Wednesday, April 25, 2012

Bullying the Autistic - in their own classroom

Father wires autistic son, discovers teachers bullying students

This might be one of the most disgusting cruel, heartless and downright rotten display of human beings on Eearth. 

It's a 17 minute long video and worth every single minute. All I can say is karma people...
I signed the petition - there is a link on the YouTube video.

Tuesday, April 24, 2012

Celebrate! Will is 3

Ahh, my little boy is three. Toss all this Mito crap out the window. I still remember bringing Will home from the hospital, scared that I was going to screw it up, excited that we had such a beautiful perfect baby. That little guy changed my life, our lives, in so so many incredible ways. Again, minus all that Mito crap having a baby changes everything. I love when my little guy still wants to give hugs and cuddle up in my arms like a little baby.

So, add some of that Mito crap back in and I decided Will needed – ok, I NEEDED – a freaking kick butt birthday party. If this is the last one it was going to be the best one. I suppose if I keep this up next year we’ll have a Ringling Brother attend the party. That’s totally a joke, btw.

One night a few weeks ago, my sister Lisa and I were sitting around brainstorming party themes and the circus party idea was hatched. From there I just kind of went a tad over board. Not totally, but just enough.

So on Saturday we had the birthday party. We asked that in lieu of gifts to consider making a donation to Will’s Mito clinic through the Memorial Hermann Foundation. We were able to raise nearly $1,300! If anyone else would like to add to the contributions please let me know. It was really an amazing feeling to be able to give back to a group that has given us so much in such a short amount of time.

The cupcake decorating party with my mom and sisters.

The awesome banner Lisa made "Celebrate Will is 3"

So I'm totally bragging on myself here, but I made the cake.

Snocone cupcakes, popcorn cupcakes and an attempted, but dismal failure for cotton candy cupcakes which turned into sprinkles.

Getting chased by daddy in the carousel bounce house

Hanging out with Papa and Grandpa and the balloon sword of course.

Getting his face painted with an Elmo

Birthday boy blowing out his candles

Unwrapping some gifts with Carson

On Tuesday, Will’s actual birthday, we started the day with a visit to Dr. Koenig’s office. We brought donuts and money – a winning combo. Sweet Missy got Will a birthday boy balloon and he was pretty pumped about it. He also picked out some really girly stickers, but that’s ok. He had all the ladies around for his b-day.

Mito update: this might have been the first Dr. Koenig appointment that I actually didn’t cry and left feeling like I can do this. I won’t detail the previous ones, too painful. She thought Will was looking really good and that his walking had improved as well. She thought she might have noticed an increase in what I’d call fidgeting but medically is known as chorea. It’s non-stop movement. So, we just need to watch out for that.

We’re also going to get his eyes checked. With all the things he knows and can pull from memory, he doesn’t know any of his colors. He can do some counting, animal noise associations and he can tell you everyone’s lunch box at school and places he’s been, but no colors. That’s just weird to me. So, we talked about him possibly being color blind etc. Not a crisis here as I don’t care if he knows his colors or not, but I’d like to understand why everything is blue, according to Will.

So, back to his birthday. Dropped him off at school where he had cupcakes as a special snack. His teacher snapped a few pictures and sent them to me!

Neil picked Will up and we all went to dinner at a local favorite, then we stopped by Fire Station #6 as a big surprise for Will. He LOVED it. He started crying when we left and wouldn’t even tell the firemen thank you because he was so mad (and tired) to go home.

His little boots wouldn't even fit in the fireman's big boots!

But the heavy coat worked out along with his birthday boy crown from school.

After the fire station we came home to Papa on the front porch so that was a big surprise for Will too. They listened to music in my dad’s car – a huge favorite for Will. After he left we sang happy birthday, had a cupcake took a bath and went to bed.

All our pictures from the birthday party and fire station visit are posted here.

