Updates on Katie and Luke

Luke had a joint assessment last week with Alta Regional Center and SCOE.  The ladies who came out offered us our first glimmers of hope and help since we've been home.  

We will start weekly visits from SCOE in 2 weeks.  The person who comes out will not be doing therapy, per se, but instead will be teaching us what to do with Luke, to help him learn new things.  

Just the way they word things in the IFSP (like an IEP, but for toddlers) is so encouraging.  "Luke will learn..."  "Luke will progress..."  Seriously?  This is the first time anyone has said Luke WILL do something specific.  This is huge for me.  

Katie had her visit with the hand surgeon at Shriners.  I am very happy that we saw eye to eye on 1) doing surgery on her right hand, 2) leaving her left hand alone, and 3) having her hand surgery done AT THE SAME TIME as her upcoming heel tendon lengthening surgery on her club foot.  

Tomorrow, we see the foot surgeon.  While Katie's cast is off, she'll take a look and forecast when we should be able to lengthen the heel tendon.  We'll schedule the two procedures around that information.  

Also tomorrow is Luke's sleep deprived EEG.  This should be a lot of fun.  Or not.  We're supposed to keep him up late tonight, get him up early tomorrow, not let him nap, put him in a car for 40 minutes and not allow him to sleep during the ride.  (Sounds like a traffic accident waiting to happen!)  Then, we're supposed to take him into a strange hospital, let strangers slather up his head with gritty gel and stick electrodes on him, and then lay him down in a strange room and expect him to sleep on demand.  Fun times, I tell you.  I should go charge the battery in my little camera so I can share some of it with you.  

To those who have been praying for us, thank you!  

I had a really sweet playtime with Luke yesterday after his nap, and I felt... softer toward him.  

Please continue to pray, as I'm, er, unwell (graphic descriptors omitted for your benefit) the last few days, and I need to get better to tackle all these appointments!  I'm having some testing done, but a new and disturbing symptom has cropped up, and I would really prefer to have it all just go away, thankyouverymuch.  

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