Monday, August 9, 2010


The big day is finally here!! Daylon was extubated! We'll let the pictures do the talking!

Daylon and his snake before the procedure

It had to take place in the room because Daylon's heart rate was in the 50's...thank you Precedex.

Whoooo, that's a lot of phlegm! FYI: that should be pink.

Turn up the suction! They're going in!! The docs actually thought the light was broken on there scope at one point, but later realized it was just COVERED in goop.

Donald, Mickey and Brian are sooo happy for Daylon.

Yeah. There are no words for this beast.

All clear! We're ready for extubation! Time to rise and shine! Daylon! Wake up, Buddy!

Let's open those peepers!... Come on!... Anytime now!...ok. um...the doctors are leaving. Seriously, Daylon! Where's that notorious spastic movement?

The Velcro is going back on?! We're working backwards here, guys! Wait! Don't go!

Tim (Bella's daddy) and Brian grab a chat in the hall. Am I crazy, or do these two look like they could pass for brothers? The sign behind them was a gift from Erin, Daylon's primary nurse! So sweet! ....Oh, there's movement! ...Back to the main scene!

Ta da!! I present Daylon's face! He's a bit puffy and on a nasal cannula, but he's working his way back!

It's so wonderful to have our little guy start to come back to us. It's fell like I haven't seen him in 6 weeks. Brian and I have been talking a lot lately about how much we miss him. We can't wait to see the old him back in action! The doctors are all patiently waiting for him to show them what he's capable of now. The next few days to a week are going to be really hard for Daylon and us as he goes through withdrawls from the pain killers and sedation. They have all told us that he will have hallucinations, vomiting, diarrhea, sneezing fits (I know, weird), and there will be times where he's inconsolable. I'm really dreading all this and I hate to see him suffer but at least we'll be moving forward. I hope to have pictures up very soon of us holding him. We haven't been able to yet. We're waiting for dialysis to end.
Edling News: Brian's home!! I love that he's back! It was so fun to go with the kids to the airport and try to scout out Daddy. I wish I had had my camera on me! It was one of those moments all remember forever! As soon as the kids saw him, they all yelled, "Daddy" and bolted for him. Brian turned around, went down on one knee and was engulfed by our four kiddos. I remember meeting my dad at the airport as a kid and being so excited. I loved reliving my childhood through them. During his visit we, of course stayed in touch, but he would also send me little text of different things I was missing from back home. I thought I'd share a few!

Brian's photo text's while in CA:

Carl's Jr.! Mmmmmmm!

Lounging in our LoveSac that we left at my parents! What a brat! :)

Brian eating dinner at his favorite Mexican restaurant, La Isla.
This picture is my favorite. It came with the text, "This is the closest I can come to bringing you flowers". I know it's cheesy, but isn't he sweet!?!

More Edling news:

Keira and I had a girls night on Friday. We had such a blast together! She got to pick any place she wanted for dinner and she chose, Perkins (think Denny's)! We had breakfast for dinner, ran to Target and stocked up on things like $1 markers and 25 cent crayola crayons and folders, then we went to the Mall of America, for a few back-t0-school sales. Let me tell you, taking my daughter to the mall, to buy clothes in these little girl stores made me break out in a cold sweat. Literally. It was shameful how much smut there is in these stores for children who wear a size 6. Not joking, I saw a pair of sweat pants that had, "You can quit staring now" written on the butt. The worst part is that it was in a store that only carried little girl sizes 5-12. Heck yeah, you can quit staring, you pedophile! Ugh. I'm officially freaking out about sending my daughter out into the world. I really had a good time with Keira though. She is such a sweet little girl. She was so excited about everything, and jumping up and down when I'd say things like, "Who would you like on your backpack?". It was cracking me up. I loved that she kept hugging me for no reason. Being a mom is the greatest.
There was a little ad lib on her menu that we did together. She thought it was a hoot and asked me to put in on our can I say "no"?! Keira filled in the blanks and I highlighted them in red. My responses are purple
An Epic Experience
I was really glad today about seeing Imagination Movers (A Disney Channel band) perform in concert. Five fans were coming to hear them sing their #1 song, "I love Taylor Swift". I was extra-excited! Smitty (the one with the cowboy hat) started the show by playing a solo on the piano. Then, he sang a song about his pet Killer Whale. The grand finale of the show featured a giant toilet (What?! She's five! LOL!) ! All the fans agreed that it was an amazing concert!
Thanks for humoring her!

