Needs another Vitamin K shot

Mario had blood work done again and unfortunately his INR (blood coagulation) isn't great so they're making him go in for another Vitamin K shot today. The nurse/xplant coordinator said that when she recalculates his PELD score he is now a 10, but this is without a new height and weight...if he has gained more weight (which I believe he has) the score might not be that high. We will get an official recalculation on 30 October when we meet with the nutritionist, surgeon, etc. again. We have his normal 6 month check up with the pediatrician tomorrow, so he gets another round of vaccines. The more vaccines we can get in him before xplant the better - so this is a good milestone. The next major one would be his 12 months. That's when you get mmr/varicella. These can't be given post xplant (live viruses are a no no once he's on the immunosupressents). Besides having to get multiple shots this week, he's doing well. He's eating more solids and seems to only like orange foods. We find this funny since he also has a VERY ORANGE vitamin supplement that he gets every morning...he has turned his nose up at apples, bananas, peas but likes carrots, sweet potatos and peaches... Go figure.

quick update...

Just waiting still...sorry for not updating for awhile. I'm in the middle of annual budgets at work (my group does all the staff planning for all of our contact centers). FUN. Mario gets blood work every two weeks. Thus far, he is gaining weight and seems okay on his vitamin absorbtion. We have started him on solids with the blessing of our nutritionist - which is nice. He also went to daycare 2 days this week. Monday was not so great - he cried and I ended up coming to spend time with him mid day...luckily it is VERY close to my work (same place Eva has preschool). Wednesday was a totally different story, he smiled, didn't cry when I dropped him off, and laughed/played with his new "friends". So, as expected with Mario's mellow, perservering personality, he is taking it in stride and making the best of it. Beyond all that, just prepping for Halloween, Eva will be a princess (did you expect anything else?) - Mario has some options between Chili Pepper, Lion and Teddy Bear. So, we'll see where the day takes us. I'll get some new pics up here...noticing it has been a month. Mario is getting "chubbier" which is so nice to see - true weight gain (some kids gain weight, but it can be just the enlarging liver/spleen - his liver is getting hard and bigger, but he is ALSO gaining true weight). We will see how blood tests go next week - then do another more thorough check in with the transplant team on the 30th. They will continue to monitor him closely and decide to list when his condition worsens. Would be nice to get him to 12 months before xplant so he can get his MMR/Vericelli vaccines...post xplant you can't do any live virus vaccines because of the immunosupressents (sp?). Happy Autumn! The leaves are just gorgeous out our way right now. Snow soon :)

Quick Update

I'm having a crazy week at work so this will be brief, but wanted to let everyone know that the transplant team met and discussed Mario today and have decided NOT to list him YET. They are sending us more details about their decision, but it sounds like they want to evaluate again in 30 days with new labs, etc. since he is still gaining weight and doing relatively well on his vitamin supplements. I'm suprised because everyone we talked to seemed to think they'd go ahead and list him...but I guess the good news is he gets some time to grow while things are functioning relatively well still. More later....P