Here's a pic of the kids today at breakfast with Santa. They had a good time. Chloe kept trying to sneak back up to Santa while other kids were getting their pictures taken. It was nice to see my friends and everyone back in Shawnee, but it seems so odd to be doing something fun while Mav is in the hospital. I'm trying to be "normal" for the kids, but I'm back in that mode where I can't concentrate on anything. I just keep thinking about him. Maddie was insistent on putting up some decorations outside today, so she did. She did a very good job. She lined the walkway and two trees with lights and put our inflatable Santa up in the yard.

Mav had some big moves today. He was moved to a crib from the warmer. Greg says it looks much more comfortable. Mav also got to sit up in a bouncy seat for awhile today. Greg said he loved the toys on it. He took the toy bar off one time and Mav started to cry (you can't hear him cry because of the ventilator, but you can see him do it) so he put it back on and he stopped and just looked at it. They tried to change his dialysis to two hour dwell times, but he didn't like that too well and they had to go up on the vent a little. Just day by day. More tomorrow - jc

Mav is doing well today. They tried to wean his vent a little too quickly for his liking and they had to back off a little. His CRP is back down to <.2. The last BUN that I knew of was in the 30's and his creatinine was 1.3. Greg made it back down there and is enjoying spending time with Mav. He's been doing his therapy thing tonight and really working him over. They gave him some morphine and he was sleeping while Greg was working on him, but he'll probably be pretty sore tomorrow. His muscles in his legs are so tight and his little arms only go up about as much as the other Maverick's (John McCain) - and no that's not why we named him that. I didn't even know that was his nickname until I saw it on a commercial during the election. Greg is supposed to be sending some pics and video to the blog, so I'll post those when I get them.

The kids and I are enjoying our time together. My sister, Heather, came to Shawnee from OKC today and we went out to lunch with Chloe. She brought the kids their Christmas presents since we don't know where or when we'll be having Christmas - and being the softee that she is, she let them open them early. They really enjoyed that. We played Christmas music and I put the Christmas tree up today. I love Christmas music. My favorite song is "Here Comes Santa Clause" with Gene Autry singing. We have this crazy tradition of having a white tree - not like a white flocked tree or even a solid white tree. It is a white wire tree that is actually made for outdoors. I bought it one year when we were getting ready to move and I didn't want to try to find my green tree in storage. I thought if I bought an outdoor tree, the next year we could use it outdoors and I would use the green one indoors. The next year rolled around and everyone - including Greg wanted to use the white tree again. So, this is the fifth year of the white wire tree... Kind of crazy, but we love it. We haven't actually decorated it yet, but maybe tomorrow. We have breakfast with Santa tomorrow at Maddie and Carter's school. It's an annual tradition and we've only missed it once. They really enjoy it and we always get their picture taken with Santa and I think it's always been the same Santa. I have some with Maddie, then Maddie and Carter, then Maddie, Carter and Chloe. If Mav was home, he would be in this year's pic (Ok, so I really wouldn't take him out into a crowd with all that he's been through, but you know what I mean). That makes me sad that he's not home, yet. I think we're getting closer, though. My last day there I spoke with Dr. Mendeloff and Dr. Chemelli about getting Mav home as quickly as possible - like sometime soon after he's off the vent.

I know a lot of you know Greg and I, but I'm quickly becoming aware that an increasing number of people reading this don't really know us at all. Greg is a physical therapist and I'm a Mediflight neonatal transport nurse. How bizarre is that? God knew that we would be able to take care of him. He's still going to have to learn how to eat and he'll have to have a lot of therapy to get him to where he should be since he's lost so much of his muscle tone. He may have to go home on some oxygen, we'll just have to see. If his kidneys don't kick in, then we'll be going home on dialysis, too. But, because of our backgrounds, we'll be able to do these things at home instead of having to stay in the hospital for several more months. The doctors are onboard with this plan. It won't be immediately after he's extubated, but hopefully it won't be more than a few more weeks after that. Greg and I were talking that this has been one of the best weeks - even in the midst of the kidney issues and everything else. It just seems like now we have some hope for getting Mav home and our family back together. I won't say back to normal... I think we'll have a new definition of normal, but that's ok. I'll post more tomorrow - Love you all - jc

Here's Maddie reading, "Brown Bear" to Maverick. For some reason the sound and video are off a little. If you look at Mav's mouth it looks like he's reading part of the time.

