Sadly, we no longer have use of a laptop, so updating hasn't been as easy. We can use the library here at the hospital, so I'm doing that now to post the latest news.
Saturday afternoon after 5 unsuccessful attempts to draw blood from Marie for blood tests we were discharged. We went to Greeley to Luke's Mom's house for Saturday afternoon and all of Sunday. Luke's sister Stacey took Josie with her to her house on Sunday afternoon and Josie is still there. She's having fun with her Aunt, Uncle Glendon, and cousin Gavin. Right now it really is the best place for her to be.
On Monday morning we came back down to Children's and met with the Metabolic Dr's. At this stage of the game more testing is needed for a definite diagnosis, but we do have a bit of a game plan. When we get home Marie will begin some physical therapy to keep her from falling any further behind physically (she'll need extra help learning to sit and walk as her body is weaker than the norm). We also will need to keep her out of situations where she's around a lot of young kids. This means no more coming with Josie and I to ballet, we need to sit up front in church not in back with the other families with young kids, no more using the cry room where lots of kids have been etc. This is because Marie really can't afford to get sick. So much of her energy goes to just functioning normally, if she gets sick it could really set her back. So, from this point on, if anyone has the sniffles or otherwise, though we'd love to see you we really have to ask that you only visit our home if you're well.
Monday evening we were re-admitted to the hospital, and yesterday (Tuesday) the put a pic-line in (line running from Marie's inner elbow to her heart) to do the "free flowing" blood draws required for most of her testing. She did well with the anesthesia and came out like a champ. We got some of the blood draws done last night, and another done this morning. Right now they can only do one more blood test today before they've drawn the maximum amount of blood Marie can give in a day (15cc is her max). So, for the additional testing needed we'll have to wait until tomorrow morning. This means another night in the hospital for us, and while it's the best place to be, every one's been as nice as possible, and given us just about everything we need I'm starting to hate it here. Luke and I are really missing Jo and would like to get home.
Also, yesterday was Luke's birthday (happy 27th!) and we'd really like to celebrate his birthday properly. Being without our Josie is definitely a trying thing. But, she's doing wonderful with Stacey and Glendon so I have to take comfort in that.
Marie's good, I think she gets bored easily here. They have toys available and so we've been using some of those, but I honestly think she misses her sister and the comfort of rolling around on the floor and just doing "our thing".
Right now that's all the news I have, hopefully we're home tomorrow (however, the way things have gone I'm hesitant to place my hopes on that). Thanks to all of you for your continued thoughts and prayers, we'll keep you posted. Much love- Luke & Shan