Day +173- Part two

 Several of you commented that Daylon looked like Clark Kent with his new glasses. Well, it's time you knew...

He's SUPERMAN!

Hello Everyone!
Thank you all for your prayers, kind thoughts and comments. They've really helped Brian and I through today. Daylon has been in his room for only 20 minutes or so. I'm thrilled to report that the surgery went well. It was a long day and nothing happened on time or as quickly as I hoped but it's done!

not feeling too hot before surgery...but still willing to crack a smile!

 All three EB trained Anesthesiologist showed up for surgery and worked together to intubate Daylon. Literally. It was a sight to see. All three doctors crowded tightly around Daylon's head, glued to the camera. One had her hand on his throat to feel it go in, while the other two worked the camera. They put up no front and made it clear that they were nervous about the procedure. It's an unpleasant thing to watch your baby be intubated (especially with the gun camera in his mouth), but I can't even say how appreciative I was to watch these professionals provide the best possible care for Daylon by working together. Once he was all set up and the drill was out and ready to go, I headed for the door. An hour and a half later they called me back into the OR to help bandage the incisions. They drilled 3 nickle size holes in his head. Dr. Tolar said that has soon as the first hole was in and the drill removed, a gush of fluid came out. I'm glad I was in the lobby for that. I checked out the wound and got the low down of what happened during surgery and then Dr. Tolar took the reins. He set up biopsies and photography to take place while he was still unconscious. He told me that Daylon's skin is performing above average at this point post transplant. That was nice to hear.  I needed to hear something good. Extubation went well, but the whole process left Daylon really hoarse. He's gotta a husky voice to begin with, so this wasn't a shocker for me. Dr. Tolar said that the mystery sores in his mouth are not EB related. He's going to have them cultured because he believes they're the product of some sort of infection. One more thing to add to the pot. :) Until the drain comes out he can't be up higher than 3o degrees or be held. That will be a toughie for him. He LOVES to be held lately. As of right now, he's in a lot of pain obviously (three holes in the head and eight in the thigh might cause a bit of pain! :) ), but as always, he's a champ. He's the toughest little guy I know. I'm so grateful he's okay.

 Daylon is in the PICU for now and will stay here for 3 days or so (fingers crossed) and then he'll be moved back to 5D. All the doctors have said that things have gone so well today that we are still on tract for going back to CA on December 20th! I'm so excited. I PRAY that it all works out!! BMT is an emotional roller coaster like I've never been on before. When we got to Minnesota, my naive little mind thought that transplant would be really rough the first month, tough the first 100 days and challenging up to the first year. HA! :) While he was in 5C last time, I just kept thinking, "It's one hundred days. We can make that". After that Day +100, everyday has been a little bit of a drain. I know I shouldn't have, but I've put all my eggs in the 'going home for Christmas' basket. I'm emotionally tapped out. I have no clue how the BMT families from the past have done this. Living the BMT life for years? Wow. I have so much respect for them. I'm hoping that living life in the BMT fast lane (or slow lane, depending how you look at it) will get easier once we're back in Southern California with our extended family and the life we're used to. I'm so looking forward for the disaster of the day to be Keira's teacher calling at 10 am to ask me to bring 4 dozen cupcakes up to the school by noon. I used to hate those kind of days and now I love 'em. Go figure.
Enough rambling about me. We have one last bit of news to share....

This weekend Minnesota received the 5th largest blizzard in the state's history. Our city had a "Snow Emergency". Everything from restaurants, to stores  to snow plows were out of commission. Currently, 2/3 of Minnesota's average seasonal snowfall has been met. We had a negative 15 day on Sunday to boot. From what we've been told, this kind of cold is typically of late January-early February. Lucky us.

Our living room window...on the SECOND FLOOR!

 Seriously though, this was a really amazing storm. I hate driving in the snow to the point that I think my driving days here are over, but it was so crazy to see the snow fall sideways! I walked home from the hospital in it and it occurred to me for about the, uh, I dunno, fiftieth time that I could have never been a pioneer. My skin burned like it was on fire and I couldn't even see where I was or where I was going. R-I-D-I-C-U-L-O-U-S. 
 Warning: these pictures are really blurry and well, not the best. I hate the flash and it was freeeeeeeezing!



Outside the parking lot doors



There are the cars in the parking lot. Kind of. :)

It was fun to walk under this. I wasn't scared a bit. :p

Our landlord needs a place to stay apparently

RMH

The park across the street

This would be Keira, hip deep in snow

blizzard ends and it's time to trade off at the hospital.

  The kids thought the snow was great until they, one-by-one got stuck in the mounds of snow as big as they are. It's the kind of memories they won't soon forget. I love making memory wrinkles in their brains!
   Well, I'm ending here. I wanna post this before it gets any later. Thank you all again. You're amazing. We love you!

  Sweet dreams.