use to make EGF stuff, please let me know. I'll GLADLY share.

Here are a few quilts that Aunt Grayce made for EGF out of some of Nanny's fabric, and some that she already had. Aunt Grayce has an AWESOME sewing room set up in her basement with a wall full of color-coated fabric.

Pillowcase Dresses

My love of sewing came from my grandmother. A couple of months ago, my Mom found a set of beautiful old pillowcases in the attic. I told her that I had some Nana's Heirloom Soak that I bought at a specialty fabric store in Houston when I was smocking a lot. It did a GREAT job at cleaning the old pillowcases.

....and my Grandmother did a GREAT job of making her great-granddaughters pillowcase dresses!

4th Annual Remembering Emma Grace Donation Drive

Obviously, life took a big turn several weeks ago with Hannah's diagnosis of Friedreich's Ataxia. Thus, I'm late kicking off the annual donation drive. I've received several inquiries about whether I would continue EGF. The answer is YES.....as long as I can. I briefly considered whether I could handle everything (and it may change as Hannah's disease progresses) but then I received 3 phone calls/emails for assistance in a couple days. So, I took it as a sign to keep on keeping on as long as possible.

4th Annual Remembering Emma Grace Donation Drive
Date: June 1 - August 15
Goal: 1187 items & $535 in cash donations

Items needed:


Handmade -

Bereavement gowns in all sizes. Boy gowns without "frills" are in high demand. If possible, a set that includes a blanket and hat is much appreciated.
Memory Boxes - This is a big request and I we only have one donor that makes them regularly.
Blankets, approx 24" x 24", in any baby color - I will match with gowns I already have on hand.

Purchased -

Disposable Cameras
Journals
Votive Candles
Forget-Me-Not seed packets
Mesh baggies for locks of hair
Books on surviving the loss of a child
Mini photo frames
Hand/Foot mold kits
Plastic ziptop bags, gallon & larger - I have plenty of the quart sized baggies.
Postage
Print cartridge - HP Black #92; HP Color #93

As always, a monetary donation is very much appreciated. All donations are tax deductible and I will gladly provide you with a receipt.

To date Emmazing Grace has donated 2560 bereavement and NICU items. We have also helped 22 families with funeral expenses or the purchase of a cemetery monument for their precious angel.

Through all of your heartfelt and generous donations, Emmazing Grace has touched many lives. Thank you from the bottom of my heart for joining our little efforts!!

Just like last year, a prize drawing will be held at the completion of the donation drive.

Please feel free to contact me at info@emmazinggracefoundation.org if you have any questions!

Thanks a million!

Candy

Shopping Bag

One of my goals from Earth Day LAST YEAR (yikes!!!) was to make some reuseable shopping bags. I can't stand the plastic things. I used this pattern and some "vintage" fabric from my mom's stash. The only suggestion I have is to round the inner corners of the handles. I think it would make the bag stronger plus easier to overcast the raw edges. The bag turns out to be about the size of a regular plastic bag but I filled it with two 2-liters and 2 gatoraids and it seems to be strong enough.

Hannah's Site

I have created a Caringbridge Site to keep everyone updated on Hannah. I simply cannot keep up with updating things here, my fertility site, and Facebook. So....I'm going to keep a journal here.

Thanks again for all the support!! Precious Hannah has no idea what struggles she will soon face.

Thanks Everyone!

Just a quick and big THANK YOU to all that have called, emailed, and posted to me. Dr G said that he would try to clear an hour out of his schedule this week to talk with us further. We did not receive a call from him today. Here is a a link that has a pretty easy to understand explanation of FA. Some of you may wonder about Austin. He has a 1 in 4 chance of having it too. Without knowing, Jason and I are both carriers. Currently, since there is no known treatment at the advice of Dr G we are not going to test him.

It's Friedreich's Ataxia

Neuro just called and life just turned upside down.

LabCorp says....

neuro has the results now. Still no word from the med asst, though. Am wondering if she'll give me the info without the neuro being in the office today. Torture!

Here's what I know

Neurologist isn't in the office today, Athena rec'd the authorization form and released the results to LabCorp....BUT LabCorp doesn't have the results in their system yet. Med asst still won't return my call.

I'm done....

playing nice, that is. Today, Austin and I had lunch with Hannah. As soon as I got back in the van, I called the med asst at the neuro's office and left her a msg asking if everything got squared away with authorization form. I then decided to call Athena myself again. Nope....no fax yet. Great! Lovely! I'm pretty certain that the fax was sent since Mary said she got the confirmation page from the fax. The Athena rep gave me a fax number directly to her. She said that as soon as she entered the receipt of the authorization the results would be released to LabCorp.

I immediately hung up and called the neuro's office back to find that THE OFFICE CLOSES EARLY ON FRIDAY!

Oohhh....Mary is going to have an ear full on Monday. She obviously did not follow-up as she said she would plus did not call me.....as she specifically said she would.

I'm done playing nice. This is absolutely unacceptable that results are complete and people cannot do their jobs. I wonder how Dr. G is gonna feel about this?!?!

Partial Results

The medical assistant called last night about 6pm. She faxed the authorization to Athena and got the confirmation that their faxed received it. She said that the authorization is word for word what is on the order form that Dr G had already signed. She's not sure, but speculates that LabCorp didn't send in the lab order form when they sent the blood. Who knows? She will follow up with Athena today and call me back.

Reluctantly she gave me the results of all the other stuff. It's normal which is good and bad news. I'm glad that all appears normal so far, but this rules out the Vitamin E deficient....and there's obviously something "abnormal" about Hannah's balance and coordination.