Day 60!

I can't even believe it's been 60 days since Daylon's transplant! Things have really been picking up lately. I've been such a horrible blogger the past couple days for good reason! It has been out of control crazy!! I don't have a huge ton of time and unfortunately I wasted most of it trying to figure out the new upgraded system blogger has. Alright, enough complaining! Let's get down to the nitty gritty!

Thursday was a HUGE DAY! In the wee early morning, dialysis started and because he didn't have dialysis on Wednesday (this is my belief) he actually did okay. They got off what they needed without leaving me with a sick, dried out baby. My mom and Brian switched out at lunch time, right as dialysis was ending. Brian and Jess (my sister-in-law) took the other kids to Lake Calhoun for swimming and fun in the sun, while my mom and I (and Rachel, our nurse) helped Daylon relearn a few things. :)

First Time sitting in a big boy chair...again!

then...

First Wagon Ride out of his room!!

he almost didn't fit!

Grandma, Daylon and Rachel

Dropping by to see his girlfriend...her Daddy is her go to guy. He'll pass on Daylon's salutations :)

LOOK!!! He's grasping and playing with a toy!!

the doctors idea of his neurological well being is becoming less and less of a reality!!

Daylon gets physical therapy or occupational therapy everyday for 20 minutes. In the meantime, Brian and I have been working with him constantly trying to reintroduce him to life, his surroundings and rebuilding muscle and motor skills. Because of the stroke, Daylon is only able to look off to his left...as you may have noticed. :)
Daddy and Daylon working on some homemade therapy:

Friday:

Brian took my mom to the airport at 9am. My mom got here July 27th and has worked so hard to make sure the other four kids were tended to so Brian and I could be up at the hospital together during such a hard time in Daylon's life. We're so very grateful that she was able to come...and that my dad was willing to give her up for 3 1/2 weeks!! :) While he was gone, Daylon's nurse that day called and said they were moving him back to 5D!! Like, RIGHT NOW! Holy smokes! I was so floored! A bit shocked too. The hope was to move him this weekend, but we all know how that goes! Well, they were short on beds on 5C and since he was moving over in a day or two anyway, they decided to move him out early! He still needs pretty much constant care, but I'm loving all the space in these rooms! It's a lot less confusing when there's only one doctor giving orders. While I ran to the hospital, Brian and the kids went to the Mall of America with Jess, and then dropped her off at the airport at 2pm. Thank you for coming Jess! The kids had a blast!

Daylon's soft spot is now a deep, bony crater

Friday was not the best day however, in regards to dialysis. The dialysis nurse got there right as he was moving over and between the chaos of the two, there was an accident. A blanket was rolled up under his mattress, getting him off his back a touch, and was left on for the weight. The nephrologist (sp.?)took a look at his weight and upped his fluid loss goal. The goal is to keep him around 13.5 and he went down to 13.1. It probably doesn't seem like much, but it is. Not to mention he peed like 400cc also on Friday. They actually had to give him straight fluid to try to correct the situation. His heart rate got to 200, his blood pressure was going crazy, he got a high fever, started shaking, gasping, and throwing up.  Some of the symptoms were because he was too dry and others were because it had pulled so much of his medicine off his was going through serious withdrawls. I personally, hated it, so I can only imagine what Daylon thought of it.

For about 9 hours we got to be next door neighbors with the Pops! Elle's and Daylon's JEB cove of the BMT unit! Daylon's door is on the left and Elle's on the right.

We ended up moving one more time late that night because Daylon's supply cart couldn't fit in the room. I love, love, love all this space!!

Every EB parent's dream! 10 days worth of supplies at my finger tips!

Saturday:

Today was pretty much the same thing, another day. He is sleeping so ridiculously little, I'm going nuts! He threw up for the last time at around 8am this morning, but has been gaggy the rest of the day. Brian came at noon so I could spend a little time with the rest of the kids and shower. They drugged Daylon during dialysis, so it was fairly uneventful for Brian. Shockingly, they used NO dopimine during they entire thing! His heart rate never fully recovered from Friday's run, so his pulse to start was in the 140s at the start.

I took the kids to Target while I had them. We needed shampoo and I needed to get out and be among humans. :) The trip it was a fiasco and definitely fixed my urge to take on the day. I know this is a longer post, but you need to hear about this! :) I bribed the kids to stay calm and not kill each other while I showered. An icee was on the line, so they were angels...at home. To catch you up: I refuse to be the parent who stands in Target with the screaming wild child, pretending that they are childless. On the other hand, I won't be the mom patiently calling after and chasing her toddler whose running through the clothing racks either. I hate having attention drawn to myself, so if my kids misbehave, I empty my cart (sorry shelf stockers! Job stability, right? :) ) and go home. I have a bunch of small kids, so you have to be strict to stay in control (I'm learning). Alright, so, my kids get their drinks and we're strolling along. I decided I also wanted to try to find some things to use for stimulating Daylon and bringing him back to reality. I had no idea what I was looking for, just looking. Of course, the kids start reaching for items as we pass them; the icees ran low and the slurping began; the twins started a competition of who was a better singer and when I asked that they quit arguing they decided that they could get their point across to each other by demonstrating their skills...LOUDLY...at the same time...singing different songs; I'm almost certain I had an actual anxiety attack when I saw that the Summer clothes were replaced with Winter clothes and the jackets they had for sale were the type of jackets that you buy back home in a sporting goods store when you want to climb Mt. Everest; As we were passing the electronics section, Keira paused for a good 30 seconds in front of a tv showing a Justin Bieber (or whatever his name is...you know, that 14 year old with a comb-over) music video; Our cashier had a hair color somewhere in between hot orange and red and Sadie needed to know, "why's that girl's hair that weird red?" repeatedly and after I convinced her in a very stern whisper that if she heard her she might make her cry (I know, I'm pathetic), Caleb stared at her for probably a full minute before asking her, "Why do you have to look like that?"; there was also an escapade in the family restroom where in the middle of a crying (Caleb wanted to be the first to pee) and peeing simultaneously, Caleb peed straight up, wetting the ceiling...and then there was cleaning up the girls after they were caught in the freak potty storm. On the way out to the car, this time crying about it being a sunny day (no joke. He's normally not such a baby) Caleb told me he was ready for Daddy to watch him now (me too!) and he would never, ever sleep again (he was out before we left the parking lot). Should I have walked out of the store? Absolutely, but I needed to go out to save my sanity. The irony is, going out almost made me lose it! :) You gotta laugh about life,right!

When I returned Daylon was back on the nasal canula (he had be off since 1am), and as sick as ever. Dialysis had just finished. Since then, his fever has been up to 103.7F and his pulse is 200. It's 1:30am and he is starting to get better.

One last bit of good news!

Daylon started looking straight ahead and to his right!

We moved his mobile to the right of his bed and started standing more on his right to help him have the desire to work on looking straight. He's such a hard worker! And they doubted it could be done! Another miracle! Hard work and prayers. It'll do it every time!

Sweet dreams!

the kids came to visit Daylon and bring him the panda they made him as a 'Welcome back to 5D' gift. They were all so excited to see him awake!! Daylon definitely recognized them too! He went crazy and was sooo verbal!