Little Fishy's & A Mito BBQ

We have been playing our hearts out this summer, the kids have really loved and taken advantage of the pool where we live. They have swimming lessons or water play every day at their school, and I have seen a huge change in them from the beginning of the summer. Around here we can start swimming in April, and we're usually out there since we love it so much. This year it took a lot of convincing to get the kids off of the steps of the pool. As soon as they started swimming and water play at school, they immediately couldn't wait to jump in. I've said it before, but we are constantly blown away by what they are learning and doing at school.

Landon Swimming in the pool, he has become so brave and begs to go swimming every day

Gatorade break for my Mito kid, and sister can't be left out.

E's new favorite thing is to jump into the pool and for you to catch her, and swim her back to the steps in the shallow end.

We also attended a Mito BBQ put on by our fabulous Mito friends and family. It was in Phoenix, and it benefited Tgen's Center for Rare Childhood Disorders, and more specifically The Mylee Grace Research fund for Childhood Disorders. Both can be found Here (Mylee Grace) and Here (Tgen), please take a minute to review them for they are pivotal in helping us find a cure and raise awareness for Mitochondrial Disease.

The Mito BBQ was a lot of fun. We played ping pong, horse shoes, looked through the vendors that were there, and listen to several amazing bands including The Sugar Thieves. We were able to meet a lot of the doctors and researchers with Tgen, as well as our fellow Mito families whom we love so much and have helped us through a lot of rough times. It really is a blessing to have these Amazing women and families in our lives, they truly know and understand what we have been through and the road we still have to travel to help not only our kids but others like them. We loose way to many kids to this horrible disease every year, and it's just heart breaking that most kids will not live past their 20's. But enough of my Mito soap box.

Mito Picnic Picture. Thanks to Mylee's amazing mom for catching this moment. 

We have also spent a lot of summer nights at the Desert Museum here, we have a membership and when they have their evening events in the summer we take full advantage. The kids love the section where the docents help them use their black lights to find scorpions in the rock crevices on one of the walls. Not to worry, they make sure (as do we) that they do not get close to them. Our other favorite parts are the fish in the aquarium, the owls, and the kids absolutely love to play with the tarantula at the docent station. I personally do not understand this as I hate spiders, but they think it's fabulous and hilarious. My favorite memory so far of the Sonoran Nights at the Desert Museum was when I was talking to Landon and Emeline about how the animals we were seeing were Nocturnal since they were out at night time. Landon turns to me and tells me 'yes mommy, because animals that come out during the day are Diurnal.' This completely floored me, and I asked him how he knew this and where he learned this. He immediately told me, 'My teachers at school taught me this, mommy' and of course E chimes in with 'yeah.'

Our favorite owl friend at the Desert Museum, we always have to find him. He's not a huge fan of the kids flash lights though.

Geneticists Appointment.

Friday, Landon and I traveled the 2+ hours for his biannual geneticists appointment. I always try to make this a fun experience, his geneticist is in a children's hospital and it's huge and has a lot of stimulating things for the kids. Landon loves to run around and play with all of the lights, and interactive things they have on the floors and walls.

The clinic was running a bit behind so we had to wait, we had planned to visit a favorite of ours for lunch but due to the delay we ate in the cafeteria. Landon loved it, he was able to pick something diet appropriate from the vast array of food they had. We then wandered to the gift shop as always, for no reason Landon just likes to look at all the neat things. He proceeded to go through the shop and tell me everything he wanted for his birthday...read: most of the boy items in the store, and a few for his sister.

Fast forward to his appointment. Landon is 42.5 inches and 39.7 lbs. We met with one of his Metabolic dietitians, and she was very pleased with his progress. His diet will remain at 21grams a fat per day, 6 mL of Levocarnitine twice a day, and 3 scoops of MCT Pro-Cal daily. His geneticist was really impressed with his energy level, and especially how smart Landon is. He asked him questions about his colors, and then Landon told him which combinations of colors made different colors. Needless to say the doctor was floored at his level of intelligence.