Here's Mav watching his aquarium. He can't quite decide whether to look at me or the aquarium.

TWO HANDS!

This was Mav today with his little booties on. His face is a little puffier, but overall he looks really good.

This was me holding Mav today. He did pretty well with it. I told him he had to get used to being up more, because the ride home in the carseat is a long one.

This was me holding him yesterday. I just held him with his little mattress and all because it would be easier on him. I didn't want to stress him out too much. He did just fine.

Ok, so the pictures go on here first and I'm not able to change that around, but I am up to six times for holding Mav... That's on two hands if you count with your fingers! I was pretty down on Tuesday with him not having any urine out in 48 hours, so I said lots of prayers and I think you all did, too. I went in to check on him at 5:00am on Wednesday morning and he had peed all over his bed! His nurse weighed the blanket and it was 13mls (about 2 1/2 tsp), and later in the day he peed a little more. He hasn't since then, but at least his kidneys are still making some urine. Home dialysis looks like it will be in the picture if things don't come around pretty quickly. It doesn't seem like it will be that big of a deal, though. It is hooked up at night for about 10 hours and then is off it during the day. If his kidneys don't make a come back, then when he's about 3 or 4 he'll need a kidney transplant. We'll just worry about that later, though.

So... are you wondering how I got so lucky to hold him? I will just say I think Dr. Chemelli (the intensivist) realized there was no stopping me - and I owe him a few quarters. Mav is doing well. He's up to full feedings via the tube and is tolerating them well. His IV nutrition has been turned off - yea! They continue to slowly wean his vent. For my medical friends he's on 30%, rate of 10, pressure support of 14 and peep of 6. We're hoping he can come off the vent sometime in the next week.

I'll post some more tomorrow. I'll be at home, so I won't have to worry about sharing the computers. Love you all - jc

Another pic of Mav. It's his first time to somewhat sit up. He has a boppy under him. He did very well with it. He's had a pretty good day today. They've increased his feedings again and he's almost up to full feedings. They're still continuous through the yellow tube that goes to his intestines. Hopefully his IV nutrition will be turned off tomorrow. He's weaned a bit on his ventilator and they're planning on weaning some more tomorrow. His CRP was up a little today (from 0.2 to 1) - when it goes up it can indicate infection. It's still not high enough to be worrisome, but it bothers me that it's up at all. He hasn't had any urine in 48 hours :( There is still hope that his kidneys could kick in... just keep praying. The dialysis is going well, though, and his BUN is down to 49, creatinine is at 1.4.

Greg and the kids are doing well. I'm planning on going back to Shawnee on Thursday and Greg will come down here on Friday morning. More tomorrow - jc

Little Mav looking at his mobile today.

Here's Mav today. He's been pretty bright-eyed and acts like he's feeling better. They've increased his feedings through the tube to 7mls/hour (that's about 1 1/2 tsp per hour), and have decreased his ventilator rate and pressure a little. He hasn't had any urine out today, but is tolerating two hour dialysis well. They're not trying to get any extra fluid off, just trying to keep him about even. He's getting physical therapy every day now - just working on stretching his little arms and legs - they're still really stiff from all the swelling and from the time he was paralyzed. He's been watching his mobile some today and resting well. The nephrologist said he thinks the cloudy peritoneal fluid (the fluid coming out when they do the dialysis) is due to lymphatic fluid. So far the cultures show no growth (that means no infection). So, that's encouraging. It is just concerning that his kidneys aren't really kicking in and the nephrologist mentioned if they don't, Mav would have to go home on dialysis - probably just at night. That's do-able, but to all our prayer warriors out there - pray that his kidneys will start working like they should. More tomorrow - love you all - jc