Friday, December 19, 2014

Life in Photos

Ah! I'm all caught up on the blog... Okay, I totally skipped Thanksgiving but I thought a fun round up of photos during the past few months would be way more fun.

Too cool for school

Academy, Will's favorite place to visit.

Train ride around the zoo with Carson during Thanksgiving break.

Me and Neil throwing the deuce while on vacation... We sent Will the picture. That was basically the only photo we took the entire trip! 

Quinn enjoying a PSL from aunt Lisa

Will giving us some fun art work he made with my mom and sister. I LOVE IT!

Decorating the tree. We decided to do this while Quinn slept...

Will's spot on the tree

New Longhorn hat

Oh look at me... I'm eating real food now and making a huge mess.

New shoes since I'm walking places now. She usually does about 4 - 6 steps and then plops on the ground or lunges for furniture. 

Donuts with dad at school

Sippy cups and spinach 

Bow browsing at Target. No we didn't buy one and yes those are her PJs. 

Little Miss Grabby Hands

Wow, big belly and big wet diaper! 

Our most exciting visitor! Our friends from Colorado whose daughter shares the exact same mutation point as Will does came in town. We were able to visit for a while and enjoyed seeing what a beautiful and sweet little lady shares this strange disease with Will. 

Only a few short weeks away from turning 1 year old! 
This is her having a little tantrum... 

This might be how I want to occasionally act during the next two weeks while school is out.  

Wednesday, December 17, 2014

Hay Ride 2014

I really love our neighborhood, everyone is just the exact amount of weird, normal, genuine and kind all wrapped up in old houses and good energy. During December a certain portion of the neighborhood hosts a "Lights in the Heights" party where pretty much every house does an amazing job decorating. They do a huge party night, parade etc.

There's a long-time Heights activist and resident who does hayrides around the neighborhood as well. We've somehow managed to get on his "nice list" and every year we do a hayride with a few friends and our family.

Even though we could have all been wearing shorts, it really does get you in the holiday spirit! It was Quinn's first hayride and I was REALLY nervous I would be walking home with her and the diaper bag. You could tell the first few blocks really rattled her, but then she found a comfy spot on my shoulder and as the night went on she starting saying hi and bye to everyone.

Gotta chunk a deuce of course. This year we let Will ride not next to me or Neil. I was nervous the entire time but he did great. You could tell he really liked having the independence from us. 

The ladies... getting their Christmas bingo cards and clipboards ready with stickers. 

That's Santa wind sailing... 

What is this?? A Christmas miracle, we are ALL four looking at a camera and smiling. 

Monday, December 15, 2014


Will participated in his first Kindergarten / Parish School holiday performance and if you ask me he totally rocked it, of course, I'm rather partial.

I absolutely LOVED the way they did the performance - it wasn't holiday or Christmas music but it was all songs about being thankful, gratitude and appreciating everything that's special. I had to really work hard not to break down and sob the entire time.

Will and two other friends were asked to welcome the audience; it was an extremely proud moment for me. Being able to celebrate all these little normal things - I am just overwhelmed sometimes with how normal it feels.

Will and his friend "C" apparently were two of the kiddos who enjoy performing, singing and attempting to memorize the songs the most - that or they just like to be really loud. One might say they feel quite at home on the stage. Will, however, often seemed to remember his words just slightly before or slightly after the words were said. He also used his loud singing voice so the end result was this hilarious loud yelling of words usually before or after they were meant to be said. It was exactly him.

I know I've said this before but every day we get to experience something like this with Will feels like a huge gift. When we received his diagnosis in July 2011, it was just incredibly hard for me to envision him every being able to do something like this.

My inner dialogue in my head usually goes something like this...
WOW, my kid is awesome. I'm so proud of him. He's doing such an amazing job.

Uh, can someone please explain to me if this diagnosis is really true? I mean look at him he is doing awesome, he is able to speak clear enough now to actually speak into a microphone and welcome an audience full of people.

Uh, okay, Lori, it's true. You saw it in black and white. You don't need to go home and pull out the blood work or MRI results where it says his brain tissue is dead and dying.

Death. How am I going to handle this? I can't and won't. Sometimes this takes a long tangent down a dark road.

Oh look at my boy up there singing his heart out. Live in the moment. Get a grip. He is so happy. We are so happy. We have an amazing life.

No wonder why I totally spaced out and only videotaped a few blurps of each song. I was trying to get my head together.

This is Will exiting the stage. I am only posting a picture from the welcome portion of the concert because I don't know if all the other families, especially those we don't even know, would appreciate their child's photo put on a blog. His little friends are all just so cute and fun to watch too.

Since I am not doing pics from the concert, here is one with my mom and Will afterwards. We, along with Neil took Will to an "adult" lunch outing after the concert. You could tell he felt VERY VIP.

Wednesday, December 10, 2014

OT Work Out

A few weeks ago, okay, maybe like more than a month ago... I went to observe Will doing Occupational Therapy with his new therapist at school. We'll call her Ms. T. Will LOVES her, which I'm so thankful for. She actually lives over by us and is really a fun person to get to know.

At Parish School there is a separate but together therapy center for the kids. You don't have to attend Parish School to get services there, but it's on the same campus which makes it super easy for the kiddos to leave class, do therapy and rejoin. The only "problem" is that it's all self pay and they do not file with your insurance. So, that's a lot of money out of pocket and paperwork to try and get insurance to cover it (insert hysterical laugh here).

We decided to keep Will doing "home health" speech and PT and move OT services to the new place. They have a huge variety of more physical options such as a ball pit and other equipment. So, it's more like gross motor OT versus fine motor OT which we were doing.

