Blog Rebirth

Hello all!

As promised, Mrs. Cuddles came through with another gorgeous blog.  As per my personality I wanted to keep it pretty simple, with just a shift in theme from 'praying for' Leah to 'remembering' her.

I still have some work to do on the gadgets ..... just getting everything copacetic and orderly.  But I'm more than happy with how it looks!

There is a new button for our page, complete with the 'Remembering Leah' theme.  I added some new buttons that will take you directly to the donation pages for both DebRA and EBMRF.  I will keep my 'Avon sales for DebRA' button as updated as possible with a current dollar total listed under that button. 

I wrote up a new 'About Us' blurb for any newcomers who wander here and are curious about what is going on.  There is a banner that will automatically update any stories of EB in the news.  And in the future I hope to include a lot of information for new parents of EB babies (just things we learned the hard way; the importance of biopsies, tips and tricks with dressing changes, etc.) - though I will probably start a new blog for that and just link to it here on this one.

Tomorrow is my first day of work!! I am so excited and happy to be working again.  I'm not nervous, since my boss is an amazingly nice lady and going back to the American Red Cross is kind of like returning home again.  I'm just anxious to start and learn my new job and give it my best. From what I understand it'll be similar to the first position I had with the ARC (the Red Cross loves its acronyms!) in that I won't have to communicate with donors over the phone.  Don't get me wrong, I love our donors but being a counselor for them was just not my cup of tea.  And after my job as 'Leahs 24/7 Mommy/Nurse/Bandager/Trach Suctioner/Force Feeder' - anything will seem easy, and the 'little things' that I used to think were so important won't seem so daunting.  I'll never have a job as rewarding as being Leahs Mommy but I know she's happier with her job as full-time guardian angel.

Federal Funding for EB Research

Hi everyone!

Just a quick note ..........

Patrice forwarded an email to me regarding a possible $15 Million EB research funding opportunity!  It literally only takes a few minutes of your time. 

1. Go here: http://www.congress.org/congressorg/directory/congdir.tt

2. Find your representative and send them the following info:

On behalf of all people living with Epidermolysis Bullosa (EB), every military burn casualty, and the thousands of veterans suffering from diabetic ulcers, we respectfully request that you provide funding of $15 million for EB research within the Congressionally Directed Medical Research Programs (CDMRP) in the fiscal year (FY) 2011 Department of Defense (DoD) Appropriations Act.

A $15 million appropriation to fund EB research within the CDMRP in the FY 2011 DoD Appropriations Act would move us closer to finding a cure for this heartbreakingly painful and often life-threatening condition. It would give hope to the military and civilian families struggling to find effective treatments for their EB-afflicted children; help provide relief to the millions of Americans suffering from diabetes-induced ulcers; and contribute to advanced care for U.S. combat veterans recovering from thermal or chemical burns. Thank you for your consideration of this request.

The way that I did it on the website ... once you enter your info into the site's form, it'll keep it for the following reps and all you have to do is copy and paste the above text into each 'comment' field.

Here is the actual email sent by DebRA:

Dear Debra Friend/Family:

Debra urges you to act now! A Member of Congress has asked us to pass on this very important message to you. We only have three days to act and cannot delay. On behalf of all people living with EB please call, email, or fax your local Senators and Representatives asking them to sign on to the EB appropriations requesting $15 million in funding for EB Research.

For contact information for your local Senators and Representative(s), please visit: http://www.congress.org/congressorg/directory/congdir.tt

You can also email or fax the following message to your Senators and Representatives:

On behalf of all people living with Epidermolysis Bullosa (EB), every military burn casualty, and the thousands of veterans suffering from diabetic ulcers, we respectfully request that you provide funding of $15 million for EB research within the Congressionally Directed Medical Research Programs (CDMRP) in the fiscal year (FY) 2011 Department of Defense (DoD) Appropriations Act.

A $15 million appropriation to fund EB research within the CDMRP in the FY 2011 DoD Appropriations Act would move us closer to finding a cure for this heartbreakingly painful and often life-threatening condition. It would give hope to the military and civilian families struggling to find effective treatments for their EB-afflicted children; help provide relief to the millions of Americans suffering from diabetes-induced ulcers; and contribute to advanced care for U.S. combat veterans recovering from thermal or chemical burns. Thank you for your consideration of this request.

Please forward this message to your friends, neighbors and family. Your support can make a huge difference!

Thank you for your support,

Dystrophic Epidermolysis Bullosa Research Association of America

Also ....... did everyone see the video of Elly on her blog today?!?!

Cutest thing ever

I could watch it all day ..... then again I guess I have a soft spot for gorgeous little baby girls.

 

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Job news and website plugs

Hi everyone.

