Sunday, September 6, 2009

Visitors, Stars and Prayer Quilts

Leah had a very visitor-filled week!

On Wednesday night her Great Aunt Jody and her Great-Grandfather flew in all the way from California to come and visit! Leah's Great Aunt Penny is also up from Virginia for awhile because Leah's cousin was born just yesterday! (More on that later).

Aunt Jody gave Leah a really cool gift: Leah is officially a star. We already knew that, but now a star has been named in her honor! So somewhere up in the sky is star #323139, now known as 'Leah Elizabeth Turnquist'. Leah got an official certificate of registry, a Christmas ornament, and a CD that tells us all about how to find her star.

Another awesome gift: the church that Leah's great-grandfathers sister belongs to made this prayer quilt and sent it to us. It's beyond gorgeous, with butterflies and ladybugs.

So Faith Lutheran Church in Craig Colorado will be getting a very special thank you card from us but I wanted to post some pics of it here for all to see.

Then over the weekend my Mom and sister came down from Philly to visit. Aunt Joanne brought Leah more books, and Nana had a t-shirt and kitchen magnet from Boston for little Leah.


Here is Leah's brand new cousin, Nathan Thomas Row.

He's pretty cute huh?! He was born last night around 5:30. Aunt Jen and Nathan are doing great!

And for those not in the EB world - we've learned of some new leaps in the research for an (eventual) cure for EB. Rather than go into all the details, I'll refer you to the blog of another EB Mom. Patrice is Jonah's Mom; Jonah also has Junctional EB and he was born just a couple of weeks after Leah.

Here is her post on the actual research trials:

And here is her post on her feelings/thoughts on the trials (she words it pretty perfectly):

Our thoughts and feelings are pretty much the same; yes it is a great thing that science has brought us to this. However, it's not something to jump into blindly and moreover, Leah is most likely too young and does not have any siblings that could be donors for her to be considered for the trials. Nevertheless we too are also trying to gather all the paperwork, tests and other necessary preliminary items to submit to the hospital for consideration.


And finally, today I'm getting everything ready for our trip to the hospital tomorrow for Leah's follow up surgery (ie. second look at her airway).
Please say a prayer for her tomorrow.
We will be getting to the hospital at 6 AM and she is scheduled for her surgery at 7:30 AM. We will most likely have to stay overnight as well but hopefully this will be a short hospital stay and we can get her home again!


Linda said...

Special prayers today for our extra special little girl. Waiting for the good news!!!!
Love you guys!

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