This is my niece Elizabeth. I had to post this picture because she's wearing the shirt I got her and she looks adorable in it. Isn't she a cutie!?
Last bit of good news: There is a new Junctional Herlitz EB baby to join us here on the BMT floor! Her name is Elizabeth/Elle, she's eight months old and as big as a minute! She'll be the second JEB BMT! Our two families had a chance to meet and visit last night. They are such a wonderful, warm family and we encourage you all to visit Elle's blog, as she starts her BMT journey to better skin and a long, healthy life! Look for her name under "Daylon's EB Friends".


unzen said...

Thank you so much for the post. Daylon is going to show every one how strong he is. I am so happy he is breathing on his own and your whole family is together. Will keep on praying for you all. Great times with your daughter. I can feel your love for her. God Bless you. Brenda U MN

Anonymous said...

Your wonderful post equals a wonderful birthday present for me. :) Seeing your sweet Daylon without the tube and the thought that you will be able to soon hold him in your arms is the best news I could hear. Keep the great news coming and I will continue praying. Denise WI

Bella's Blessings said...

What was that monstrosity stuck in Daylon's mouth??? Holy cow. We are SOOOOOO HAPPY for you guys! What a HUGE milestone! Bella does NOT wanna be left behind on 5C! She is rallying as fast as her little tukus will let her! Honored as always to be by your side.

Anonymous said...

Oh such a happy day. God is good. You are surely blessed. The journey continues. And so do my prayers for Mr. Daylon. sg-KS

The McLaughlins said...

GO DAYLON!! Our prayers are being answered.
He is such a fighter. I know its going to be a hard next couple of days but you are such a strong person Jenn. You and Brian are wonderful parents. Lots of prayers are still coming your way.

Take Care,
Amber McLaughlin,CA

jardinera linda said...

SO happy to read the good news. i loved the video, so exciting to see him moving,
your baby is back!!!
we've felt your pain, and now we feel your happiness. you'll be holding him in no time. so happy for you all.

Anonymous said...

OH Happy Day!!! Tears of joy for Daylon and your entire family. We can't wait to see pictures of you holding your precious son again.

Thank you God for this day, thank you for our celebration of Daylon's accomplishments, thank you Lord, You are an awesome God and I thank you! I praise You Father for allowing us to share in the Sweet Baby Daylon's journey, for allowing us to witness Your miracles. I thank You for providing me with FAITH and showing me never to waiver. I THANK YOU, I THANK YOU, I THANK YOU!!! I pray for Daylon's continued recovery, may You bless him Father Jesus and give him our prayers and well intentions. Lord I ask that you strengthen Daylon's body and mind. Let Daylon feel all the love that is being sent his way. In Your name I pray...AMEN!

Lynne, Bob, Jack and Ben said...

So amazing to see Daylon off the vent! Woo hooooo! You guys, your loe and your family inspire our family every day. Sending prayers and peace as Daylon goes through these next difficult days of weaning off the meds.

Linda said...

So happy to see Daylon's face. He sure is a keeper, isn't he? Extra prayers while he is coming off these awful meds he has been on for so long.
Thanks for the link to little Elle. I will be following her journey too. Thank God there is a light at the end of the tunnel. Keep the Faith. God Is Good All The Time. Love Leah's Nana

Anonymous said...

Way to go Daylon! Way to Go!
Rada - Indiana
Friend of Bella's

sheri_chatellier said...

Congratulations!!! I am a friend of Courtney and Tripp back in Louisiana and i keep up with Daylon and Bella daily. I couldn't be happier about the great news. As i was telling bella's dad earlier, your daylon is such an inspiration to me as is bella and tripp. You are full of the God's grace and may he keep blessing your daylon and the rest of your family with wonderful, positive news. I pray daily for you guys and will continue to. Keep up the wonderful strength, for if he brings you to it, he will bring you through it! Love, prayers, and continued support....Sheri


Yay loved hearing the good news! Puts a smile on my face. Go Daylon! Love you!