I apologize for the still somewhat funky look of the blog. Mrs. Cuddles will be available to help me out with it this weekend!  I know with her touch it'll be back to it's glory. 

On to other things ............ I am happy to announce that I am no longer unemployed!  As of next Monday I will start my new job with the Red Cross at its National Headquarters in Washington DC.  I used to work for the Red Cross in Philly .... from 2007 until just last year when I had to leave because of our move here to Maryland.  So I'm happy that after 10 months I'm able to come back to my 'family' that is the Red Cross.  So this week will be the last of my 'vacation' but I'll be glad to get back to some kind of normalcy .... and getting a paycheck. 

Awhile back when I wrote about getting ready to start applying for jobs again, super nice Kellye offered to help me out with my resume.  I wanted to give her a quick plug here since she was so great to help me out.  So if anyone out there is looking for a resume makeover, please visit her site: Professional Advantage Resumes.

And ........ I got an extra special gift in the mail yesterday.  Adrienne is one of my favorite EB Moms; she's been super great with emailing me and letting me vent these past few months.  Adrienne is Caroline's Mommy .... you can read about Caroline here.  Adrienne has a friend named Chris who makes bracelets for bereaved Mothers - and she was kind enough to coordinate everything and have a bracelet made and sent to me.

I love it.  It has amethyst beads for Leah's birthstone, her name is adorable baby blocks, and a butterfly charm. 

Here it is:

Please visit Chris's online store to check out her gorgeous creations.  I think I'm going to pick myself up a key chain sometime in the near future. 

 

It was a beautiful day here in Maryland so I took Sammie over to the pond for another walk.  She thinks the geese in the pond are the strangest things ever .... but she wants to get to them:

She only wants them when they're in the water ..... she walked a mere 3 or 4 feet away from a couple of geese sitting on the edge of the pond and she didn't show the least bit of interest.

And here she is when we got home ..... I thought the walk would tire her out, but no, she just wants to play:

Typical puppy.

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Pardon the mess .... buttons!

As I said in my last post, I'm working on making over my blog a bit.  However, I've called upon precious Mrs. Cuddles (who redid my blog before) to help me with it because I've come to the realization that I don't know how to do it myself.  I tried earlier and uh ..... if you saw the blog you'll know what I mean.  It wasn't awful but it wasn't what it should be. 

But, while attempting to learn how to do some of these blog things on my own, I stumbled upon a button-making site and that, I understand.  (Somehow).

So to the right you'll see some of the buttons I made today for just some of my EB buddies. 

I think they're pretty nifty - and gosh darn it I think they're fun to do.

So ........ I'm thinking of this: if anyone out there would like a button, and would like me to try to make you one, I will offer to do buttons for 'free'.  'Free' that is, because it'll be in exchange for a donation to DebRA.  Interested?? Shoot me an email at MegGehring(at)Gmail(dot)com and I'll give you the details. 

: )

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Leah at 1 month & Genetics

One year ago today, I took this picture of Leah:

I love this picture.  Even though this isn't what she looked like at the time.  At no point other than the exact second I took this picture did she look like this.

At one month old she really looked more like this:

And she was doing a lot of this:

(That's yawning - not crying.  She was the perfect baby and rarely cried.)

She was so beautiful.  And at just one month old we had no idea how bad everything would get.  Her skin was in pretty good shape.  Her face, as you can see, was perfect.  Almost all of her finger nails looked normal.  She ate well, breathed well - and I think, I hope, she wasn't in much pain.  I would never have thought that over the next year we'd watch her skin worsen, a trach get put in, corneal abrasions, eating problems, pain, more pain and even more pain.  And I definitely never would've thought that one year after taking that picture she'd be gone; 2 months, 1 week and 3 days gone. 

There is no segway out of that so I'll just move on....................

On Monday we had our genetics consultation at Children's Hospital in DC.  Overall it went great.  We didn't have to talk about EB, or even Leah really.  Our counselor had done her research and knew the answers to all our questions.  But best of all - we learned that because of the blood drawn from Leah back in August, we know what genetic mutation(s) we carry, and therefore, what we would look for when we choose to have another baby. 

If I had just gotten those darn blood test results earlier I would've felt much better.  What happened is that they were supposed to be mailed to us and I never got them.  I emailed the dermatologist asking for them and she said she'd get them out to me.  Still nothing.  Then when we were in the hospital at the end of December, I asked Leah's dermatologist for them again.  The day after I spoke to her was the day Leah passed, so then it was the last thing on my mind.   But when I was told about the results, we learned that the test didn't show whether Leah's JEB was Herlitz or Non-Herlitz (though, lets face it - she had Herlitz).  So from that I was assuming that the test had been a failure on the 'learning things' front.

But, as I said, the test did indeed show our 'defect' as DNA givers to our offspring. 

