Thursday, September 18, 2014

Why I Hate Mito

This Week's Top Five Things I HATE About Mitochondrial Disease & Leigh syndrome: (I can't really rank them because they all equally suck)

Energy Zapper: Will's energy levels are at an all time low right now after starting kindergarten. He had a bad few days last week and his teacher said that he fell out of his chair twice in one day. Just sitting there and fell out. Just breaks my heart to think of him trying to hard to simply sit in a chair and his body couldn't even provide that.

This disease robs his body of the energy it needs to simply walk, talk and chew. One day it simply will not work at all.

Heat intolerance: It's damn hot in Houston, Texas. The cooling vest helps Will, but not nearly enough. Besides the fact that he has a lot of physical limitations, the heat also prevents him from experiencing simple things such as playing outside or going on a walk in the stroller.

Getting hurt: This morning we had a great morning. Will woke up happy and ready for school. He asked for (and received) a Mohawk style hair do like his friend "C" has at school and was just finishing up hugging dad goodbye. He got up off the couch in a hurry because he wanted to see Quinn and just tripped right over Neil's shoe. He landed flat on his face. He wasn't able to coordinate his body quickly enough to get his hands ready to catch himself.

Usually Will pops right up and says, "I'm okay" and moves on. This was not the case this morning. We went from one of the best mornings to one of the worse in a split second. Bloody lip, gums and one upset little guy. What happens when it's not a busted lip, but rather a busted knee that puts him in a wheelchair and he never is able to bounce back to his current baseline? That thought process is extremely real and extremely scary.
This was the worst busted lip we've had. Happened when he was about 1.5 year's old. Not pretty. 

Physical stuff: It's a hard pill to swallow knowing that there are portions of his brain tissue that are dead. Serious brain damage. That dead tissue is what controls his gross motor skills - running, jumping, skipping, riding a bike, climbing a play structure, going down a slide. That tissue isn't coming back and it's highly unlikely that we'll be able to train his body through PT to jump or ride a bike.

I still remember when we started physical therapy. Will made HUGE strides. He eventually even started walking. I was so naive and hopeful about certain things then; I know better now, but I still hope.
Working with Mr. George in the ball pit.

All the sh*t he has to endure: Not one day, rarely not one hour, goes by that I don't think about Will's health and future. It doesn't consume me anymore, but it's a very slippery slope. I know that eventually (probably sooner than I'd like) we're going to have to have some hard conversations with Will.

Muscle biopsy 

Sleep study 

Cruising in the hospital 

Weekly immune system infusions that take 2 hours. Thankfully we can do these in our home.

Our life sounds pretty miserable. Some moments it's exactly that miserable. But we have so many many millions of moments that are simply perfect. I try to cling to those memories and pray for many more.

This week is mitochondrial disease awareness week. If you're so inclined, please take a minute this week to tell someone about mitochondrial disease and like People Against Leigh's Syndrome on Facebook.


Where There's a Will, There Will Be a Way. 

Wednesday, September 10, 2014

6, 7, 8 Months old

Six months old I was ready for. I loved that stage with Will. They would sit in one spot, play, roll over and get excited to see you. The seventh month was a bit of a blur and now all of a sudden Quinn is eight months old and CRAWLING! She also is trying to pull up into a standing position on anything she can find and has actually "cruised" a step or two. And, she's saying dada!!! I am not ready for eight months old!!

It happened during Labor Day weekend. She just woke up one morning and starting going to a sitting position from her belly or back. Then the next morning she woke up and starting this funny crawl with one knee down and one foot on the ground kind of push/crawl thing. Then she woke up and had both knees on the ground.

Thankfully, her speed is slowly increasing. She's already too fast for me and it's only going to get quicker.

Neil and I talked about how amazed we are with Quinn's physical progress. It's beginning to get harder and harder for me to realize just how different Will and Quinn are from a physical standpoint. I think one of the biggest differences is that she already has controlled and sturdy body movements. It's mesmerizing, rewarding and heartbreaking for me to watch her move her body. She already seems to have more control than Will does. I don't necessarily dwell on this, but it's definitely something I think about.

One of the happiest moments of my day is when Will and Quinn are loving to each other. There's always a few minutes that Will is enamored with his sister and loves on her. She just coos and plays right back with him. Will wants to teach Quinn to throw a ball so they can play catch. He lacks patience with this and usually snatches the ball from her. He does this with just about every toy she plays with, Quinn hasn't figured out that she could/should yell for it back. Hopefully this is not a skill she wakes up with tomorrow.

Will thinks it's hilarious when we prop Quinn up on his shoulder and he "holds" her. 

Sharing aka Will taking the toy away and Quinn finding a new one. 
Look at my little girl sitting up so nice and tall!

It's been a LONG time since this happened. It was a nice moment to snuggle with her. She always seems to be on the move or moving...

Holding her own bottle for everyone except me.

Eating solids. We tried one of those baby puffs last night, and it went okay, but I think we're going to wait a bit. I can't handle the fake gagging right now.

In crawling position about to get brother.

Hanging in the car waiting for her school to open after we dropped Will off at school. I have about a 25 minute lull time between when Will has to be at school and when her classroom opens. It seems easier to hang in the car than go home, unload, reload and go.

Will's finished masterpiece race car.Someone looks mighty sleepy after school. 

