Wednesday, September 3, 2014

kindergarten and some updates

Hi everyone, sorry for the delay again. We still don't have internet at the new house and updating the blog in my phone is sort of a pain, so ignore the spelling errors :)

Well miss Lilliana has started Kindergarten! After much prayer, debate,  and back and forth we decided that having Lilli be a "normal kid" as long as possible is for her best interest. I was petrified the first day, and seemed to be about 2% less today lol. She is so happy and seemed to grow up even more and has been the happiest little kiddo the last few days.

Speaking of keeping life normal... there is a slight chance (if our team at Boston agrees its best) that we might stay in MN until Lilli is ready for a true transplant evaluation. We know thay currently she isn't a canidate due to her lungs and pressures so we pitched the idea of having her cared for here at Childrens Hospotal of MN until she becomes more "stable". Dr Blume at Boston actually trained the new cardiologist we will see at Childrens and they have a very close working relationship established. Dr Blume was presenting Lillis case to the whole team at Boston today and we should hear tomorrow whay the game plan is.

Switching to a new hospital will be a change, but based on every interaction I've had with Childrens thus far it should be a GREAT decision.

So for now things are looking up as far as day to day life goes.... the long term outlook still needs MANY PRAYERS. No matter how amazing Lilliana apprears on the outside there is still so much "wrong" going in inside of her.

All I know is that i want to make everyday with her a celebration. I need to treat her like she will grow up and I need to let her be a kid :)

I just pray for a safe and HEALTHY time at school for her as long as possible.