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Sunday, December 19, 2010

Happy Holiday's!

I didn't get around to Christmas Cards this year or getting a family Christmas photo taken...so I made our own E-Christmas Card to send to family and friends!


We hope you and your families have a very Merry Christmas and a Happy New Year!!

Wednesday, December 15, 2010

EB on TV

There will be a special on TLC tonight about EB.  It's called 'My Skin is Killing Me' and will feature 5 year old Payton, who is the 13th patient to undergo a bone marrow transplant in the hopes of curing his EB.


It is on today, December 15th at 8pm (est)

You can read about it on TLC's web site here

Monday, December 6, 2010

Happy Birthday Garrett!!!





Hard to believe our baby would be 6 years old today?!?  Time sure does go by fast....I often wonder who he'd look like today; more like Sami or Summer.  My guess is Summer since she looks like Joe more than me and Garrett looked a lot like Joe at birth.   He has soooo many friends up in Heaven now.  It's so sad to think about how many lives have been cut short by EB just in the past 6 years....too many that is for sure.

It was a pretty normal day here (other than the weather- it was in the 30's this morning and 50's most the day and tonight we are under another freeze warning!!)

I took Summer to school, then picked Summer up; then got Sami a couple of hours later.  Did laundry, the dishes, tried to take a short nap...emphasizes on TRIED.

For dinner I made the usual spaghetti (Sami's favorite) and cheesecake for dessert:-)

The girls got their gift "from" Garrett...not sure how long we'll continue to be able to convince them its from Garrett...Sami keeps wanting to know how he can send presents from Heaven... but they all got their much wanted Zhu Zhu pet.  The cats think those things are GREAT!!!  (the girls do too!)

 After the gift opening, as tradition, we built a gingerbread village this evening.  The nice part about a village, you get 5 smaller building vs 1 big one, so everyone has a building to decorate = LESS FIGHTING!!

Here are some pictures of the final product.





Then it was clean up time and bed time:)

I'll probably jinx myself since there is still 1 hr and 10 minutes left for today but i'd have to say this was the (best) easiest birthday so far....maybe it was because it as a typical day around here and I didn't have much time to really think about things?  Maybe its because we found out last month that the baby we are expecting this spring is a boy and maybe someday we will get to celebrate his birthday WITH him?  We are hopeful at least...

 I wasn't sure which song lyric would be best for today.....until I was waiting in the car for Sami to get out of school and this song came on the radio.  I first heard it over 12 years ago shortly after a co-worker was killed by a drunk driver leaving behind a fiance and 9 month old daughter.  It really seem to fit their situation at the time.  But works for anyone with a loved one in Heaven...


"Holes in the Floor of Heaven"
~By Steve Wariner

One day shy of eight years old
Grandma passed away
I was a broken hearted little boy,
blowing out that birthday cake

How I cried when the sky let go

with a cold and lonesome rain
Momma smiled said don't be sad child
Grandma's watchin you today

'Cause there's holes in the floor of Heaven

and her tears are pourin' down
that's how you know she's watchin'
wishin' she could be here now
And sometimes if you're lonely
just remember she can see
there's holes in the floor of Heaven
and she's watchin' over you and me

Seasons come and seasons go

nothin' stays the same
I grew up fell in love
met a girl who took my name

Year by year we made a life

in this sleepy little town
I thought we'd grow old together
Lord I sure do miss her now

But there's holes in the floor of Heaven

and her tears are pourin' down
that's how you know she's watchin'
wishin' she could be here now
and sometimes when I'm lonely
I remember she can see
there's holes in the floor of Heaven
and she's watchin' over you and me

Well my little girl is 23

I walk her down the aisle
it's a shame her mom can't be here now
to see her lovely smile

They throw the rice

I catch her eye
as the rain starts comin' down
she takes my hand says daddy don't be sad 'cause
I know momma's watchin' now

And there's holes in the floor of Heaven

and her tears are pourin down
that's how you know she's watchin'
wishin' she could be here now
and sometimes when I'm lonely
I remember she can see
there's holes in the floor of Heaven
and she's watchin' over you and me

Watchin' over you and me

Watchin' over you and me
Watchin' over you and me