The phone rings at 12:15am and....

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.

B'day Dress

Simplicity 2943

Hannah wanted me to make her a B'day Dress. Although her b'day isn't until next month, yesterday was school pictures so I made it last weekend. She picked out the fabric and pattern while I was shopping for curtain fabric one day. Note: pattern runs small

Hannah Update

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.

Amicalola Falls

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.

Jason REALLY wanted a good picture. ha! ha!

Will post more in a bit....Austin's having a fit.

When it rains.....

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.

2nd Opinion Scheduled

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!

Neuro Update

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.

Thanks and Update

Thanks for all the prayers!!! This morning I called Hannah's current neurologist and expressed the pediatrician's concerns about Freidriech's Ataxia. I also told the nurse about the nystagmus (jerky movement of the eyes when trying to follow a pencil) that the school physical therapist called me about on Friday. We are headed back to the neuro for a 1:40 appointment. We're worried sick and cannot wait for to get in with a new neurologist. I think he'll send us for genetic testing to rule out F.A.

In lighter news, the entertainment center is complete and it looks AWESOME!

Prayers Please

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!!

Leprachaun

Or is it a pig? Hannah saw this little project in the Highlights Magazine (I think). Here's her version of a leprachaun with grass for hair.

BTW, that's whiskers on her face. This picture was taken Monday on Dr. Seuss's birthday.

Work to be done

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!

More Prayers Today

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.

Prayers for Deana

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

EGF Message Board

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.

Alive and Well

We're all good! Don't you know to assume "No News Is Good News" with me?? :-) Thanks for checking on me Sarita and Kathy! wink! wink!

Austin's fine! He had some kind of "mystery" fever that went away as mysteriously as it came. He never really had any symptoms, other than being cranky.

So....what have I been doing for the last few weeks.....

1. 3 dr's appts - yearly GYN stuff, u/s to check a fibroid that popped up when pg with Austin, and a dental appt


2. Hosting Bunco


3. Hannah's weekly PT


4. Meeting with the school to develop a 504 Plan for Hannah to receive some therapy there. Since she got the ataxia cerebal palsy diagnosis, I think they will let us receive therapy now.


5. A gazillion trips to Jo-Ann Fabrics trying to pick out material for drapes. The den fabric is ordered, but I'm back at square one on the kitchen keeping room. Upon check-out, I discovered that I have expensive taste......$45/yd taste.....sssoooooo I'll keep looking.


6. Yard work - spring greens are planted, playground almost complete, rock bed done.


7. KID DUTY - because Jason is building a PotteryBarn-like entertainment center for the playroom. It's ready for paint....finally.

Looking ahead to March:

1. Family coming this weekend.


2. More Kid Duty so that Jason can finish the entertainment center.


3. Organize playroom.


4. Consignment sale the 2nd week in March.


5. Nephew coming for his Spring Break.


6. Start planting shrubs in the backyard.


7. Try to find a ballet class for Hannah.

Catching Up

Austin's sick and napping right now so I thought I'd take a second before Hannah gets off the bus to catch up a bit.

Above is a little rag quilt that Hannah and I made last Friday night. I got the idea from Marcia and like she suggested, I did not put any batting between the two layers. They are super cute and quick.....provided that you don't mix up the squares. Oops!

On Saturday, I rushed off BY MYSELF to Jo-Ann Fabrics and picked out some deco fabric for some curtains. It was they last day of their 50% off sale, but since I'm Miss Indecisive I didn't buy anything, only checked out some samples.

When I returned home, Miranda (our 12 year old neighbor) called saying she was bored and wanted to come over. As she and Hannah made a pillow, I worked in the EGF room.


Afterwards, she wanted to do a rag quilt herself. So....I cut out the squares and she sewed them together. I don't have a picture of that one because it's now at her house. She's using it as a pattern.

See....on Sunday, I had to go to her house to set up her mom's old sewing machine.

And.....tomorrow her mom and I will be heading back to Jo-Ann's to turn in my samples and buy the fabric for the den curtains......since I finally made up my mind. Now, I must decide on my kitchen curtains. I'll post a separate photo with some pictures when I have time. I'm sooooo ready to get rid of all this "builder's tan" on my walls. Between that and this neverending winter weather, I'm getting depressed. :-)

Btw, if anyone knows where I can find that groundhog, please let me know. I have a few choice words for him!

Wraps from MeMe

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.

Feeding the Homeless

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!

Sharing the craft

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.

Memory Boxes

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!