First of all, we awoke to hear of the unexpected passing of sweet Avery from Avery's Bucket List. As the mother of a child with multiple health issues, its always hard to acknowledge the unknown for our children. It hit close to home for me.... my biggest fear is losing Addison to this nameless, faceless fight. So, today we are in prayer for the Canahuati family and hope that God will soothe their broken hearts in the days to come and that they may continue to find ways to celebrate little Avery's short but fulfilling life. Avery's Bucket List has reminded me to utilize the blog to commemorate all the stuff Addison does so we will always have it to remember this time.
Unfortunately, this morning she seems to be up to her old tricks again. She projectile vomited again this morning, and has been lethargic most of the day since. I haven't even called the doctor about it, because there's really nothing more anyone will do at this point with that. They could admit her, but she only throws up like that once every few days so we would likely be home before she does it again. She sees the GI doctor for the first time tomorrow, so maybe they will have some ideas as to what is causing the vomiting episodes. She's still having pain and screaming episodes as well. I really wish she could talk :)
At lunchtime we had to take the girls to St.V's for bloodwork on both Addison and Audrina. Addison hasn't had to get poked in a couple months so it was very traumatic for her - I don't think she remembers any of it so she was caught very off-guard this time. When the put the tourniquet on her, her Reynaud's acted up very strangely, her thumb area swelled quickly and turned almost black. It was perfectly confined to just one large spot on her hand. This was enough for me to get mad that we have put off finding a pediatric rheumatologist (there isn't one in Toledo from what I've found, and they only see kids over a certain age.) I called Cincinnati and am making arrangements to see the rheumatology dept while we are there. She stares at her hands constantly and I know they are bothering her.