Landon had his blood draw, and he did very very well. He was scared and snuggled into me, but was very brave and I was quite proud of him. We ventured back to Tucson, and Landon fell asleep before we could hit the main highway. We had fun, which is always the goal and he looks great which is always a weight off of my shoulders. He will continue to see them on an every 6 month basis, and the cardiologist annually.

Looking forward to summer

We've been keeping ourselves busy around here, the kids and I are loving playing outside since the weather has been so nice. This week we've been lucky enough to have a lot of days in the 80's. If you know AZ at all, it's usually over 100 degrees by now and I am so thankful that it's not. The kids are chomping at the bit to get into the pool, but for some reason the pool isn't being heated as it should be. We've gone several times and the kids would splash on the steps, but it was waaaaay to cold to get all the way in. I'm hoping to take them to the splash park soon, but again the water needs to warm up some before that can happen.

We are looking forward to a laid back weekend, and a fun Mothers Day. Hope all the mom's have a fabulous weekend, because as we all know it's much deserved!

Landon has been very inquisitive and into learning anything and everything he can. I love this picture of him that I captured a few days ago, even if it's a grainy poor quality cell picture.

Miss E is all play lately, this is her doing a head stand off the couch. She is constantly climbing on anything and everything, of course with me right next to her...honestly it scares me even though I know it's normal toddler behavior. We are also in the midst of potty training, which she is doing really well with. 

I was lucky enough to get this picture at the pool, I asked them to smile for a picture. Landon crossed his arms, and E looks over and mimics him. It's one of my favorite pictures of them ever. It really shows their personalities, and how much fun they are. 

Warmer Weather!

We live in Arizona, and I know it's still cooler in other parts of the country but it;s been in the 90's and even the upper 90's around here lately. According to the weather people, 'we're lucky' since it hasn't hit 100 degree yet in our town (I refuse to call it a city, because well it's tiny compared to home. It really is a major city though if you would look at any sort of map). We are definitely looking forward to a lot of pool time coming up, as well as a really fun BBQ with some great Mito friends in a few weeks. The shorties love to hit the nearby splash park, and I love it because well they have a great time and it wears them flat out!

Our summer plans are pretty normal in the grand scheme of things. Work, school, and playing on the weekends. We may try to take a few in state mini vacations to some of our favorite spots, but we haven't quite decided on that yet since the shorties can't make up their minds! Landon has a geneticist appointment in June so it would be fun to turn that into a fun time, since we have to travel 2 hours for the appointment anyways.

E has been coming home from school singing so many new songs, and she just loves to belt them out for anyone that will listen. I'll have to catch her on video soon. Her current favorites are 'Bah Bah Black Sheep" and "Bringing home a baby bumble bee." She's also talking up a storm, and her vocabulary is outrageous. And let me tell you, this little girl has quite her own opinion on everything from clothes, shoes (no idea where she gets that), food, and on and on. My favorite thing she's into right now, is that she asks for 'one hundred kisses mommy' when she goes to bed. It's fun to shower her in kisses as she giggles right before bed.

Landon is really into art right now. Every day he comes home from school, he hands me a stack of art work he made that day. He loves to help me pick what art pieces of his and E's are going to be displayed on the fridge this week. I'm currently looking into making a 'look what I did' board for each of them and putting it on the wall to display their art work. LP really loves to play 'hi ho cheery-o,' he would play it constantly if I let him. We play at least a few times a day, and I think it's really helped with following directions, sequencing, and logistics.

Anyways, just a bit of an update about our happenings and such. I'll finish with a few new pictures of the shorties.

Landon 'doing my art' as he calls it. He was being very patient and was very into his coloring!

E's new favorite thing to do when you take her picture, is to stick her tongue out in some manner. Every single picture I have of the last few weeks, she's sticking her tongue out at me. She's such a goober. 

