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 :)

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?

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.

Wordless Wednesday

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!!!

Wordless Wednesday

Mack and the Mohawk

I took Mack to get his haircut Saturday. Abe usually takes him because I just don't have the energy. Mack was great and we decided to change it up a bit. What do you think?

Wordless Wednesday

A Pretty Big Deal

For most of you these photos may not look like much, but they look AWESOME to me!!! Grace is kneeling by herself!!! She can now play with Mack and Sophie at the train table and on the ottoman without me holding her. Now, I never go too far but she is loving this new part of her abilities. I'm ever so proud. Thank you God for every small step in progress...we are so blessed.

ps...yes, Mack is STILL wearing the mutilated giraffe hat.

Child With a Disability Essay

I have so much to blog about but just can't get to it.  Writer's block...moodiness...laziness? Hmmm, maybe. Or maybe it's all just too hard to think about sometimes.  I love this essay.  It speaks volumes to/for me.  I'm looking for something to make a difference right now...help me find some normal.

Child With a Disability

A powerful essay about parenting a child with a disability by Judith Scott, runner-up of the Life Lessons essay-contest.

by Judith Scott

Our lives, my husband’s and mine, fill with the role of parenting a child with disabilities. We become champions of the cause, joining groups, researching new developments, taking part as vocal advocates for our daughter’s rights. Sometimes this all feels fine and we soar with competence, proud of the manner in which we are managing. Sometimes it chafes, this role for which we did not volunteer, and we are quietly resentful, then guilty. My friends say they don’t know how I do it, my family say they are so proud, and I thrive on the accolades, smile a bit brighter. But behind that smile, a ghost lingers, and the loss of the perfect life I had planned sits heavy. 

Before Emily, there was a woman who was a teacher and a wife and a friend. Now there is just Emily, and the woman struggles for her bearings, tries to find her footing. I see this woman in the mirror one day and take a long moment to recognize myself. It is time to find the “new normal” that will define my life. I search for the thing that will make the difference. At first, it is running, the simple act of lacing up my Sauconys and hitting the road. Exercise helps and heals. Running segues into racing, and although not an athlete, I train and plan and accomplish modest goals. Local 10Ks and marathons expand my world, and I embrace it with unabashed selfishness. 

Running makes me brave, and although life with Emily is still turbulent, I have a renewed confidence. Another daughter comes along, followed by a son, born almost exactly 10 years after Emily. We cobble together a family, now not so much defined by the disability within it but by the love despite it. Emily’s siblings speed through typical development without a hitch, gladdening my soul and adding another layer of respect for my firstborn, who struggles so. The pain diminishes, and acceptance comes in. 

My husband and I always mock the fuss made over graduation celebrations. We wonder when graduating from elementary school became such an occasion. Surely no one put on the ritz for us, back in the day. But times change, as they will, and the day is upon us, as Emily nears completion offifth grade. This milestone day is marked by students all dressed up, speakers who wax nostalgic, and a video montage of the kids’ elementary-school years. 

I sit in my cushioned seat, only half-cognizant of the speakers’ words. I wonder how Emily is faring backstage with her class, lined up for the processional. Her full-time aide is there to assist her, but still I am anxious, twisting the program into a wad on my lap. Finally it is her turn to cross the stage, and cross it she does, with a nudge and whispered directions. From stem to stern, it is perhaps 100 feet, but Emily’s journey is more than that. The outgoing class stands to recognize her walk; they cheer, holler her name. 

Who knew that an elementary-school graduation, rife with its tired clichés and tacky streamers, would crystallize all those years of searching for peace? For now, in this moment, on this day, it is finally clear. I was mistaken. The albatross of disability in fact turns out to be a strand of uncultured pearls, each in its varied imperfection a pure and precious gift. No class I have taken, no country I have visited, no book I have read, has taught me more. This child who does not speak, who does not fit in, who is different wherever she goes, is a lesson to me.

Wordless Wednesday

Grace Crawling

We have been working on crawling on all fours for a long time now. Grace had the commando crawl down for awhile but this is a big deal!! It's hard work and takes her some time to get around but I'm SO proud of her.

(Oh and yes that is Sophie cleaning in the background. She thinks she is Cinderella :)

Wordless Wednesday

Funky New Boots

Grace has some cool new boots for conductive education. I was very excited that Timi thought it was time to put her into these type of shoes.  Some of the other children at ACCDAT had worn shoes like this and we have been working up to this point.  Way to go Grace!!

We have attached a thin piece of plywood to the bottom of each boot.  The plywood is wider and longer than the boots and forces Grace to stay off her toes and keep her feet apart when walking.  Okay, they're actually not the most fashionable but they certainly are very functional.  She does great in them!  I going to get some sparkly pink laces and then she'll be styling.

Sophie sees I'm taking photos and wants to make sure she is included.  Look at her posing.

Minivan Yoga

I love my yoga classes.  I need my yoga classes.  I crave my yoga classes.  I can only go when the kids are in school and I have no morning meetings.  So I only get to go about 3 times a week.

This morning, as I was driving to school with my right arm twisted around to the back seat behind me holding Mack's hand, straining to look over my left shoulder,  I realized that I was really getting a good stretch...I am doing some sort of yoga...Minivan Yoga!  There are also "poses"I must utilize to pick up dropped food, toys, etc in the back seat and there are often times when both Mack and Grace want to hold my hand at the same time.  This must be done safely and effectively.  It is an art form!

Hmmm...When you don't have time to go to a yoga class, just do it while you are playing taxi cab with your kids.  

I am going to make millions!!!  Mommies everywhere will want to do this.  There will be a video, a book and I will be asked to teach classes all over the world!

I knew if I thought hard enough, I could come up with a great money making plan!!!  Okay, who wants to be my first student?