Wednesday, May 13, 2009

Don't tell me it's going to be OK

Just going to warn you guys, it hasn't been a good week here, proceed at your own risk.  You want the bad news first or the "that really sucks" bad news.

Ok, we'll start with the bad news first.  SK and I went to see our favorite urologist (doesn't everyone have one) on Tuesday (May 12).  Sk still has the same kidney stone that she has had in her left kidney for going on 8 months now.  It is still in the exact same spot that it was 4 months ago and then 4 months ago from that.  Her urologist feels that it needs to come out b/c it can cause other stones to form the longer it remains in there and he also feels that if she can get rid of this one there may be a chance that she can remain kidney stone free, which would be great, if this weren't the bad news post.  The problem is the location of this one, it is in the worst spot possible, of course it is, it's Sophie and he cannot get to it w/o great risk to SK's plumbing if you will.  So we are waiting another 3-4 months to get this checked out again in hopes it may be in a different location, unless she becomes symptomatic (unexplained fever and vomiting, can't wait) which would mean it's on the move.  Bad news for Sophie is that he thinks this is a pretty decent size stone for her to pass and he thinks she will be symptomatic with it but at least then he said it would definitely be in a position at that point where he could remove it easily.  That now concludes the very boring kidney stone update that I thought y'all couldn't live without.

Onto the "that really sucks" bad news.  Sophie Kate went to feeding clinic this past Monday, which actually went fine.  They wanted her scheduled for a modified barium swallow study (mdss), it determines what kind of things are safe for SK to eat and swallow from liquids to thick consistencies like pudding and honey.  SK had her swallow study done on Wednesday and the results were not good to say the least.  She failed the swallow study and is not cleared to have anything by mouth for 6 months when they will do another swallow study in hopes of I'm not sure what.  I don't have the energy to go into all the details about this right now.  Everyone was shocked and by everyone I mean her therapists and me, no one saw this coming.  Even the Occupational Therapist that was doing the study told me just before we started that she could tell by looking at her that she wasn't going to fail.  I am so sad, I have worked so hard on her oral feeding and now what.....I can't believe this, see I told you it really sucks!!

When we were finally leaving Children's we got stuck behind the most darling little girl toddling along after her daddy who was walking slowly and patiently waiting on her to catch up.  As much as I tried to get around them, the hallways were too busy and I couldn't, so there I was forced to watch this precious little girl toddle all the way to the parking deck.  That is supposed to be my baby girl toddling.  Toddling as far away from Children's Hospital as possible, toddling at the park and in our backyard.  Toddling to the little play kitchen and fixin' me some pretend food and then toddling to get her babies so that I can help her change their clothes and then toddling to kiss and hug me goodnight before she toddles to her perfectly normal bed in her perfectly normal room.  Toddling everywhere she goes....just know that things are not ok over here and they're not going to be ok.  God may give us the strength to accept and deal with all this crap, but just know it will NEVER be ok with me!!!!!

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