Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Wednesday, May 7, 2014


#1. Wanna know what stinks?? (Besides skunks and fluffs) having a bike ride cancelled that you were really looking forward to. I know Jeff won't be disappointed long because he knows it's trivial... But, it was still a bummer.. Luckily, we have it mostly resolved and he is going to rock a new one the next week, thanks to my little sisters help... Then the Ghost ride 100 is still taking place, it's just been moved to August. I hate to even see Jeff disappointed. He posted something about it on FB, but left it kind of a open statement.. It made his friends sort of panic. So in the future he will be stating why he is disappointed as not to cause alarm:) 

#2. We got the results back. Alex's body did not respond to IVIG. He is still 85% sensitized. As brick-wall-ish as this feels, there are so many things that can be worse... It is, what it is. I am always pretty frustrated on bad news days. With a little sleep I see a little clearer and can make heads and tails of information. This means that our chances of matching a heart to Alex will be pretty slim. It means watching him deteriorate. It means we have fewer options. It doesn't mean we give up hope. It doesn't mean we stop living each day like we are normal people. When Alex prays he asks that, Teagan and He get new hearts soon. He prays for friends that are sick. Everyday is a gift. 
His new medicine did improve his liver count. See, some good in there amongst the ick.

#3.   I went to follow up and it looks like my issue has stumped my doctor.. Ha! He hasn't ever seen what has happened to me, happen before. He isn't a young guy either. We are all about crazy at our house. So I have to take it easy still. I can't believe these words as I am typing them but.... I miss working out and would really like to be better already... You don't appreciate your body until something isn't working full speed. I get to go back in ten days. In the mean time I am on a mission to research and get myself better. Luckily I have some great friends who have been through this too and I am asking them a zillion questions. 

That's our three... Glad that's over, now on to good:)

1 comment:

The Simmons Family said...

Darn Antibodies..hang in there. They could just drop on their own or over time!!