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!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!
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!!
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!!
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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.
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
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.
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.
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.
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!
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.
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?!?!
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.
I've been leaving a message for the neuro's medical asst since last Friday. I've left 3 msg's to be exact. Today I decided to call Athena Labs to see if the Freidreich's Ataxia test is complete. Guess what? It is....BUT......
On April 9th, Athena sent Labcorp a authorization to release the results that had to be signed and returned to Athena. Labcorp did not sign it. I have now given Athena the neuro's fax to have him sign it.
But, once the authorization is faxed to Athena, Athena will fax the results to Labcorp who will then fax to the neuro.
I mean really........ the test is complete. Why can't the results be sent to the ordering neuro? Why the blankety-blank-blank does a gazillion faxes have to take place?
Anyone what to predict when we actually get the results?
Ok, Ok....I know....been gone too long without posting. Thanks everyone for checking on us!!!
We're still waiting (quite impatiently, I might add) for Hannah's test results to come back. Monday was 2 weeks since the FA test and it should take 3-4 wks for the results. :-( She's had a few bad falls the last couple of weeks, too. Praying for results soon!!
She had a pediatric ophthalmology appointment and all is fine with her eyes. She was, however, EXTREMELY mad that they dilated her eyes. I couldn't talk sense into her AT ALL. She's also had another croup attack. I'm starting to wonder if we need to add a pulmonology appointment on top of everything else. The attacks really freak her out and even cried, "I'm gonna die" this time.
Besides all of that, we've been....
To the beach
Celebrated Easter
Started Ballet/Tap
Had Hannah's 6th Birthday Party
We've also done a good bit of yard work. We've planted peach trees, apple trees, a fig tree, grapes, 2 black berry bushes, and the garden. I'll take pictures later.
Next up is all the landscaping for the beds. We hope to do that in a couple of weeks.
I'm SUPER behind in just about everything....EGF stuff, taking down Easter decorations, laundry, and sending thanks to all that have sent Hannah well-wishes and b'day gifts, AND Easter presents for both kids. You guys are the GREATEST!!
Ok, I must close now. It's taken me probably 2 hours to post this. Austin's down for a quick nap so I need to try to catch up.
I'll let you know something when we hear something from Hannah's bloodwork.
and 2 more vials of blood to go. Hannah did really well this morning. The lady was able to get all 8 vials of blood from Hannah. The Emla cream was WONDERFUL! Hannah freaked when it was her turn, but once stuck she said, "oh....that didn't even hurt." Monday is going to go so much better because she knows that she'll survive without hardly any pain.
In other news, both kids are now running a fever. Hannah had a croup attack Tues night. Austin had 103.1 temp this afternoon. I took them both to the ped since we're headed out of town for a week and wanted to make sure it's nothing but viral.
While there, I snuck a quick peek at the neuro's letter to the ped. :-) It was 2 pages long and I only scanned 1 paragraph. Basically it said that his primary concern was Freidreich's.
We're ready, but I'm not so sure that Hannah is. In the morning and again Monday morning, Hannah will have a total of 10 vials of blood drawn. The neurologist called in some Emla cream so maybe we can lessen the trauma. She HATES needles so this is a HUGE deal for her.
Tomorrow the tests with LabCorp will be drawn. These include many things like the basic CBC, cholesteral, amino acids, some tests for muscle enzymes, to name a few.
Monday is the genetic test for FA that has to be sent off to Athena. It will take several weeks to get back.
it's Hannah's neurologist. Holy Smokes!! First of all, I about jumped out of my skin and when I saw that it was a local number I thought that it was a wrong number......but, I answered anyway. IT WAS HANNAH'S NEUROLOGIST at 12:15am!!!!
I spent hours on the phone yesterday afternoon finding out that the only lab in the country that runs the Freidreich's Ataxia test is Athena AND they are (of course) out of network. The neuro's office is filing for a predetermination with UHC which could take up to 30 days. THAT IS NOT ACCEPTABLE!!!
So......I called to find out that we have out-of-network coverage with a $800 deductible + 40%. Fine, ok.....we'll pay it. We have to have some answers.
Well.....Dr G is out of town with his Mom that just had bypass surgery. He was checking in with his office and wanted to make sure that we knew "in the world of managed care that if the ins cannot provide you with a name of someone that runs a particular test (which won't happen since Athena has this test patented) that they must honor it as in-network." He told me to sit tight, "that I know you want this done ASAP", but that we'll get coverage. Well.....I can't sit tight.
Jason is supposed to pick up the labwork prescription today. There are probably 15 different tests scheduled for Hannah, but only one with Athena. The rest are with LabCorp.