Will has been coughing on and off since he went to sleep. I’m really REALLY hoping that this cough/congestion stuff makes a quick departure. He’s almost back to baseline from his March hospitalization and he really needs a chance to catch back up.

Happy Birthday Baby Bear. Mommy and Daddy love you forever and ever and always. We're so proud and honored to be your parents. Thank you for the gift of you.

Monday, April 23, 2012

ECI Graduation

After we found out Will has Leigh’s disease I pretty much can’t see him past the age of five. I know that’s not always healthy, but for whatever reason it helps me compartmentalize a lot of unpleasant stuff. Obviously, I thought I would never get to see Will graduate from high school and walk across the stage in a cap and gown.
Well, I got a little taste of what it might be like and I think this memory will likely stay with me and I’ll reflect on these pictures whenever his peers graduate from high school and all the families are fussing over gown adjustments etc.
For the past two years we’ve worked with Early Childhood Intervention (ECI). It’s a state run program that provides therapy services for children under the age of three on a sliding scale payment system. We have absolutely had a great experience with ECI and on Monday, April 16 Will officially graduated from ECI. They do a little cap and gown ceremony etc. You can see more pictures here.
Ode to our friends:
Ms. Melissa – our developmental therapist who helped me figure out how to get Will to suck on a sippy cup, instill good discipline and overall be an incredible sounding board for us – THANK YOU.
Ms. Risa – Will’s occupational therapist who taught me and Will how Will could and should chew. I think she eventually had to “graduate me” as Will was doing his work, I just was paranoid. Once you see your child choking, grasping for air and not looking like he was going to make it, you realize just how quickly it can happen. Cheers to all the finger hooks, back slaps and never-ending seconds of fear. He still has his moments, but all to say, he can even do chips and gummy bears --- With EXTREME caution and a watching eye. It’s an incredible gift to watch Will enjoy pizza at birthday parties with his peers and chug down a Capri Sun. One day all that might be out of a G-tube, but I will treasure cutting up his food into tiny morsels every night for dinner and snacks/lunch the following day because I know how hard he worked to get there.
And then there is Mr. George – Will’s physical therapist. During the past two years, Mr. George has been one of the biggest constants in our lives. Every week we met to work with Will and his physical strength. I could go on for days about Mr. George. Will literally asks for Mr. George three or four days out of the week. I always am a tad miffed because if I had someone make me work as hard at George does I wouldn’t be that excited to see them, but 9 times out of 10, Will is waiting with a gleeful expression for George to arrive. The early days of Will walking surprised the heck out of everyone, a mostly of all I think George was surprised. One thing is for sure; Will is a very determined little man. I can’t figure out where he got that from???
I was telling our therapist the other day that this ECI graduation really marks the end of more than just a provider or vendor relationship. George, Risa and Melissa were on this journey to diagnosis with us. They cried with us when I told them about Will’s diagnosis.
For a long time, I felt very alone on this journey to diagnosis. It was a source of frustration between me and Neil – for a variety of reasons. Something told me to fight for diagnosis even if it meant looking like a crazy obsessed mother. (BTW – there actually is a disease it’s called Munchausen by proxy syndrome).
Anyways, I digress. These three people were a surprising source of support, freedom and honest feedback. They could objectively see Will was struggling and were not afraid to say so and work towards improvement.
So, I guess that was all a really long winded way of saying thank you. These three people have helped give us a gift that so many others take for granted and that so many others won’t get to experience. Hearing Will say, I love you forever and always. Walking to get his water cup. Chewing up real food. My gratitude goes beyond words.
Dad zipping up his gown

I'm ready people!

Proud dad! (and mom behind the camera)

Will was NOT into getting his picture taken.

So, George, me and Barney took a picture as Will ignored us in the back.

George brought a special therapy tool!

Will thought that was pretty cool!

The broom that Will used to help clean all the balls up

A special thank you to my mom. She helped me SO much with therapy, especially the chew therapy as they would often happen during the middle of the day. She was and continues to be an incredible support system for us in this journey. Thank you mom. Will is where he is today because of your help.