Leah was heterozygous positive for R42X and R635X mutations in the LAMB3 gene.

I passed the info along to Sara, my EB-knowledge guru and she looked it up in her mutations book.  Apparently we carry a common mutation.  Sara's book showed that: in a study they did in the mid 90's; 47 cases were LAMB3 mutations, 45% of those contained the R635X mutations and 7% contained the R42X mutation, and 3 with a combination of those two mutations.

I'll do a second post on where we go from there - and what this info means for our future.  But, as you can imagine it's not simple and so I'm sure I'll have a lot to write about it. 

Also, I may try to revamp my blog in the next day or so.  I've been wanting to change it from a 2 column to a 3 column blog for awhile so if I can get my blog-learnin' on and do it - I'll do it.  But ..... if you should happen upon my blog and find a big blank space .... that'll be why. 

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Long lost (not really though) video

Just a quick post of this video Jeff and I uncovered from our Leah-files. This was taken on the day of Leah's Christening. Aunt Penny's camera took some great photos and this great video.

Signs of Spring

It's no secret that this winter sucked for us.  So I'm glad to see the signs of spring around here.

Like:

Hannah lounging and grooming herself on her perch in the sun

Sammie tired on the couch after her first ever trip over to the pond for a walk

Random flowers growing in the mulch bed around some of our trees out front

And Jeff being able to change the oil in my car while wearing his oil-changing T-shirt

Avon earnings for DebRA

OK, so first of all let me announce (finally) the total we were able to raise during my online Avon event where I'm giving 100% of my earnings to DebRA as part of Jonah's auction. 

The total is .............................................................................

$197.46

Not too shabby huh?

Which leads me to my next announcement ...... so the other day I received an email from a very nice lady who had just visited my store.  Technically the event for Jonah was over but she wanted to know if there was any way I could tack on my earnings from her sale to the money that would be going to DebRA.  'Absolutely', I thought.  And, why not?  I know the word from the auction is still hot and so of course I have no problem doing that.  But then I thought, when would it stop?  Hmmmmm, how bout never?

What if I always gave 100% of my Avon earnings to DebRA?  That'd be pretty cool - and I'm pretty sure there's a little angel named Leah who would think it was pretty groovy too.

So yes, that's what I'll be doing.  My Online Avon Store will be dedicated solely to raising funds to donate to DebRA.  

And of course, if you just want to donate to DebRA - by all means please do so.  But if you're a current Avon customer, or you tried it out during the online event and liked the experience, please continue to shop my store and do a little bit to support DebRA.

Thank you!! 

Dolls for Leah

Months ago, my Mom ordered a Baby Be Blessed doll for Leah.  It was meant to be (possibly) a birthday present.  She ordered a Leah Rose doll, with blonde hair.  Well, it arrived here at its new home on Monday.  Isn't she just too precious?  Almost, but nowhere near as precious, as the original Leah.

For those who don't know, Baby Be Blessed dolls are handmade with lots of love and come with a scripture patch of the customers choosing.  My Mom chose this for Leah:

Also on Monday, another Leah doll made its way here to our doorstep.  It's kind of a funny story so, indulge me please.   Every once in awhile I seek out blogs which link to mine, in hopes of finding other stories like ours, or just cute blogs in general.  I Googled 'Little Lady Leah EB' and a link to a Crocheting forum came up.  'Huh?!' I thought ....... until I saw the post.  There is this amazingly awesome woman named Michelle in California, and she can crochet like the wind.  She makes these little angel dolls for parents who have lost their babies.  Somehow she found my blog and decided to bless us with an angel doll for Leah.  The doll was meant to be a surprise (i.e. I just open my mail one day and find this little creation).  But impatient me decided to message her on the forum to thank her and say how wonderful I think she is.  So then it turned into this 'It was a supposed to be a surprise but it's ok that it isn't because now we got to know each other and blah blah blah' thing.  She said that Leah is the oldest baby she's ever made an angel baby of, so it was a challenge to depict her - but boy did she do it.  Check it out:

Bear in mind that it is crocheted.  Isn't that incredible?  Her legs are posable .... she has fingers .... how do you crochet a tiny doll finger?!  Oh and I just put her on the candle to get a photo in good light ...... she won't live there and won't be near the candle if it's lit.  (FYI).  What kind of firefighters daughter would I be otherwise?! ; )

But look ...... Leahs ever-present binkie:

and the curls!! Her little wispy blonde hair and those adorable curls on the sides. 

And of course, her wings:

Michelle: Your hands have truly been blessed from above with the ability to do this, and your heart is so pure to give these priceless creations to the parents who treasure them.  I love my angel doll, thank you.

And of course, thank you to Nana for the Baby Be Blessed doll ........ I know Leah would love it.