Wednesday, October 14, 2009

How's Gavin...

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I was reminded yesterday that I haven't really updated on how Gavin is doing.  Sorry about that.  Gavin is one difficult child to manage.  There are so many variables going on in his little body that helping him feel good and keeping him stable in often easier said that done.  While, he has been a little more alert he is still having times during the day where he is completely "checked out."  Even when he is alert it just not right.  He is having lots of tremors and at times he is still becoming completely out of control and a threat to himself or his tubes.


We are working hard of trying to find medication to help him.  It's just hard because we don't know what exactly is going on.  Some of what we are seeing his central nervous system being affected by the Mito, some of what we are seeing is pain and other things are just plain old "I'm three" behaviors.  Trying to figure out which one of those issues is visible at any given moment if very difficult.


Gavin's hemoglobin is back down to 6 so we should be going in this week for a blood transfusion.  We will be heading down to duPont tomorrow to visit the wheelchair clinic and make some adjustments to Gavin's chair including getting a O2 tank holder, getting a larger headrest and hopefully getting a new joystick that will be easer for Gavin to maneuver even when we is very lethargic and weak.


Our meeting with the Reading Eagle went great and we had lots of fun hanging out at the house with lots of great people.  Tonight Adam and I will be heading out to pick out hardware for the kitchen, firming up our choices of countertops and also siding.  We will then head over to the house to begin taping the trim to prepare to paint!

9 comments:

Heather Nicole said...

I thought I saw a smile hidden under that paci :)

Have fun taping!

Tiffany Lockette said...

I agree, there is a touch of a smile there. I hope many more smiles come soon.

Tiffany Lockette said...

Are there still shirts available?

therextras said...

Thanks for the update and photos! His eyes say he was present and accountable the moment of each of those photos.

Barbara

Anonymous said...

Karen,

We go through how much of Willy's behavior is the autism & how much is because he is 15. That keeps life interesting. I am excited for you to be in a house that is fit just for your family. Love, Evy

Cassie J. said...

Looks like Mickey Mouse ears in the photos! Love reading your blog. Many prayers for your family.

Timothy Ethan said...

You definately have 2 adorable children! I love reading your blog, so I have nominated you for the Lemonade Award.
Praying for the family.

Donna

JayCee said...

I love how you wrote "we is very lethargic and weak." I'm sure it was a typo but I bet it explains how your whole family feels sometimes! We are praying that you will have multiplied time and energy these next couple of weeks!!

Heidi said...

Awww, so good to see a smile on his cute little face. Have I ever told you what a sharp dresser he is?! Always dressed so stinkin' cute, no matter how he's feeling! Thanks for the Gavin update, and Im also excited to hear about your house too! Continued prayers for you all, hugs to your kiddos-- Heidi and Jack 6, Mito I+III, IV