DARYA
NADINE 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.
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.
I don't have but a couple seconds to post, but wanted to update you on what the new neurologist said to us yesterday. We liked him a lot and will be under his care fulltime now.
He validated our concerns will be scheduling tests that range from genetic to metabolic. He feels that the nystagmus is a new symptoms because it's bad enough to be seen by anyone that exams her eyes. I will be making an opthalmologist appoint ASAP. He also added dystharia in her speech to the list of symptoms. Jason mentioned something to me about 1.5 wks ago and I told him that he was just looking for symptoms. He describes it as Hannah having to concentrate more on how she says things to get the words out correctly.
All of this leads the neuro to feel that something is going on with her cerebellum. He concluded by saying that "we are in Atlanta and have a great medical community. Know that we will be here for you in whatever this turns out to be."
Jason and I are beside ourselves with worry. I have cried nearly all morning. I have having great difficulty coming to terms with why another of my children have to suffer.
It seems that life passes me by these days in a fraction of a second. However busy (read tough at times) things seem, I truly dread the teenage years. Last week, in the midst of all the worry about Hannah & dad's cancer diagnosis, we played host to our nephew and 3 other 17-18 year olds. We survived.....just barely. :-)
Below are a few pictures of our Amicalola Falls adventure taken with my new digital camera. We bought it without hardly any research after my other one croaked. I am VERY pleased with the pictures though.
Dad was diagnosed with bladder cancer on Thursday. The surgeon feels that they caught it very early and that he's hopeful that the tumors have not penetrated the bladder lining. If so, they will re-scope him again in 3 months. If not, chemo is involved. We won't know for sure until the pathology report comes back in 2 weeks.
About 3pm yesterday the 2nd neurologist's office called. We were unable to get a sooner appt with him, but can see his partner on Tues at 2:15.
About 5:30 last night, the medical asst to the current neurologist returned my call. She was still unable to locate the exact blood panel on Emory's forms, but found it on Athena's. In our conversation, she said that she unable to spell Freidriech's at first, blah, blah, blah....
Glad we're going with the 2nd opinion!!
Meanwhile, Hannah's home from school sick with a fever and a head cold. She seems to be getting better and we will go camping at Amicalola Falls tomorrow (no school on Friday) if she continues to improve.
I'll let you know more when I know more. Thanks for all the prayers!
He's not certain that it's F.A.; said that she in fact does have some of the symptoms, but not all. It's a good thought so he's going to have a full Ataxia Panel run. He couldn't figure out how to order it on the lab slip so is calling us back. He said that it used to have to be sent to Houston, but now Emory could do it. We should hear back from him in 24 hours to schedule the blood draw.
Depending on what this says, he wants to do the nerve test under sedation.
She does have nystagmus, but he said some people just have them and gave us names of a few pediatric opthalmologists to see.
We feel a bit better since he doesn't think the F.A. diagnosis is glaring, but any form of genetic ataxia is progressive. I'm just hoping that it's not as bad as the F.A.
I hesitate to post today, but figured we could use all the prayers we can get right now. It's about Hannah and I'm not even sure where to start. I pray all this worry is for nothing.
As many of you know, 4 months ago the neurologist diagnosed Hannah with Ataxia Cerebral Palsy even though her MRI was normal. Typically, some kind of brain injury shows up on the MRI pointing to CP.
Last week, she had a big fall at school requiring her to go to the school nurse. I've been noticing more tremors in her hands. In October when this all started, you couldn't convince me that she was tremoring. Now I see it frequently.
Tuesday we had a follow-up with the neurologist and we left confused as ever. He's now saying that he's not certain it's CP and may be neuropathy. He also said that he could not get reflexes from her legs at which point I remember that the new pediatrician told me the same thing back in November when Hannah was so sick.
So, not being comfortable (ya know...the mommy instinct thing) with the neuro appt I made an appointment with the pediatrician yesterday hoping that she would help me get a 2nd opinion with a different neurologist.
We are now worried sick! She is concerned about something called Friedriech's Ataxia. It's a recessive genetic disorder and is progressive. Initial symptoms begin when a teacher notices abnormal coordination. Another first symptom is lack of leg reflexes. It progresses to heart disease, diabetes, scoliosis, and the inability to walk. Mean life expectancy is 35, according to some of the info that I found online. At this time, some new and promising studies are being performed.
This morning I called the neuro the ped recommended and can't get an appt until May 18th. The ped is trying to get one sooner. If she can't, I'm going to beg for the blood test to rule out F.A.
In the meantime, please add Hannah to your list of prayers. Thank you!!
I'm slowly buying fabric for the new curtains. I'm quite indecisive and have expensive taste....thus, having to start over from square one. I picked out $45/yd fabric. Ummm....not gonna happen. :-)
Above is what has been purchased so far. The dark material will be used for the windows in the den on the left & right of the fireplace. I will make plain panels. One rod (only had one 40% off coupon), the lining and main fabric has been purchased. We will paint the fireplace wall a dark brown.
The lighter striped fabric is for the kitchen & keeping room. I will do scalloped-typed valences on all 6 windows. They will be lined in green (see the scrape of fabric lying on top of the bolt). That green will also be used to make a roman shade for the bay window. During the summer the sun beats in that window and we're unable to eat at the table in the late afternoon/early evening. The entire kitchen & keeping room will be painted green.
I still have to order the green fabric. I went to Jo-Ann Fabrics yesterday to pick up the striped fabric. It's on back order until 9/30 and I bought all they had. I think I may be a yard or so short. They didn't have enough of the green in house so I thought I'd order it on-line and have it shipped for FREE to my house vs. ordering at the store and paying them $15 to ship it to the store....then having to lug the kids to the store to pick it up. But....as fate would have it, I can't find it on-line. Soooo.....back to the store I go next week. I hope they still have the 40% off sale running.
