Writing Writing Writing

Ivan asked Paul who writes the blog...I do most of the writing. As you can see from the previous entry...pics and vids...that's Paul's entry. He says I write too much, he is skim reader. I'm writing this so we can remember every detail. We regret not journaling Lauryn's life which has been just as amazing.

Paul likes to make his children work for everything, as you can see this is starting out early for Kaitlyn...she has to push weights to enjoy her soother...he also likes to make Lauryn boogie woogie before giving her anything.

Kaitlyn is having a quiet day...she hates sitting in dirty diapers and gets worked up. This morning she started crying so I checked her diaper...she got so worked up crying that her heart rate starting dropping. The nurse said that for Kaitlyn when she gets into this state, it's like us trying to take a deep breath through a skinny straw. I just tried it with my Starbucks straw...so I guess it has to be skinnier than that.

Depending on who you speak with you get different reports. Our nurse yesterday was concerned about Kaitlyn's belly and liver because bloodwork showed that her liver enzymes were higher than usual. This caused me to worry that she may still have problems with her liver. But I just spoke with the GI who said that it's ok for this to fluctuate and it's not high enough for them to be concerned about. The GI team are actually quite happy with her liver function and hope that as her transient anemia resolves itself that her bilirubin will go down and that her liver and spleen will return to it's normal size.

Today I met another couple from Fort St John. They have been in the ICU for two weeks because their eleven year old son who also has Down Syndrome has pneumonia. This is the first real person I have met who also has a child with Down Syndrome. She came over to meet Kaitlyn.

Please pray for Kaitlyn to astound the doctors and nurses with supernatural weight gain. But not too much! Just the right amount.