Will LOVES going to Ms. T's classroom and another little girl in his class goes about the same time on the same day as well, so they can enjoy the ball pit and some play time together too.

I haven't seen any major physical changes, but I think this is giving Will's body a different kind of work out and a lot of the play mimics the challenges he would have on playground equipment so it is helping improve some of the coordination required there and helping build his confidence.

I don't know if we'll ever see another HUGE leap on the physical front. That portion of his brain is simply gone, there's no fix for the ataxia or lack of coordination, but there are good days and bad days. Right now the good outnumber the bad and like they say, if you don't use it, you could lose it. So doing this type of workout is good for his body. BTW, he's 53 pounds and 4 feet tall now!

He climbed up on the stack of mats by himself and hung on for a second or two.

Blurry, but he went flying!

A child size elliptical! Who knew? It was interesting to watch him trying to coordinate his body to make it work. He got it going a couple of times, but you could tell it was difficult. 

Ball pit!

New boots....

I swear, only one pair of six boots Will has had has ever gone smoothly. I won't waste my time or yours rehashing the frustration and exasperation this process seems to require... 

We got these new SuperMan boots back in October and it took multiple trips to the boot place (a 45 minute drive both ways) to get it done correctly. I'm pleased to say he eased into wearing them well and he's now sporting new shoes and new boots. 

He totally picks the theme of the boots each time and I'm always curious to see what his selections are - UT Longhorns, Sports and now SuperMan. I'm just thankful he hasn't selected the pink daisy one. He's pretty adamant when he picks the theme and knows exactly what he wants. Pink daisy's are great, but these boots are already enough of a discussion point with random people, we don't need to add another layer of complication into the mix :-) 

BTW - did you know that the special socks he wears with the boots are $8 / pair? That doesn't include shipping and handling. We get our money's worth as we just restocked our sock drawer and tossed out a bunch of socks with holes. 

Tuesday, December 9, 2014

A Visit to the North Pole

The UT Mitochondrial Disease Center of Excellence is part of a special group of organizations who are invited to invite their chronically ill patient populations to visit the North Pole! Annually, United Airlines hosts a Fantasy Flight to the North Pole.

We've been invited previously, but this year I felt like Will would really enjoy it and appreciate it, boy did he! Each patient is allowed to bring two guests. Neil and I talked about it and thought it would be fun for Will to bring his cousin Carson.

United isn't kidding around here.... they go all out on everything. They had decorated every inch of the terminal and probably had 150+ volunteers that day.

We arrived on Saturday morning and were greeted immediately by volunteers directing us to the private security line. I was able to leave Will and Carson in the wagon and just pull everyone through. No one blinked an eye at the medicine, ice pack and food supplies I had in my purse. Usually we have to go through quite a bit to get through security with medicine.

We were greeted by Snow White and the Seven Dwarfs, Cinderella and Prince Charming, Queen Elsa, Frosty the Snowman, Rudolph, and many many elves. We were escorted by one of the Dwarfs to the "hang out" terminal which was fully decorated and had breakfast tacos, Dunkin Donuts, caricature drawing and face painting.

Right as we finished up the caricature drawings they announced it was time to go to the North Pole! We headed over to board our flight and were greeted by a 12 piece orchestra and dressed up carolers. They allowed all the kiddos in wheelchairs to go first. We were in that group I guess because of the wagon, they just ushered us on.

We presented our boarding passes, Houston to the North Pole!

United rolled out its impressive Boeing 787 "dreamliner" plane for the day. First class was like a living room. We then went to the cockpit to meet the pilot, then went to our seats. Thank goodness the airplane offered each person their own touchscreen panel with movies, games and maps. I think we watched 5 minutes of each kids movie available, all at no charge.

As we took off everyone started clapping and cheering and as we reached cruising altitude the pilot announced that he and Santa had worked on a special system that would allow us to travel 4,000 miles in under an hour, as the pilot turned on the super sonic speed the plane bounced up and down a little. Carson and Will were both slightly alarmed at this but then realized it would be okay.

The flight lasted about an hour and we had snack bags delivered and beverages. I know Will and Carson were enjoying themselves - airplane ride, headphones, movies, snacks and unlimited "throwing the deuce" sign. The flight attendants were ALL decked out like Santa's elves and everyone crouched down on the kids level, asked them their names and welcomed them aboard. I was really really impressed with every single person.

They played some Christmas music after snack time and all the flight attendants did a "congo" line around the plane. Everyone was clapping and cheering - very very festive. 

We arrived at the North Pole and were greeted by a cheering line, as you went through everyone was clapping and welcoming us. I was totally overwhelmed by all the STUFF, so I can't imagine how intense it was for the boys.
This is just part of the terminal we were in at the North Pole.

First stop, enjoying a slice of pizza, Gatorade and more donut holes. Then, meeting two Texan players and getting autographed footballs.

Then, Santa. He asked Santa for a Wii....

They gave each patient a really pretty Merry Christmas 2014 silver frame and printed out a professional photo of each person and gave it to you as you were leaving.

United had set up a bunch of different stations, jingle bell necklace making, cookie decorating. They had snowcones, popcorn, cotton candy, candy filled gift bags from Houston Police Department (Will was not a fan of the sniffing dog).

Every detail was executed perfectly and the whole day was simply amazing. Each child left with a gift bag from Santa including a Magic Box set and a really nice 200+ pencil / drawing / easel set. Each family was given a Luby's Holiday Dinner gift card valued at $100. United and its sponsors were incredibly generous. Chevron donated all the fuel for the Fantasy Flight. If you work for one of these companies, THANK YOU!

I got a little choked up just thinking about this day and knowing how special Will would feel. He is just growing up so quickly and I don't even want to think about that.

I told them they could do unlimited deuces if they would also take some nice pictures...