While there I found some fleece blankets for $.75 each. I picked up 5 and will try to crochet around the edges.
Jason should be close to finishing the playroom entertainment center this weekend and then it's my turn for some sewing!
Deana meets with her new dr's at MD Anderson today (in about 20 mins actually) for the first time. Please pray for a healing course of treatment! Above is a picture of Deana with her 2 young sons. You can follow along more depth at her caringbridge site.
Dear friends out there reading, please add my internet friend Deana to your prayers. Several months ago she was diagnosed with Burkitt's Lymphoma. It's rare, but the odds of beating it were in her favor...but things do not look well now. Deana is a mom to 2 young boys that need her badly. Below is an update posted by her husband a few days ago.
Dearest family and friends,
Deana and I met with her doctor today and received some disturbing news. Apparently Deana's cancer is not responding at all to the chemotherapy treatment she's been receiving these last several weeks. It has started to appear on the right side of her face causing a numbing sensation that Deana describes as 5 novacaine shots after a dentist visit.
Deana has tried two different chemotherapy protocols and is now going to start a third (possibly final) no later than Monday. We will know in as little as two weeks if it is successful.
To our shock and utter dismay, the doctor is not optimistic about this round of chemotherapy, but given the odds are greater than zero, we charge forward. We will not give in.
Tomorrow, Deana's oncologist and I will each be contacting medical oncologists at M. D. Anderson Hospital in Houston, TX. Apparently their lymphoma treatment is the most progressive and if there are applicable clinical trials with experimental drugs -- should it come to that -- that hospital will be leading those efforts.
Deana wanted me to let everyone know that while we are hopeful, and are trying to remain positive, that the doctor did tell us that given the aggressive nature of Deana's cancer, we are dealing with just a matter of weeks for Deana if not addressed. He has encouraged us to contact Hospice.
I apologize for the impersonal nature of this update, but wanted to make sure to keep you all informed.
Please keep Deana and our boys Zane and Zachary in your prayers. It means so much to us. We need them now more than ever.
On a much happier note, when asked last week by his teacher how Zane's parents met (apparently a Valentine's Day exercise at school), he responded:
They ate chocolate donuts, brown donuts and chocolate donuts and just fellin love.
Priceless. This hangs on our refrigerator now.
Please, please take the extra moment to hug your spouse and kids today and often.
Either I or Deana will post an update just as soon as we know more.
God bless you all,
Jack
One of the MANY things on my "to do" list for EGF is create a message board. I have no idea what I'm doing, but I made one. Check it out if you'd like to join some crafting discussion......or should I say, more crafting discussions. I really needed a way to post updates and needs of EGF without constantly changing the main website, which I do not have access to yet.
Looking ahead to March:
One of my sister's and I gave Mom a new sewing machine for Christmas. She used to sew (along with my grandmother) quite a bit when we were children. Each year she'd make us matching Easter dresses.
Mom told us just to buy a cheap machine from Walmart, but I wouldn't have it. So, I found what looked like a decent one on Amazon. So far, so good.
The above wraps are 3 of the 13 that she sent and anywhere from 7" - 12" square. Piedmont in Atlanta really likes these little wraps, so I'm thankful that Mom sent a few.
I can now put a check by something that I've wanted to do for years. Yesterday, Jason and I helped at St. Francis Table, a soup kitchen that has been feeding approx 500 every single Saturday for the last 27(?) years. Although it was our first time, it will not be our last. For those of you that have never done it, please add it on your list of "things to do."
As part of Jason's company's "Cares" program, his facility collected coats and socks. They also made and donated 500 sandwhiches. We arrived shortly after 7 am and left after noon when the last guest was served.
It was an amazingly heartwrenching experience. The vast majority were those that your mind's eye imagines as homeless, those that have been homeless for years. Then there were those that appeared to be newly homeless, possibly caught up in the struggles of these tough economic times. And, there were families......families with young children.
The children got to me.....their smiles even though I'm sure that are embarrassed, so well behaved as they sat and ate their meals.
One young woman also tugged at my heartstrings. Many brought in plastic containers and we filled them full of soup to go. Others brought in bottles that we filled full of tea or water. This particular woman looked new to homelessness. I did not see her say a word to anyone. She sat quietly and "secretly" stuffed her bag full of bread as if she was doing something that she shouldn't. Right before she left, she asked for a stack of napkins and quietly stuffed all of them in her bag. I'm pretty certain that those napkins won't be used to wipe her hands.
One white woman and black man sat down together and they broke out with the most beautiful song. They harmonized so well together....really!! Then, they devoured their sandwhiches and soup.
We learned that caps and socks are needed all year long! Diapers are often asked for, but rarely donated. That made me think....what about femine products for the ladies. One lady said she needed underwear. There was none to give her.
As I sat with my hot coffee, grits, eggs, bacon, and fresh biscuits this morning couldn't help but think of those that are so less fortunate than I. God Bless!
MeMe (my mom) gave Hannah a Hello Kitty sewing machine for Christmas. She really wanted a pink one, but I refused to get her a cheap toy one. This one is by Janome and works pretty good. It's a bit stiff, but for a child it's a good first one.
This weekend we worked on potholders. We finished one, but it's a bit too small. I'll edit this post when I tweak the pattern and get the size that I like. They'll be Valentine's gifts for MeMe.
My sister informed me that I needed to update my blog. Since I have no crafting of my own to show, here are the 22 memory boxes that Jason's co-workers in Chicago made. They are LOVELY!
Simplicity 2943