Tuesday, September 9, 2014

Bouncing off the walls

Today I am thankful for the kind hearts and outpouring of support the Leigh syndrome community is receiving this month, mitochondrial disease awareness month, from Bounce Energy!

During the month of September, Bounce Energy is supporting People Against Leigh's Syndrome by making a $2,500 contribution AND for each new Facebook like received during November an additional .50 cents will be included.

So, go Bounce right off this blog post and over to this link, and give them a quick like. Then, ask your friends on Facebook to do the same.

It gets even better! When you sign up for electricity service from Bounce Energy and use the promo code “PALS”, Bounce will donate another $50. The campaign runs September 1 – 30, 2014 so don’t waste time; get on Facebook at like Bounce Energy! While you’re at it, go ahead and like PALS too!

Thank you to Bounce Energy for all the support, time and ENERGY to make this campaign happen.

Thursday, September 4, 2014

Put me in a box

Overall, Will has had a great first two weeks at his new school. The teachers, staff, kids and parents all are amazing. I was able to observe Will in the classroom setting to ensure he was able to physically maneuver everything okay (he was) and see if there were any additional adjustments we could make to ensure Will's safety and happiness. Obviously I was able to see what the other kiddos were doing too. It got me thinking a lot.... What box do those kids get labeled and put in and what box is Will in?

As I drive home after drop off and sit in the pick up line (anxiously waiting for my little Wiggles to come out in the "Zebra Express" wagon I look at some of the kids and wonder what is their special "thing" or what similar life experiences have we had with that mom? I'm trying to fit in. I'm trying to avoid those awkward moments when people don't know what to say or do when they find out about Will's diagnosis. I'm trying to see if we fit in. I keep trying to figure out what "box" he / we fit in. 

It probably sounds weird or discouraging to say this but- It almost would be easier to find our box if Will was in a wheelchair... Almost....  I don't want him in one, nor does he need one, but it's an easier visual explanation of what's going on in his body. 

Recently, two times in one grocery shopping trip I was asked about his leg braces. One person totally receives a "pass" on this one. He probably had never seen something like that before - though I would think working as a grocery store sacker you would see a lot of really weird stuff. The other person does not receive a pass. 

Grocery shopping with Will involves putting him in the cart and piling all the food around him and him attempting to open, crush, or make a tower usually out of glass baby food jars - sounds really productive huh? My bribe for good behavior is that he's allowed to get out of the cart after check out and can push the cart with me to the car. This is a long, slow, hot process and I usually circle the lot A LOT to find a close spot for this purpose. I also do not return the cart if it's too far from the car because Will is sitting in it with the AC running trying to cool him down after his five minute walk. I suppose I could use the handicap parking sticker we have, but where's the fun in that? 

Anyways, this woman literally followed me from check out to my car. Will and I stopped in the cart area in the front of the store to let some people pass us so we could go at our own pace. She stopped as well and started asking me questions about his braces. 

Perhaps one would say that she too had some issues and I shouldn't be so judgmental. Okay, fine. But in the moment I really wanted to take one of Will's leg braces and shove it up her you know what. I still feel rage now weeks later about this. 

It's one thing if you're our friend or we are in a normal social environment and we're meeting each other and you ask me a question say for example at a birthday party. I welcome that. We both need that. It helps us to share our lives with our friends and family and it helps you know what's going on. But strange woman in the grocery store? GO AWAY. Would she follow someone in a wheelchair out and ask them what's wrong with them too? 

I can handle the stares and odd looks or the extra long glances at Will in public. I just assume they are so taken with how beautiful my child is or how sweet he is acting. I just can't handle it when someone asks me this in front of Will. It breaks my heart actually. Then I get mad because what they don't realize is that they have just made my sweet boy uncomfortable. You are the adult, act like one. This really doesn't fly with me. 

Oh well. She was probably just trying to be nice. I tried being nice back because I wanted to set a good example for Will and I didn't want to further cement the idea that there's something wrong with leg braces. So we smile, we slowly walk. I cuss her out in my head. She offers to take my cart to the cart return. I remove the image in my head of me slowly rolling over her legs with my cart. I go home thinking about what box we fit in. 

I guess the answer I've come to is that it's okay not to fit in a box. As long as we surround ourselves with people who are willing to help us build a new box around Will's needs we're good to go. 

I offered to send out an email to Will's new class parents explaining what Leigh syndrome is and how it affects Will. After doing so, we have received nothing but kindness. This is a new corner of our box I'm thankful to be in right now. 

Will in his new classroom updating the calendar. His amazing teachers just came up with the idea to have Will use a chair while on circle. This means he doesn't have to use as much energy and effort to get up and down and participate. I saw this and knew he was in good hands. 

Using some of the outdoor creative play. Cooling is on! 

The Zebra Express - this is Will's primary mode of transportation around campus. The campus is similar to a camp and very open. The classrooms are set apart like cabins, there is a lot of time spent outdoors. 

He also has a special "driver" with the Zebra Express to class, I'll call him D to protect his privacy. D is one of the older, big kids who was asked to meet  Will at carpool every morning and takes Will to class in the wagon. D and Will seem to like each other. That or D is just relieved to see Will so he can go inside

Little does D know, he's saving me and Will from a massive meltdown every morning. Will does not want to be late for D at all. He starts looking for him the minute we pull up into carpool. D is a very sweet boy and actually reminds me of an older version of my nephew.