Wednesday, November 14, 2012

checking in

It's been alot. 
I had surgery on november 2nd on my right hand.  They ended up having to cut 2 ligaments and shave down my tendon.  I got my stitches out and large bandage removed 1 wk after.  I have a smaller brace now and am able to start moving my fingers, but not my wrist.  I'm not able to hold anything yet and am still having to only use my left hand.  that makes everything very slow and frustrating, but I'm slowly figuring it out.  Next week I get to start practicing with my wrist and if still struggling then he will start me with some occupational therapy.
I also met with the neurosurgeon last week.  My surgery is scheduled for January 8th.  He said I will be in the neuro icu for a few and then on the floor for a few.  Then a minimum of 8 wks recovery at home.  We are rushing to get life set up.  We have so many things to organize between eli's nursing care and ben's respite worker. 
I meet back with my primary care doc next week.  The docs have all decided that we need to run some more labs, do some hearing tests, discuss my vision loss more, and send me to a geneticist for.. yes as most of you have guess...mito testing.  It's been talked around for a bit by us and the docs, but is now being strongly suggested.  We haven't said anything up till now, but we are being asked frequently so it's easier to simply mention it at this point.
I'm exhausted and sore.  My mind is constantly spinning.  I can't completely focus on anything, although my mind is always going.  I've moved past the crying phase into numb.  I've been in the numb phase many times as we have made our way thru Eli's journey, but it feels strangely unfamiliar when it's in relation to my journey.

Jace's GI issues have been flaring and his GI doc has been working hard to get it back under control.  He's had tests run and meds changing.  Hoping to see some relief for him quickly.

Eli is keeping us forever busy as well.  He's back to choking and gagging.  It's not yet as often as it used to be but alot more violent and large o2 drops (70's and 80's).  we have been draining his stomach frequently to try and help.  His Gi doc thinks that the nerves in his stomach are becoming so sensitive that any sensation is causing them to fire.  He's also concerned that Eli's body may be building up an immunity to his robanul which is VERY bad news.  They are changing around some of his meds and hoping to see some changes.  If this doesn't help over the next 2 weeks there will be more changes that bring more risks. 
We've also been working hard on Eli's vision.  He's having a full functional vision evaluation next week.  It's very clear that his depth perception and peripheral vision are shot.  we are hoping to find ways to strengthen them and help him be able to safely move around unfamiliar environments independantly.  In our home we use red tape on danger areas and we never move furniture. 

The other kids are staying busy.  Alot is on their plates and on their minds.  Our kids are so strong and amazing!

As my hand strengths returns i will try and update more.  this update has taken almost 1 1/2 hrs to type.

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