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.

EB family featured in Discovery Channel show

Next Wednesday, December 2nd at 9 PM EST, Discovery Health Channel will be airing a special titled "Truth Be Told: I Have A Special Needs Child".  One of the three families featured on the show will be the Sheridans.  Samantha Sheridan is a tremendously brave and awesome 14 year old girl who lives in Florida.  She has just undergone the stem cell transplant procedure that Dr. Wagner at the U of Minnesota has been doing for a few years now.   

This special has previously been scheduled to air several times and the network, for some reason or another, always pulls it off the schedule at the last minute.  So hopefully I won't have to blog a retraction of this ..... (ahem ... Discovery Channel!!). 

I was watching a DVR'd episode of 17 Kids and Counting this morning when I came walking back into the living room with some of Leah's laundry. I looked at the TV, gasped and said "That's Sam!!!"

I was so excited I had to rewind the show and snap a photo:

I hope everybody can watch the show and learn about our beautiful hero Sam, and her amazing family.

In other news ....................

Can you tell Mommy is super duper excited about Leah's first Christmas?!  Yes, she has 3 stockings.  I figured she's been such a good girl that Santa will need more than 1 to fit all her goodies in.  : )

What I am thankful for

This year I am thankful ............

for my Leah; my beautiful little butterfly girl Leah and

for every breath she takes

for every cuddle we have

for every smile for gives me

for every soft blonde hair on her head

for every tear I dab away

for every booger I blot

for every line of drool I grab

for every diaper I change

for every bottle she drinks

for every second I watch her sleep

for every slap of her hand

for every finger she grasps

for every little toe I kiss

for every book we read

for every toy she discovers

for every prayer for her that has been answered

for every day .... for every minute .... for every second that God blesses me with and allows me to spend with my precious little pearl of a baby girl: Leah

Freshly bathed and bandaged and 100% pooped (and 200% gorgeous)

Happy Thanksgiving everyone!