Friday, April 26, 2013

Four Year's Old!

Will hit the big 4 years old on Wednesday! It's hard to believe he is getting so old, big and independent. He cracks me up every day and I treasure each moment I have with him. Even when he is picking his nose and lip. (GROSS!)

Right now some of Will's favorite things are COWBOYS!, Barney (still...), any sort of sporting thing, the Longhorns, construction / yard stuff like gardening or mowing and anything that involves using scissors. He still is my big helper around the house, always trying to help with the dishes or chores. He has perfected folding a washcloth.

Where has the time gone? I just want to put all of us in a bubble and time warp to this place and stay here.

We celebrated his birthday with a cowboy themed party. Note, according to Will if you even put on a belt even with gym shorts you are officially a cowboy. I don't fight that notion except on PT or gymnastic days.

One of his awesome teachers at school, Ms. Maria, and her mom turned Will's cooling vest into a cowboy vest. Will typically has a major fit when he has to wear it, so hopefully now he will enjoy it more. I have my serious doubts though, he just doesn't like it.4

Every cowboy needs a horse

And a petting zoo. He opted to just ride the horse, A LOT, and stay out of the petting zoo. Not a fan based on some of the shrieking I heard.

Cowboy cake and cupcakes, thanks again to my mom and sister's for helping me make and bake all these goodies.

Singing Happy Birthday!

Did I mention he loved the pony?
He dove right into his gifts after the party and promptly put on his new Astro's hat.

Fast forward to his birthDAY and he brought special snack at school. I'd say he enjoyed that chocolate cake.

Hugs for the birthday boy from his cousin

One of the special things they do at school for the 4 and 5 year old birthday's is the family gets to come in and Will shows pictures of himself from age 1, 2, 3, and 4 to all his friends. Then, the gets to carry the globe around the "sun" each time to signify a year. Then at the end everyone sings Happy Birthday. You could tell he thought he was THE most awesome kid that day. He got his birthday crown, special snack, all eyes on him for showing his photos.
Ms. Monica pointed to the globe and asked Will what it was called. He replied, "the orange continent" - she was pointing exactly to it. Now you know what I'm up against every day :-)

MORE birthday cake at home that night after dinner with both sets of grandparents.

He has been growing so much and so fast lately, that all he got for his birthday from us were clothes. Literally, his pants are all high waters. Thank goodness his boots keep him warm on these random chilly days we've been having in April.

The redeeming moment of the night was getting Aunt Lisa and Tom's card in the mail. It had a sword you could blow up and play with. Whew! Finally, a toy.
For a long time, I couldn't see Will past the age of 5. Now, I just feel so blessed to have what we have every day. I no longer put a time stamp on things, but just try to enjoy him, our life together and all the crazy stuff that fills up the day. I am so incredibly proud of everything he has accomplished. He works SO hard to do just half of what other kids can and he does it with a smile and joy in his heart. I love you Will, forever and ever and always.

Thursday, April 18, 2013

Lion Dance Gift

One of our friends who we met through Will's school has always been super supportive and just all around understanding. We have had quite a few play dates and always enjoy hanging out with Christi and her kiddos. She teaches a music class that I would encourage everyone to check out, Crescendo Family music.

To celebrate the big 4-0, Christi had the ultimate party including a Lion Dance and asked her family and friends to donate to the UT Mitochondrial Center of Excellence in honor of Will. Pretty amazing if you ask me.

Thank you Christi and all those who contributed! The party raised $205!!

"I decided to have an awesome lion dance from the Lavang Lion Dance Team to bring good luck to my 4th decade, and have realized in my old age that I don't need presents and am better off having my party goers donate $5 to support my little friend, Wiggles." said Christi.

Wednesday, April 17, 2013

The Other Shoe...

I have been holding my breath, delaying and ignoring writing this post for a few weeks now... We met with Dr. Koenig for our three month check in last week and I am pretty happy to report that she said, and I quote "This is the most stable I have ever seen him." She even had to do a double take to look at his leg muscle definition. And by definition, I mean his stick thin legs are thicker and slightly more muscular. Maybe it's just all the chocolate milk he loves to drink.

He is 42 pounds and 3 feet and 5 inches tall. His two biggest problem are his GI system, which we've gotten fairly under control. I haven't had to do a suppository in months. The other problem is his physical limitations. He's walking, but his ataxia sneaks up and catches us all off guard. He will always have significant ataxia, but I've noticed that sometimes he doesn't want to hold my hand anymore walking down the sidewalk to school during drop off. It makes me incredibly nervous to let go - physically and emotionally.

It's been a year since we've been admitted to the hospital. We've had ER trips, but no admissions which is huge. It's huge because if we can avoid fevers, illness and inflammation then theoretically we can help stop some of the disease progression. Mince no words, it will progress regardless, but this is likely all attributed to starting the immunoglobulin infusions for amping up his immune system in October 2012.

I'm just waiting for the other shoe to fall off. I'm paranoid if I don't have my cell phone on me constantly that something will have happened (he's hurt, he's sick, some kid at school is sick...) I've actually caught myself recently not being as obsessed as to where my cell phone is when he isn't with me or Neil because he's doing so good. When I realize that I let my guard down I kind of get freaked out; like whew! I got a pass on that one. Better not do that again.

