Day +211: Here we sit...

Well, the title pretty much says it all.
 I'm here at CHOC with Daylon, Keira and two different forms of bacteria growing in Daylon's blood. Remember how in my last post I said he might be admitted? Well, turns out he had a staph infection from his Hickman line, but since the fever only last two days Daylon was free to come and go as he pleases and IV antibiotics could just be done from home. I am SO THANKFUL Fairview (the hospital in Minnesota) made us undergo a series of classes so we could take care of things ourselves and spend less time in the hospital! Dr. Buchbinder had Daylon go to outpatient infusion to get IV IG, which is a blood product full of antibodies given over six hours. Daylon is such a trooper! He did cry for about 30 minutes of the six hours, but have you ever know a kid to sit still for 6 hours? He's such a great kid!
 Cultures from his PIC line have continued to come back positive for infection and on Thurs it came back positive for two infections. That was the last straw for the docs and they had us come in. If everything goes as planned, we should be discharged late Sunday night which is perfect because Keira starts her new school on Monday and I have to be there for that!

  Minesotta called with the first step of his genetic testing results. Basically, they said that it looks to more than likely be genetic (the blister test that Brian and I took, proved that) and he's without a doubt Junctional Herlitz. There's a bunch of other things we learned (which to be honest, I'm not sure I entirely understand), but he's pointless to explain because it doesn't mean a whole lot just yet. Brian and I will be tested next, this June when we return for Daylon's "One Year" check up.
 More highlights of the week:
 Daylon rolled over on Monday night! He hasn't done that since he was 3 months old, so that's a biggie. Our personal goal for him to have him stand or crawl by Easter. We'll see. Knee skin tearing and hospital stays will definately slow the goal.
  Six days ago, as a last attempt to save our son from continuing malnutrition and vomiting, we started giving him 3 ml every 10 minutes all day while he's awake to keep his stomach constantly going a bit. I'm happy to report that it's actually working!! He's up to 10 ml every 5 minutes and vomiting less than 10 times a day!! He even had two days this week where he didn't throw up at all! Amazing!
  His skin has also made big stides in improving this week. Almost everything has healed up and he's only been getting a blister, at most, a day! Woo-hoo! We have need to go back to the open cloth diaper over the disposable diaper, like pre-transplant, but that's okay.

  Starting next week, dialysis is down to two days a week!!!! Can you believe it!?! His BUN today was 15 (under 19 is good) and his creatinine is 1.34 (under .58 is good). Improvements everywhere!
  The lowest point of the week, well, sadly it's not the admission to the hospital. Remember last month when Daylon had oral surgery to remove granulation tissue? Well, during the procedure they used tools to keep his mouth open and remove the tissue that were too rough for his mouth. His mouth developed very unusual blisters, which eventually became infected, then healed up. As they healed, the blister started to clump together into a mass. The mass has grown and grown. It's alarming, actually. The best way I can describe it, is it's like he has a double decker tongue. See for yourself:

Mid-December (the circles are the odd blisters)

This week

I sent the pictures to Dr. Tolar and he is having the ENT doctor from out here take a small biopsy from his tongue to check for cancer. It's just a procaution, but it's growing so quickly that they need to check for the obvious. The thought of Daylon having cancer on top of everything else makes me sick. Brian and I have decided to just put it out of mind the best we can until we get the results. Please pray that his tongue is nothing more than unusual scar tissue.

 Other Edling news:

 - So excited to speak to Aunt Emily on Skype, Keira ran onto the tile and fell, busting open her chin...AGAIN! Second time in 6 months! I've never, EVER heard of anyone doing that and she's done it twice! Poor kid! I think she must not put her arms out when she falls! :) What a goofball! Six hours in the ER and five stitches later, she was as good as new!

  I hope you all are doing well! We're so thankful to have so many wonderful people in our lives! Good night!

The twins are enjoying the Summer like weather in California!

...While, Caleb hasn't adjusted to life without some sort of jacket! :)