Good bye hug to Mr. George.

BTW: I think Mr. George is why Will has an obession with Barney. That furry dinosour was a constant friend in therapy.

My little bunny

Well, I’m behind on blogging but there is a very good reason why – my little bear turns 3 tomorrow! More on that later…
Will was able to do THREE egg hunts this year, one at school, one at my office and one at my parents house with the fam. I should mention that I was so distracted with Will’s ear tubes surgery happening on Holy Thursday that I neglected to realize that his school was closed on Good Friday. It worked out well, as we do an annual Easter egg hunt at my office so Will came along. 
So, Will came to work with me and thought he was big time. Ate lunch at the lunch table with everyone and made a few phone calls. He asked me on Saturday if he could go to mommy’s office.
I will let the photos do all the talking.

Thanks Aunt Julie AKA Easter Bunny for helping me out this year with special eggs for Will and fun surprises!

Monday, April 16, 2012

Home Brewed Meds?

I just read this article on ALS patients brewing their own medicine in their homes. While I would never brew up a batch of meds for Will, I certainly understand how and why these people are taking a risk. They know they are going to die, likely soon, why not try it?

Friday, April 13, 2012

Unbelievable - AFO problems again

It's happening again... getting new AFOs aka "boots" for Will is proving to be, yet again, an extremely frustrating nightmare. See link above to previous post.

April 2 - Dr. appt to get prescription for new AFOs
April 13 - Prescription has STILL not arrived at the new orthodics place (Will never go back to TMC Orthopedic) I've called at least two times a week.
May 3 - Couldn't get an appointment just to get measured at new place, Dynamic Orthotics for these dang things until May 3.

By the time I get these new boots for Will his little toes (ok, they are huge finger toes just like mine and Neil's) will be over the edge.

I should have probably started this process earlier, but for various and lengthy reasons I simply didn't make the calls I should have. Bad mommy advocate! My only hope is that the new orthotic place won't screw up the delivery like the old one did.

Love pulling up old pictures these days!

Age 23 Months - Look at those cheeks!

Age 28 Months - Funny Cousins with shorts on their heads

Mighty Mito Mom's

I met up a bunch of new Mito Mom’s (and dad!) last night for a night out. (If you’re a Mito mom reading this in the Houston/Katy area, private message me on email and I will send you the info).
We spent two or so hours swapping stories, meds and advice with new and old friends. I met the couple whose son was just diagnosed with Leigh’s in January. My heart ached for them and for me. The pain is still so fresh from July 5.
If you are a mito mom and reading this, please I ask you not to be offended, with this post and know that it’s coming from a place of good and that this blog is where I have to be true to myself.
I realized that Will is one of the healthier mito kids and I felt stupid or “not sick enough” to be sitting at this table with these amazing women (and man). I left realizing that I – WE – are taking things for granted with Will.
I sit here and write and tell people never to take things for granted and here I am, doing it. I take it for granted now that Will can walk (albeit not sturdy all the time), or get into cabinets, or vocalize his needs and wants.
I guess I just am thankful that this group of women (and man) really grounded me last night. I remember the time I would marvel that Will could sit up without falling or even take three steps. Now, I take it for granted to some extent.
The catch is that I know there’s going to be a day when things are NOT so grand and I will remember the days of Will walking and talking and “wire” free with tremendous sadness and a heavy heart.
So thank you Mito moms (and dad) for the gift you gave me last night. I am humbled to be in this group of amazingly strong and unbelievable women (and men).
I also just bought this book Living Well with Mitochondrial Disease by Cristy Balcells, R.N., M.S.N. off Amazon after it was recommended by two new friends. Perhaps I'll do a book review when I'm done with it haha.
I'm feeling nostalgic - Will's First Birthday - April 24, 2010.
My how time flies... almost time for birthday #3.