Tuesday, June 30, 2009

I Did It By Myself!!

Sophie was so determined to do this puzzle and after a little coaching on "how to do a puzzle" from mom, she sat here and kept working until she "did it all by myself!"  She was so proud and so was I.  She wanted me to take a photo so here it is.  Way to go Soph!!  (yes, her shoes are on the wrong feet, but one thing at a time :)

Friday, June 26, 2009

Mack's New Hat

The giraffe hat lasted a good 2 months. Mack never took it off except for swimming lessons...he even slept in it. Well, it finally was beyond repair and after some coxing, Mack was convinced that the monkey hat was pretty cool. He is now wearing it non-stop. Thanks Shelly, Macey and Darcey for sending the replacement hat.

He was wearing it today while Grace, Sophie and I were wearing crowns from betterthannormal.org. This was the conversation....

Me: "Hello, I'm Princess Mommy"
Sophie: "Hello, I'm Princess cess Sophie"
I was expecting Mack to say something about being a monkey, but this is what he came back with...
Mack: "Hello, I'm a trash can!"
Hmmmmm...well allrighty then?

Thursday, June 25, 2009

Update on Grace

I know, I know...I've been busy!! I've been meaning to update everyone on Grace since the surgery but we have been on the go. Grace is doing PT twice a week and special needs yoga 3 times a week. She has been working really hard to build up those muscles that had been covered by the spastic tone until the PERCS. I still wasn't sure the first week afterwards that we had done the right thing by going through with the procedure, but I can say now...we DID the right thing. Well, I guess we won't really know for awhile but right now she seems to be getting stronger and stronger. She sits better unassisted and cruises around so much easier because she doesn't fight the tone making her legs cross.   She is so incredibly motivated to move, move, move.  She is VERY close to getting into sitting position on her own and standing unassisted.  We will just keep working.  Check out the videos below.  She gets her casts off on Tuesday.

video video

Wednesday, June 17, 2009

Friday, June 5, 2009

Galveston, Oh Galveston



Well, we did it.  After much prayer, much discussion and much research we took Grace to Galveston to have PERCS with Dr. Yngve.  We met with the doctor and his team on Monday to discuss the procedure and Grace's situation.  After several  hours with his team, we decided to go forward with the surgery the next morning at 7:00.  Needless to say, I didn't sleep much Monday night and was even second guessing everything as we left our hotel at 5:30 am the next morning.  Is the the right thing?  Is it the right time?  

This is what was done...
-gastroc recession
-semitendinosus percutaneous tenotomy
-myofascial lengthening single hamstring (Timi let's discuss this)
-percutaneous adductor tenotomy
-biceps brachialis lengthening

She has cast from her toes to her knees and sleep in leg splints and arm splints.

I know it sounds like a lot but Grace was up and walking (with my help) yesterday.  She is doing great but now the REAL work begins!  She even rode her tricycle this morning.  She is, obviously, pretty weak but I am so excited about her recovery and the possibilities.  A PT is coming to the house tomorrow morning to help me develop a home program.  She will also be doing yoga on MWF and then back to CE in July.  We will be very busy!!!

Wednesday, June 3, 2009