Easter Egg Hunt

I took the kids to a community Easter Egg Hunt this morning, they really loved the whole experience. E at first wasn't sure exactly what was going on, but when a kid starting picking up the eggs around her she jumped in the way and claimed 'mine' and started hoarding them as quickly as she could. Luckily each kid was limited to 10 eggs, that way everyone was sure to get a few.

E dove right into her basket, we had to give the Eggs back so it was fun to open them and see what was inside. E tried several times to help everyone else open their as well. That, as you can imagine, did not go over to well. Although, she did not try to whop anyone with her Easter Basket, so I would call it all a success. 

She was very possessive of her Easter Basket, anyone that looked at it was told 'no, mine.' So, a big thank you to Grandma for the very well liked Easter baskets for the shorties. 

Landon was so quick when they told him to go (he was in a different age group than E for his Egg Hunt), that I wasn't able to get a picture of him hunting eggs. He was able to get a lot of neat ones that had dinosaurs and everything else in them. 

After the Egg Hunt, we stuck around for a craft fair they had going on as well. The kids enjoyed looking at all of the neat things the vendors had out. The Easter Bunny was also there, so the kids had their picture taken with him. I was shocked they actually were not scared of him at all, Santa at Christmas was a completely different story.

We had a fabulous morning, so thanks to everyone who put on the event, the kids and I enjoyed ourselves immensely. I was especially thankful that we were able to go, since earlier in the week Landon was in the ER for several hours for observation and fluids and some Zofran for a few vomiting episodes. That always sends a chill up our backs around here, and reminds us how lucky we are, and how much he means to us. 

Rare Disease Day

Tomorrow is Rare Disease Day, Please take a few moments to help us teach others about Mitochondrial Disease. Without Awareness there can be no forward movement towards a cure. Landon and his friends deserve to have their disease's known, researched, and to have the best care that is available to them. At this time, that is not possible due to so many unknowns that come with Mito. 

Arizona Mito Walk 2012

I've procrastinated a bit on writing this post, but alas I am sitting myself down to write it.

We participated in the "Arizona Mito Walk 2012" in December, and I must say we had a wonderful time. It was chilly and poured rain, but that was not going to stop us (though keeping the kids out of the mud....mostly, was a challenge). The most amazing group of women put the walk on in Peoria, AZ. These women have become some of my closest friends and have definitely helped me through and endless supply of love, patience, understanding, and support. Of course they are all moms of Mito kids (and the dads helped too)! They had a slide show of all our Mito kids up on the scoreboard big screen, put together and timed to music and what not. I do believe it really drove the point home about how Mito affects these kids, as well as their families.

E was helping 'carry' ice to pour over the drinks that were so nicely donated to the walk. 

We did a lap around the Spring Training facility at the Peoria Sports Complex. The kids had a blast playing with their friends and participating in all the activities that were set up. There was a silent auction to raise money, and we were able to get E a super cute bow that says 'Hope for my brother' with a Mito Green and White ribbon. It's a little big for her right now, but I'm confident she'll be able to wear it soon.

Our Team 'Landon's Mito Warriors.' We had a lot of friends and family walking in spirit even though they weren't able to make the trip. 

We decided to make a 'weekend' trip out of the walk since it was 2 hours from home. After the walk, we retired to the hotel to dry off, warm up, and then we went out to dinner with some amazing friends of ours. They have a daughter that the kids love to play with and they wore each other out.

The following morning, we made a quick stop at Rudy's in Chandler for Brisket Breakfast Tacos and then headed home. Thanks to all who put on the walk, we look forward to participating again next year! 

Landon's favorite part was getting to play with my umbrella. 

E loved having G there with us, the photographer chased these two around trying to get a picture of them. 

Me and my Mito Warrior. His shirt says, 'Landon, Mito Warrior.' He looks like the stay-puffed marshmallow man b/c he's in layers of warm clothes, a water proof coat, and his walk shirt over it.