reintroducing solid foods with Daddy ...SHERBET! Yum!
Hey Everyone!
I just learned, from one of you, that there is a little boy in Uganda with EB. The idea of having a kid with EB in a poverty stricken country, makes me feel ill. My heart goes out to this little guy, Robert. To read his story and offer support through comments or financial, go to http://servinghischildreninuganda.blogspot.com/2010/09/meet-baby-robert-robert-is-one-month.html
Thank you for letting me know about Robert, "theitaliandyes"!
Daylon has done pretty well today. He really perks up being at home! Thankfully, he didn't need dialysis today, so we were able to go out on pass for quite a while! We played up in our apartment for a while and then went down for dinner. We ran into the Pops and the Ringgolds and he charmed them for a bit (while the other 4 went wild!) and then after dinner we went outside to play on the Caterpillar. The Pops joined us for a bit and the kids loved playing with Chloe. She's such a doll!
Sadie, Keira, Violet, Chloe, and Caleb hamming it up!
Daylon was being so sweet! He LOVES being outside!
Once Daylon and I got back to the hospital he was in such a good mood. I couldn't help but snag this video of him! I know he's my own kid, but isn't he a hoot!
Tomorrow is a big day for our family. The RMH has paired up with the University of Minnesota and they have chosen our family to be their "Gopher Family". Basically what that means is we were all invited to attended the U of M vs USC (I know. Brian ALMOST died.) game tomorrow as the U of M's special guests. We have a VIP lunch and pre-game party at noon, followed by a media thing at 2pm, the game is at 2:30 and we'll be watch from the sideline (I really hope my kids don't try to go long!) in our new U of M clothes! They're supposed to make some video of our family to play up on the big screen during the game. I REALLY don't like attention, but this is a once in a lifetime thing for the kids and I mean, hello, it's USC. Back home, we always look for the scrimmage game to take the kids to (tickets are upwards of $100 each and scrimmages are free. It's a no brainer) and this is going to be a million times better. All four of the older kids can spot a USC sign a mile away, so the goal the last couple of days has been to cheer on the "Gophers" ...just trying to prevent an embarrassing moment during Saturday's game! Dr. Wagner told us that Daylon needs to stay behind. :( I'm so disappointed. But, he's the boss and if Daylon is ever going to get out of here, we need to show him we can handle the bad news. Don't worry, I'll take LOTS of pictures for him, I'm sure! :)
Well, I need to hit the hay. Busy day tomorrow that starts early! Sweet dreams.
Rachel wanted to hold him before she went on vacation...since he'll probably be discharged by the time she comes back!!!
Erin and Daylon playing around after pass tonight. She was cracking up at his ROAR! :)
Love the video! Love the growl! I am so happy for your family! I am so glad that the bumps have smoothed out! What a blessing to get to go to the game and raise awareness for EB kids. Thank you so much for sharing your journey with us. Though I have never met you I'd be proud to call you a friend.
That is so cool! My friend Lindsay has 2 deaf children and they were invited to a pro baseball game to be their family to raise awareness for this charity that helps with their hospital/doctor bills. The boys had a BLAST! You are going to have so much fun! I love his dino roar! Andrew and Zack asked me to play it like 3 times! The love seeing how Daylon is doing since we pray for him all the time. :) Have a blast today!
oh my gosh, Jen. LOOK AT HIS SKIN!!! That upper arm in the last shot with NO BANDAGES looking PERFECT! Amazing. Can we see you guys on TV cause YOU KNOW Matt has football on ALL DAY around here. I bet they'll show it during a commercial break. Would love to see you guys!
I'm so glad to see Daylon is eating solids. That's awesome. He is progressing so fast. I love hearing good news. Lots of prayers still on the way everyday.
Growling and eating foods orally.. wow!! Once again, I find myself coming to your blog when I need to feel lighter, when I need to remember that miracles really do happen, and beautiful babies get better. Thank you for sharing. You're in my thoughts all the time.
We're Brian and Jennifer Edling and we have 5 beautiful kids: Keira,8; Caleb,6; Violet and Sadie, 5; and Daylon who turned 3 in July. Daylon was born with a rare disease called Epidermolysis Bullosa. His specific form of EB is Junctional Herlitz. When contact is made with his skin, it blisters and peels or sometimes rips right off. Unfortunately, his form of EB also affects his soft tissues (organs, throat, mouth, eyes etc.) giving most kids with his condition less than one year to live. Thanks to modern technology, there's a new clinical trial Bone Marrow Transplant at the University of Minnesota for severe forms of EB. On June 24, 2010 Daylon became their first JEB patient to undergo transplant. We're all so excited at the prospect of Daylon's improved life! This is the story of our sweet baby Daylon, and life with EB.
8 comments:
Love the video! Love the growl! I am so happy for your family! I am so glad that the bumps have smoothed out! What a blessing to get to go to the game and raise awareness for EB kids.
Thank you so much for sharing your journey with us. Though I have never met you I'd be proud to call you a friend.
A sister in the gospel,
Cheryl
So glad you can have fun family outings. Have a great time at the game!
That is so cool! My friend Lindsay has 2 deaf children and they were invited to a pro baseball game to be their family to raise awareness for this charity that helps with their hospital/doctor bills. The boys had a BLAST! You are going to have so much fun!
I love his dino roar! Andrew and Zack asked me to play it like 3 times! The love seeing how Daylon is doing since we pray for him all the time. :)
Have a blast today!
oh my gosh, Jen. LOOK AT HIS SKIN!!! That upper arm in the last shot with NO BANDAGES looking PERFECT! Amazing. Can we see you guys on TV cause YOU KNOW Matt has football on ALL DAY around here. I bet they'll show it during a commercial break. Would love to see you guys!
I'm so glad to see Daylon is eating solids. That's awesome. He is progressing so fast. I love hearing good news. Lots of prayers still on the way everyday.
Take Care,
Amber McLaughlin,CA
Growling and eating foods orally.. wow!! Once again, I find myself coming to your blog when I need to feel lighter, when I need to remember that miracles really do happen, and beautiful babies get better. Thank you for sharing. You're in my thoughts all the time.
Daylon is so cute! Enjoy your special outing!
I saw your comment on baby Robert's post. Praying for your sweet little Daylon right now!
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