I think what prompted me to finally write all this down is the Boston Marathon... none of those people were waiting for the other shoe to fall off. They didn't even know there was a shoe to fall off. They lived in their own worlds and then out of no where, extreme tragedy. My heart goes out to everyone who is suffering, in Boston, or wherever.

When, how, why will the other shoe fall off for us? I have no idea. I just pray that it's not as physically horrific and gruesome as what those experienced this week. I can't even begin to understand the emotions we will experience with Will. I avoid thinking about it and don't want to dwell on it. Some day's I get lost in thinking about when, how or why. Just totally lost in that pain. While I'm putting him to sleep and listen to his breathing I think about how sweet that sound is and then what would it sound like if he was struggling. Then back to the sweet hum of his breathing and occasional sleep talking. Then back to the struggle and back to the sweet breathing.

We're in an incredibly good place right now. My heart goes out to those that are struggling or regressing with this ridiculous disease. I feel guilty or bad even saying we're doing good because there are many suffering in the hospital right now.

I'll stop rambling along now, but I guess I just needed to get this all out!

In other news, our big boy now is riding in style - booster seat style. The big heavy carseat is gone and Will happily climbs up in the booster seat. He gets a big smile when he can unlock the seatbelt himself and get down before I can help get him out.

Tuesday, April 16, 2013

Water shoes

Will appears to have a slight obsession with his water play shoes. At school on Wed. they are having the Spring Fling party with water play type activities and a bounce house etc. The water shoes and swim shorts were his infusion party surprise on Monday night.

He put on the water shoes asap and has been talking about them ever since. He told his teacher at the lunch table and when we got home this evening, he immediately asked where they were, took his shoes and boots off and put them on.

I was packing up his bag for tomorrow and asked him to pick a shirt to wear with his swim shorts. He said, "No, how about I just wear my belly." I couldn't stop laughing. What a nut!

Friday, April 12, 2013

Easter 2013

Hippity Hoppity, Will loves the Easter bunny....

It started with an Egg hunt at school, at a friends house and then at my parents house. Our little bunny was pooped by the end of the weekend.

He wanted to get in a little practice at the house... Grandma came for the infusion party earlier in the week and brought candy and money filled eggs to hunt and open as a surprise. So we had plenty of eggs and candy...

Egg hunting at a friends house.... I should note that he isn't dressed in a nice Easter outfit, he's actually a cowboy. Oh yes, that's right friends, you put on a belt in our house and you are officially a cowboy.

Ok, too funny not to post with his dumb and dumber hat hairdo.

Making popcorn with Mr. Mitch

The biggest egg of all!
Egg hunting at Papa and DeeDee's house

These two look like they are up to something...
Treasure hunt surprises!

Dinner outing with Peyton and Murphy! Will HAD to sit next to Murphy, I felt so tossed aside haha.

And finally, bed!

Wednesday, April 10, 2013

Spring Break 2013

The missing spring break post that I have been writing for about two weeks now...

I never realized how "big" spring break was until Will was at a more appropriate age for fun stuff. This year we decided to go visit Neil's parents in San Antonio and visit friends as well as some of San Antonio's biggest attractions (apparently along with the rest of Texas).

Before we left town, we went to the Houston Rodeo with my sisters and nephews. It was a lot of fun and a great way to start the break.

The hat really did not fit, but Will was adamant about wearing it.

We headed to San Antonio after the Rodeo to have a lot of fun new experiences with Will...
First stop was Morgan's Wonderland an adventure park for differently abled bodied kiddos. This place is amazing - clean, well organized, and just gives me a lot of faith in humanity. If you are looking for a place to go have fun - wheelchair or not - Morgan's Wonderland is a spectacular place.
Riding the train with his "San Antonio girlfriend, Anna"

Driving the speed boats

Grocery shopping in the sensory village

Merry go round
We ventured out apparently with the rest of Texas and San Antonio to Sea World. We arrived at least 10 minutes before the park even opened and the line of cars was about a half mile backed up. The weather was cool and this mom of the year didn't pack a jacket. Thankfully our friends Sheila and her cute kiddos brought Will one. I think all of our kiddos were done with all the photo taking and we couldn't get them to smile... at least all together. 

Abby and Will in the wagon with baby bro Austin riding in the "back cab" haha

The stinky aquarium

We also had time to hit up the Natural Bridge Cavern's Safari. Essentially you go through a four mile route in your car and the animals are literally, right there in front of you. We didn't know what to expect, but had a blast.

Neil feeding a zebra

This crazy ostrich wanted to get into the car, but moved on after we rolled the window up.

Petting zoo at the end of the safari
Did NOT want to touch this "mama llama"
We managed to make it to some of our favorite San Antonio eating spots, saw some wonderful friends and family. We were able to just have a lot of fun with Will. Granted, it was a lot of work and travel, but worth every second of it. I just love him so much and am so happy that we were able to spend five wonderful days with our buddy just having fun. Did I mention we had fun?