Wednesday, August 11, 2010

a whole lotta random stuff

Crazy after-nap hair from yesterday.
"Excuse me, Mom. I need to make a call."
"DADDY! Guess what? I have cuh-RAZY hair!"
(I don't place him in front of this door for the light, by the way. This is seriously his favorite spot in the house, and he crawls there and spends 20 minutes at a time playing and looking out the glass door. But the lighting is really good too... an extra perk!)

Jonah stood up on his own for the first time today. He's stood up by pushing up on something low (namely us when we're lying on the floor next to him), but today he pulled up to something higher. He's still not really using his hands to do it, but hey, it's a start. BIG BOY.
He was very happy about it, as you can clearly see.
And then he needed to take a rest and chill on his wobble penguin. All that standing up was hard work.
And I just thought this one was cute.

Speaking of cute, Courtney posted some ADORABLE videos of Tripp today. You can see them here, but I'm going to share this one, because you will be a better person for having seen it. Warning: your heart may just explode from the cuteness.

And something completely random - I love this blog. Katherine linked to it on her blog earlier in the week. It's a lady who dresses up her baby and creates scenes around her while she sleeps and then photographs her "day dreams." I know that sounds a little strange, but it really is amazing. Here's one of my favorites.

Oh my word. You should definitely stop by. There are tons of other cute ones.

And in the news today -
A USA Today article on the BMT transplants HERE.
A Star Tribune (Minneapolis) article HERE.
A Bloomberg Businessweek article HERE.
A write-up on the U of M site HERE with a great update on four of the patients HERE.
And a publication of the results HERE, in the New England Journal of Medicine.

(Thanks to those of you who sent them to me.)

Hopefully all of this being publicized will get more interest and funding. It's an exciting, yet terrifying, time for the EB community. Thank God for doctors and researchers who care enough to look for cures for the most rare diseases. Our kids need help too.

13 comments:

Mandy's Memories said...

I am a new follower! How precious! Love reading your blog!~Thanks for the link to the photo sleeping blog! Such cute ideas. I can't beleive that baby lays still during all that moving around.

Laura A said...

YAY for Jonah standing up all by himself!! He's definitely getting big! We have that wobble penguin too - it's still a favorite even though Byron's almost 3!

Am going over to Courtney's site to watch the other Tripp videos - the one you posted is SO cute!!

Continuing to pray for you and all the EB families and for more BMT successes - so that very soon my EB prayer list will get shorter and shorter!

Hope you have a great Thursday!

Love,
Laura

PS - The CFA we go to is doing FREE sweet tea on Fridays again - hope the one near you is too!

Katherine @ Grass Stains said...

Glad you like Mila's daydreams, too. I was totally captivated by it. LOVE all the new pictures of Jonah ... Jakey's having FITS over them. Can't wait to show these to him tomorrow night. Love you!

Me, the boys and a Farm... said...

Oh my goodness...saw Courtney's blog earlier...those video's were SO STINKING CUTE! Thanks for the info on the other blog...that sounds a lot more strange than it actually is, when you see it. I liked the laundry day, my pearl and, the bookworm was adorable! Love the new pics of Jonah.

Emily said...

I watched the video of Tripp because you said it would make me a better person.. and I'm so glad I did!! That was absolutely adorable. =)

igottanikoncamera said...

ohmylord, the video of sweet Tripp was just too much cuteness for any one person!! Thanks for sharing!

Debra said...

I read the Star Tribune article and was going to put the link in your comments, but you beat me to it. So glad that awareness is growing about EB (including mine)! Keeping all of you in our prayers!

Courtney Roth said...

You are so sweet to share his video. Thanks:)
I wish he and Jonah could have a playdate:( they're getting so fun!! Those pictures of him looking from outside the glass door are my absolute FAV! How much more adorable can he get??
I love you and hope to get to chat soon!! Its been way too long!!!!

The Wells family said...

Yahoo has the BMT on their news feeds!!! Love Jonah's nap hair!

Erika said...

Go, Jonah! What a great job standing up! He is so cute! I love the photo of him resting on the penguin - priceless! We're continuing to pray for you & the other EB families.

mommie said...

http://www.cnn.com/2010/HEALTH/08/12/skin.disease.stem.cell/index.html?hpt=C1


Hi there! I wanted to share this with you...I just read it and thought of your sweet family and little boy, I have been reading your blog and praying for you ever since Jonah was born...I believe I was referred to your blog via Angie Smith of Bring the Rain....you may already be aware of these advances but I just saw the article on CNN and thought of you immediately! Many blessings to you, and so glad to see Jonah is thriving! Erica in Illinois

kdliberty said...

That story the previous poster take about is the top story on the CNN home page!!!
It will not be long before Jonah is walking!

Julia said...

I'm from MN and I just read the article in the Star Trib that was laying out today at work!

That video of Tripp was ridiculously cute :)