Thursday, September 1, 2011

Quick Week to Date Overview

It's been a fairly busy week.
Monday ~ Little man had his in home speech and signing.  He did decent, but was exhausted so didn't learn a lot of new things.  We however learned all of our color signs.  Ari had her hearing tests in the afternoon.  She passed all of them!  We were super relieved about that.  Emily had her first day in strings.  She was super excited.  They didn't do much on monday, apparently most of the kids didn't have their instruments yet.  Emily can't wait to get started with the violin.  After school we met with Ben's new case managers and went over alot of his information and paperwork, preparing for his IEP mtg.  We are really impressed with his managers here!

Tuesday ~ Eli had his in home ASL (signing) tutor.  We learned alot.  We learned all about basic beginning and ending conversation when we meet new people.  Then we had Ben's IEP mtg.  Alot of good information and a decent base plan in place.  There are definitely still some concerns and everyone is working on a good plan to put in place.  One of the biggest concerns is Ben's eating and drinking.  He has lost over 2 lbs since starting school, as he is basically refusing to eat.  He's been drinking maybe 5 or 6 sips of water a day.  Everyone is working hard to get this all resolved.  Later in the afternoon Eli had his 1st appt with the muscle and nerve clinic.  We were super impressed with the doctor.  He believes that it's mitochondrial myopathy.  He believes that the seizures are causing a large part of the issue and that it's simply neurological degeneration ( his word not mine, because I don't like words like that).  He's like, "obviously as you know with mitochondrial disease the brain alot of times will begin a degeneration process, and we are obviously seeing that with eli."  Like always I just wanted to scream at him to stop saying those things.  Those are the kind of statements that bother me the most.  Back to point...He doesn't believe that botox, or casting, or surgeries are the best choice for Eli right now (neither do we), because he believes at this point none of them will help him to walk.  He ordered a soft side helmet to help protect his head.  When Eli gets tired he falls over frequently.  The goal is to protect his head the best we can.  We will continue to follow with him in clinic.

Wednesday ~ Eli had his PT.  He did super awesome.  She put him in a gate trainer and he loved it.  This was his 1st time in one and we weren't sure what he would think.  He took 2 tiny steps by himself!  I was beyond excited!  She's going to try him in it a few more times during therapy and if he continues to do well she will get one ordered for at home!  Wed night began Eli's sleep study.  We got here and they got him all hooked up.  He fell asleep pretty quickly. 

Which brings me to Thursday morning.  This is where we still are.  He was badly positioned so the sleep tech shifted him at about 3:45am.  He struggled to get re situated and back to sleep.  He's finally sleeping and i'm now wide awake.  We leave for Wichita today and I'm ready to get away from it all for a few day!

Here are a few pictures.
Eli's new soft side helmet

Trying out the Gait Trainer at PT

Ready to go to sleep for his sleep study

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