Well, we made it out of the hospital! Daylon was in for 11 days total. He went for surgery a week ago Tues and had his first central line pulled (the Hickman) and the put a Pic line in instead. This new line runs from his heart, across his chest and out his arm. It's just temporary. When the chemo starts in a few weeks, he'll have another surgery to have it pulled and a Hickman put in again. Poor baby. I'll say one thing, his skin is tolerating the new line so much better. His skin really broke down with the Hickman. His belly and side (where the lines dragged) were turning into one giant open sore. Since they took out the Hickman he's starting to heal up! Thank goodness! We had to hang around the hospital for several days so they could figure out what antibiotics would be effective on his specific types of bacteria. They finally worked it all out early this week.
Daylon loved when Daddy and the kids visited, but now he's sooo much happier being back at the Ronald McDonald house with them! Daylon personality has developed so much over the past couple months and Brian and I love watching him! His body overal, is in pretty good shape right now, and since the pain has faded, his personality can shine in it's place. The nurses just fussed over him! He's such a flirt! He'll wave, clap, give high five, and he loves "talking" to people. He babbles like crazy and he's actually pretty good at mimicking sounds and inflexes in tone. He's added "up" and "book" to his vocabulary, bringing the grand total to....drum roll...four! :) LOL! He's getting there! One thing we've learned about Daylon and EB, is he does things at his own pace. OH! One of the people who will start helping Daylon is a physical therapist. She's really sweet. With any luck, Daylon will be crawling by 18 mo. Well, we'll see though. No rush. Anyway, one of the funniest things Daylon does right now is his dinosaur growl. Our other kids love PBS's "Dinosaur Train" and love acting like dinosaurs. Caleb, of course, loves being T-Rex with a killer growl. Daylon adores Caleb and has picked up on the dinosaur bit. The kids think he's so funny, which only encourages Daylon. I'm kind of nervous that it's blistering his larnyx, but he doesn't seem to mind it. The growl has kind of become his signature cute thing to get his way. He wants a toy? He growls and smiles. He really wants you to hold him? He says "up" with a growl and a grin. Yeah. He gettin' his way around here...which is why Brian and I have taken to calling him "King Tut". He's a little childhood ruler! Well, that and the stay at the hospital really messed up his sleeping patterns and he's been staying up until 3:30, 4, 5, or later (we can't just put him to bed and hope he falls asleep because he'll scratch at himself when he's alone resulting in broken bandages and torn skin)! I hoping to put up a video link so you can all see Daylon the Dino!
Other Edling news:
My mom, Barbara, flew in on the 5th and will be here until the 15th. It's been so nice for all of us to visit with her. The kids of course, are thrilled to play with her and Brian and I have really enjoyed showing her all the great beauty of Minnesota. Mom has this idea that Brian and I should spend as much time together as possible while she's here since we'll be apart for so long in the coming week. I like her thinking!!
About an hour and a half after Daylon got out of the hospital we were at Sam's club eating a hot dog lunch and Violet fell off the back of the bench hitting her head on the bench behind her resulting in 3 staples. We just can't seem to get enough of the hospital! :)
The kids are really enjoying all of the RMH field trips. They went bowling on Tues, Weds. they met Justin Morneau (plays for the Twins) and got his autograph and pictures taken with him, and right now they are at a ceramics store making art from clay. The Ronald McDonald House is so generous with their trips! Everything is free and travel is provided. I can't get over it!
We wanted to thank everyone for all the prayers and sweet cards. You've all been so great!