UPDATE



Daylon and Papa

 Hey Everyone!
Just a quick note to let you all know that Daylon is out of the hospital. The bacteria in his PICC line cleared up and we were free to go! Thank goodness that's over with! Round one million in the hospital and Daylon wins again!! Woo-hoo! All seriousness though, the Oncology ICU (aka in MN: BMT unit) staff was wonderful and super considerate of Daylon and all of the difficulties that are presented with tending to a patient you can hardly touch. His right arm pit is the only injury from the hospital stay (one nurse forgot to use aquaphor when taking a temp. and then pulled it out instead of lifting the arm first. She forgot...it happens), but all and all, it went well. :) The sent him home on a strict Vanco lock regimen and IV antibiotics twice a day. Kind of a pain, but hey! It's worth it, if we all get to be at home as a family and Daylon has a healthy PICC line, right?

This is Daylon.





Daylon hates to be bored...apparently...so he thought he would spice things up.

What? Was he not there for the last 18 months?!? They're spicy enough, Little Man.

While I packed our diaper bag for dialysis, Caleb followed me around the house saying, "Mommy, Daylon broke his milk". Yes, I stopped and looked up at him, but everything looked fine, so I kept working...besides! How can he brake his milk? Once he started to raise his voice, I decided to go back.

 This is what he meant:

He pulled his entire PICC line out. Stitches and all. Nice.

I got the bleeding to stop and spent the next hour in a frantic, wondering to do with a gaping whole in my son's arm. Good news is: no more TPN!!!
 The bad news? Daylon has a high caloric needs for his age courtesy of the BMT and EB, a low mineral requirement (renal failure), however his phosphorus and potassium are dangerously low, low protein requirement (renal failure again), is unable to swallow anything thicker than...well, let me just say he chokes and gags on pudding (mass on the tongue), can't chew (head bleed), and throws up ALL. THE. TIME.  Needless to say, this has been a trick. Every morning I blend things like avocados and whipping cream and Suplena (high cal, renal failure milk) and strawberries together. It's been...interesting. Some potions he likes, others have resulted in instant vomiting. Live and learn, right? :)

mac'n'cheese shake (made with whipping cream instead of milk)

 There's one other catch in the "weight issue". Since we've been back in CA Daylon weight has slowly and steadily dropped from 14.2 kg (his dry weight) to 12.2kg. That's 4.5 lbs. Come to find out the prescription for his TPN in CA has had 660 cal, which is less than half of the calories he needs. We just found out this week about that, but it's nice to at least know why his weight was dropping. On Monday at dialysis he weight 11.9kg, but they filled him full of fluid and we left with his weight at 12.8kg. We're hanging out right now without the PICC because despite his weight loss, his labs look better than they have since transplant. Woo-hoo!
 We went to the ENT doctor today and he said that the growth does not like it's cancerous, but they'll have to wait until the results come in to know for sure. He needs to have the entire growth removed and it will more than likely grow back, but it's growing too fast not to come out. He will need to be intubated and will probably spend a few days in the PICU afterwards. He said that Minnesota might be best for the procedure, but he could do it if we choose to say here. Brian and I are really leaning towards Minnesota, but it will all depend on what Dr. Tolar says. I'll keep you posted.
 Now I'm not one to post naked bath baby pictures, but I had to show off his amazing skin!! Oh! Did I mention he actually took a bath with out shedding a single tear? Yep. See, it's moments like that that make this all worthwhile.

 One last bit of good news. We were FINALLY able to tapper off Daylon's CSA (it lowers his immune system to decrease likeliness of CSA, but thrashes the kidneys, makes you hairy, nauseated, and your gums swell) on Sunday night!!!  We are praying so hard that in a couple of weeks Daylon's kidney function will completely return! We have been so excited for him to be off the drug since July and it's here! After his last dose Brian and I "high-fived" and tossed that bad boy in the trash!

  I need to head off to bed. Good night everyone. Thank you for your patience. I'll try to post more frequently. :) We love you!

Keira's first day of Kindergarten in CA (at my old Elementary School!)

On Friday my brother flew down and we got the okay to take Daylon to a non-crowded beach. He can't touch sand or the Ocean, or be in the sun, so needless to say this trip was a quickie at night. Come to find out, the privacy was pretty easy. There aren't a slew of people who go out for a wienie roast in January when it's in the low 50s. Shocking. We sure had fun though! It was Daylon first trip to the beach ever!

note the lighter fluid in Jonathan's hand

fluid in flames

...and this one because it's fun and crazy like Daylon

  On Saturday the Corona Fire Fighters invited our family to come down to the station for a tour and visit. Our family just loves the fire fighters in our area. They have been so wonderful and sweet to Daylon and our family this last year. Before we left for MN in May, 30 or firemen came to meet Daylon so that if we ever had to call for emergency help, they would know him and his situation. Pretty nice, huh!

 of course the kids always love testing out the fire fighter stuff too!

The only time our girls have ever been twiners