Raising funds for EB

The other day I received a comment from my buddy Blanca regarding raising funds for EB.  Thank you so much for asking Blanca!  You are so sweet and your comments always bring a smile to my face - but since you gave me your number in the last comment, and I didn't know if it was your personal cell or home number; I didn't want to publish it for the sake of your privacy.  I am, however, more than happy to answer your question!

So I guess there are a couple of ways to go about it.  Anyone can either donate to EB in general, or donate to specific EB families.  So .................

Anyone can always donate to DebRA - as their website states: 89.2 cents of every dollar goes towards supporting EB families as well as research for a cure.  DebRA is a great organization - for example, when an EB baby is born, they send out a care package to the family full of wound-care products to try out and other EB necessities that families just don't know about as they are bringing their new baby home. 

DebRA also offers these bracelets for purchase on their page:

The bracelets are only $1.00 a piece and they are a great way to spread awareness.  You could buy a couple dozen and take them to your church, synagogue or workplace and sell them and in turn donate the money back to dEBra.  It's win-win -- raising awareness and raising funds. 

Or ..... you can donate to EB families.  

We have a donation button for Leah on our page, and there is a support group for baby Jonah that handles donations, as well as selling these magnets to help spread the word on EB while raising money.  Sweet little Daisy accepts donations on her page as well.

Each family is different so please check their pages for info on if or how they accept donations.

We use any money people have donated so graciously to us to defer some of the cost of the things we have to purchase to care for Leah.  And of course different families allocate the funds in different ways.  Some families need to offset the cost of wound-care supplies -- which are crazy expensive. 

We are blessed that our insurance currently covers everything from our God-send of a nurse: Ann, all the way down to the dozens of rolled gauze we use every month. 

However .... there is a barrage of 'everyday' things that EB families go through like crazy that no insurance of any kind would ever cover - our biggies are: Baby Tylenol, Baby Motrin, Baby Benadryl, Aquaphor, Diaper Cream, Vaseline, Aveeno Baby Products, Vitamins, Antibiotic cream, Anti-itch creams, Eye drops, Eye ointment, Baby wipes, Hand Sanitizer, Disinfecting wipes, Stain removers; etc. 

So there you have it!! And thank you so much for asking!!

(If I find more blogs/sites of EB kids who accept donations I will edit this post to include them).

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Thanks again to everyone for their love, prayers, support and dedication -- I'm in awe of all the love coming our way.

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Today is tree decorating day!! I will post pictures of it once it's completed but I'm waiting on a delivery of some ornaments so it may not be today or tomorrow.  : )

Snow!

Welcome winter!!!  It snowed in Maryland today!

Leah's doing really good.  Her appetite has improved - so thank you to all for the prayers for that!  Her eyes continue to look great.  She did have a little case of the sniffles yesterday that has seemingly gone away.  Perhaps miraculously .....
There was about an hour and a half yesterday that she had a lot more trach secretions than what is 'normal' for her, slight snot bubbles coming out of 1 nostril, and she was a tad warm.  She was a bit fussy and she kept rubbing her cheeks (just what we need!) in a way that seemed to say 'I don't feel good!!!'.  She continued to eat well, and was still smiling ..... so I just tried to keep her warm and happy with doses of Tylenol every 4 hours.  I knew she needed to rest but had trouble getting her to take a nap. 
Now, when I'm sick - I'm a pain in the butt.  I don't want to sleep, I don't want to eat and I don't want anyone to try to get me to sleep or eat.  It basically boils down to: 'Hold my hand but shut up and don't bother me'.  (Just ask my mother or husband ... they'll tell you).  Leah had taken a tiny nap around 3:30 but had been up the rest of the evening.  So somewhere around 8:30 I decided to embrace the fact that she seems to be a lot like me and gave her a new dry diaper, wrapped her in a blankie, held her against my chest and held her little hand as we sat in the glider, rocking and listening to music.  Sure enough after about 3 minutes she was out like a light.  And slept like that until Jeff came home around 10:00. She ate well overnight for Nurse Ann and continues to seem like regular happy little Leah today!

