Saturday, June 2, 2012

Week in Words and Pix (and neuro info)

Okay, some of these are not from this week because I just got access to more grad pix! And from these pix I know I want me this camera *hint hint Daddy-O*
Little Miss Silly
A dose of reality. I might be in denial!
Kambry, the Overthinker!

Handsome guy!
Deep conversation :)
Love this!
Puleeeeeze, can I have food!
Cup o' java for the teen.
And now back to our regular programming (translated: pix from my dumpy camera)
At the grad ceremony. Pretty sure Daddy-O is asleep :)
Kambry's kreations!
Wednesday night, this is where the Littles huddled up......while hail was pounding our place.
But Thursday was a new day with an appointment with Kasidi's neurosurgeon.
We learned a lot!
First, we will schedule surgery soon.
Miss Joy has a tethered cord in the lumbar (lower) region which needs to be untethered soon. This tether could be part of the reason for the spasticity in her legs, hindering her from walking. Also, if left unrepaired it will eventually affect her bladder function and could keep her from walking, permanently. So we are going to take the first surgery date offered us.
There may also be a tether in the original meningocyle site (thoracic, upper region) of her back, but the lower is the priority.
There is a cyst on her thoracic spine which we will monitor.
She does have fluid in the ventricles, which is an indicator of hydrocephalus, but she has no other signs or symptoms of it, so we will see an opthomologist to check for pressure.
Over all, it is very good news!!!
I am still confident of this:
I will see the goodness of the Lord
in the land of the living.
Psalm 27:13
We see His goodness every single day!!!


Jennifer said...

Your house looks SO fun! I was so excited to learn that Kasidi is potty-trained - I know very, very few kids with SB who've achieved that. So awesome! I know many people with SB (including myself) who have fluid in their ventricles but who have never required shunts (internal tubing to drain the extra fluid into the abdomen) and I pray that Kasidi will go her entire lifetime not having problems with hydrocephalus, like me and so many people I know. I'm also praying for her upcoming surgery - I've had spinal cord detetherings five times in my life (at ages eight months, 5 years, 11 years, 14 years, and 19 years) because the cord can sometimes re-tether after surgery, especially after growth spurts. I'm praying for Kasidi's surgery to go well and also for no re-tethering afterward! I'll be living and breathing SB this month - I'm a delegate to the international conference in Stockholm, Sweden in about a week and a half, and after I get home, I have about a week before I head to the national conference in Indianapolis. I've been fully funded for both trips and can't wait to see old friends and learn more about working to improve the lives of children and adults with SB.

Jodi said...

ohhhh so fun!!!! Love Daddy - O napping at the Grad ceremony! :) Love y'all!

Shonni said...

I love seeing pictures of your family. Congrats on the graduate also.
So sorry about the hail...praying the crop is still in great shape though.

Serving the King said...

I agree, your house always looks like such a fun place to be! I just want to pour myself a cuppa coffee and come sit on your couch and watch the fun unfold! :) Praying for sweet Kasidi! Sincerely, Sonia...your friend who is not nearly as fun as you.

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