long time gone

 Hey Everyone,
  I'm sorry it's been so long since my last post. Life has been a whirlwind and at the end of my day (around 2 am) the thought of sitting down and processing my thoughts so I can blog about life, is unappealing to be perfectly honest. For me, sometimes it's best to just plow right through and think about stuff later. Not the most grown up of tactics, but it works. :)

  Daylon's weight has continued to be a big concern. He weighed in this week at 10.3 kg. Last week he was up a smidgen but it may have been his clothes. He's eating pretty well and is willing to try some table food even. His weight has just continued to drop for no known reason. If I saw him from off the street I would guess that he has failure to thrive. His mood has been going between depression and fussy for months. He quit talking, laughing, smiling, playing, or showing interest in anything but being held. Even when he's being held, he's still fussing. It's been emotionally trying for both Brian and I to watch him suffer for and not have a clue what to do. We've really been praying hard for him this last week and we have started to see an improvement. He smiled a couple of times this week and even laughed once yesterday. Starting this last weekend he would pick up an item or toy and sometimes actually look like he was playing. The improvement in his personality has meant the world to us. Now if only he would gain weight....

  We saw Dr. Grant (GI specialist) last week to come up with a plan for Daylon's nutritional needs. Daylon's labs have improved some but his electrolytes need some serious improvement to keep Daylon alive. The doctors don't feel that another g-tube or PIC line are a good idea for Daylon. The trouble Daylon has had in the past with the g-tube was really concerning for Dr. Grant. Apparently, he even yelled at the surgeon while we were away in MN. I had no clue that he took it so personally, but I've got to say, I'm grateful he did. I know it will insure better care for Daylon in the future. What he ultimately decided was that he would give Daylon one month to put on weight on his own (since he's starting to eat) and in the meantime, he'll consult all of the doctors on Daylon's team and come up with a plan that everyone feels comfortable with. with have 3 weeks left, so I hope we start to see some improvement soon.

   Okay, so one last area in Daylon's life has been a bit rough: Respiratory. Daylon got a cold just before being admitted into the hospital and he developed a cough. He still has the cough. We all got the cold and I will say, it was a bugger of a cold with a lingering cough, but it's gone to new heights with Daylon. It's to the point that he coughs the ENTIRE time he drinks from his bottle, all through the night he has a hard time coughing and breathing and now he's wheezing and coughing almost constantly. Seriously. For example, this morning he coughed (or had a series of coughs) every minute until noon. He can hardly catch his breath. We went to the BMT clinic yesterday and they were obviously concerned to see how his health has declined even in this last week. Daylon had a cough and a horrible wheeze from the time he was 3 weeks old. The problem was that he would cry or cough and then blister and then scar and stricken his airway. We decided that a trach was something we were going to pass on (we didn't think his skin could tolerate the incision and constant irritation) so when he had a growth spurt and his breathing eased up some, we were thrilled! I mean, before you could hear him breathe from across the room and he was always a little grayish. He's not that bad right now, but it's definitely becoming more and more of an issue. It could also be that he continues to lose weight despite eating again because of his body's increase in caloric needs due to the blistering airway. I'll let you know more as we learn more.

This is his Easter outfit. He still can't go to church, so he wore it to Saturdays Easter dinner at Grandma and Papa DLC's house with the Fraze family

  To add to the chaos, we've moved to Lake Elsinore! Adding in unpacking and setting up the house to our normal schedule has had us going non stop (hence the 2am bedtime this last month). Keira is still attending school in Corona, so it's been an additional pain in the tuccus (I think that's how you spell it) to get her up and ready bright and early so she can make the trip to the 91fwy on Daddy's way to work. I am so thankful that my mom has offered to take Keira to school on Brian's early days and pick her up when it gets out in the afternoon. I will say though, Keira is lovin' all this quality time with Daddy and Grandma and Papa.
  Oh! I almost forgot! My parents, Brian and I were asked to speak at a fireside/church event for our ward/congregation about the miracles we've seen in Daylon's life. Brian spoke about the disease and life before transplant, my mom spoke about the fundraiser and walk-a-thon last May, I talked about the events in Minnesota to current time and my dad spoke on "Prayer". It was such an honor to be able to share with others how our life has been touched and influenced by prayer and the hand of God. I feel so blessed to have experienced this life and to have seen miracle after miracle first hand. Through the trials we have had, we have grown closer to God and closer as a family. I am a better wife, mother, daughter and sister for it.

 I was interrupted when I wrote the above a couple of days ago and never posted it. I've decided just to add on from there. Anyway, we just found out today that Daylon will need to return to Minnesota as soon as the insurance approves it. The doctors up there are taking over Daylon's care just for a week or so (I think) to get things back on tract. He is having a g-tube put in again and the surgeon, GI and anesthesia have all been contacted. Minnesota is the best place for Daylon to have surgery for the following reasons: 1. so they can attempt to NOT intubate him, and 2. Dr. Saultzman has been the doctor to operate on Daylon repeatedly and has developed a stitch that last for a decent amount of time. For some reason, regardless of transplant, stitches still just slip right off Daylon while still in the OR. Dr. Tolar also wants Daylon's lungs and airways tested by their Pulmonary team to see where he's at with all that.
Oh, here's what Daylon looks like these days...

his skin is awesome but he looks like he belongs in some commercial about starving kids in Africa.

 I will update again when we have official dates. Thanks so much for your love and support. I'm sorry to make you all wait.