Today Jeff and I went out to get our Christmas tree while Grandpa and Grandma watched Leah while she napped. As we were leaving Jeff said something about how we were just going to get a small 5' tree.  Yeah right.  A tree that's 8 inches shorter than me?  That ain't Christmas.  So our pretty 7' Frasier Fir is sitting in the garage until tomorrow.  Then I hope to set it up in the living room and then let it settle overnight so I can decorate it on Monday.  I LOVE to decorate trees and last year I was starting to feel too uncomfortably pregnant to care about it so I have to make up for it this year!


Here's some new pictures of Leah over the past few days:

'Gimme that darn remote Dad .... I don't like football'.  (I told you she's like me)

Thank you again for praying for her appetite, and continued good luck with her eyes!  Our days would be very long without feeling the love and prayers coming in.

Eye Update

Just a quick update on Leah's eyes since we just got back from our appointment with Dr. V (and Jeff is out picking up lunch for us).

Leah's eyes look fantastically fully healed and beautifully all better!!!

Hallelujah!!

Both eyes look terrific; not just the old abrasion ..... and the newer abrasion doesn't just look 'a little bit better' .... they both look completely healed. 

We have to continue with our regimen of drops, ointment, and the cool mist humidifiers to keep it that way - and I will; faithfully.  I don't want her to feel that pain again and I need to keep seeing those beautiful big blue eyes.

Christmastime is here........

First of all - I want to remind everyone to watch the Discovery Health Channel at 9:00 PM (EST) tonight to watch 'Truth Be Told: I Have a Special Needs Child' which will feature the Sheridans and their beautiful daughter Samantha.  Sam has RDEB. 

Here is her CaringBridge site

As for the Christmastime part of my post .... last night after Leah's bath, trach change, trach collar change and bandage session, we took her over to Grandma and Grandpa's house to see their backyard Christmas display.  We figured we had to do it on a night when Jeff was home, it fit into her eating schedule, and it wasn't raining or 30 degrees outside.

Leah was such a good girl the whole time.  She got to see all the pretty lights, and hang out with her lil cousin Nathan.

You can't see it in any pictures but her sleeper outfit said 'Snow Cute'.  Haha.  She also had double socks and 2 big flannel blankets wrapped around her.

Daddy got artistic with the pictures he took:

I'm not so artistic:

Leah and Nathan talking about this 'Santa' character everyone keeps telling them about.

P.S. Can you tell Jeff looks like his Dad?

"Ok, I'll unwrap this one .... you watch and see how it's done"

My little star.

Grandpa, Nathan, Grandma and Leah.  Nathan was more interested in the TV than by what was going on.

Baby covered Grandma.

We started a tradition of the Advent Calendar .... and yesterday was the first day!! So here is Leah with her calendar, prior to opening door 1.

And here she is after we opened it ...... I can't say she was overly enthused about the whole thing.

Some new photos

Hi everybody!! I just wanted to post some new photos of the little girl since her eyes are looking fantastic and she's been quite the happy little butter bean lately.  And again, pardon the quality of the photos.  When the flash goes off it makes her look soooooooooo red!!  But without the flash the photos are too dark. 

She didn't eat so well this past weekend .... then again it was our weekend without Nurse Ann and Leah gets thrown off her schedule when that happens and typically doesn't eat so well.  It doesn't seem to be a teething issue .... or an 'I'm not feeling so well' issue .... it's just an 'Eh ... I've eaten enough ... so get the bottle outta my face, lady' thing. 

So if everybody could say a little prayer for her appetite to improve - that would be great.

The Leah smirk.

And here she is with her storybook glove.  It came with a book and you can attach little velco figures like Humpty Dumpty to it while you read the story.  Daddy decided to put it on her head.

"You like my hat? Mommy says it's from Paris"

And here she is with her Manny from Ice Age.  Apparently his tusks and trunk are the perfect teethers.

These pictures are probably the best shots of what her face really looks like now.  Not clear ... but certainly not quite so red as it looks in the flash photos. 

Look at those eyes!!!

And here she is checking up on her blog, and Jonah.  I always tell her about her buddy Jonah so I figured they should meet, if only through the magic of the internet.

"What's up my EB brotha?!"

"Hi Mommy .... I love you ... gimme kiss!"

I took this with my camera phone and had to adjust the color, and uh, I didn't do so well ..... I just wanted everyone to see how nice and open her eyes are nowadays.