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. 

Innocent Heart Murmur

Landon had a Cardiologist Appointment this afternoon, because at his Geneticist check up in December they discovered that he had developed a small Systolic Heart Murmur. It raised a few flags, because he had not had one in the past but also because he has been classified as Non-Cardiac VLCADD. Geneticists decided that he needed to be seen annually by the Cardiologist for preventative measures. Landon had been in March of 2012 and nothing was detected then.

Landon did very well today, the only thing he was a bit unsure of was the scale to be weighed. He's been this way about scales recently, and the only thing I can think of is that he knows the scale is the 'gateway' per say to possible pokes and medical procedures. He's always weighed at the Pediatricians office where they give him shots and check his blood sugars when he sick. He's always weighed at the Geneticists office where they make me hold him down so they can draw blood (I hate that they make me do that, and always have), and he always gets weighed at the hospital when he's admitted where he gets poked for blood sugars several times a day, IV's, etc etc. After thinking about it, I can't blame the kid for not liking the scale.

They took his vitals, and then Dr. Blair (whom Landon just loves) came in and listened to his heart. We were in a room decked out with a Spider Man Theme, which happened to match Landon's shoes and he thought that was incredibly cool. Landon then had an EKG and and Echo Cardiogram. He sat perfectly still and watched Finding Nemo on the tv the whole time. The only thing he was concerned about was if we had passed the part in Finding Nemo with the sharks or not...as compared to last year where he was freaking out about all of the wires, the ultrasound gel, the ultrasound wand, and anything and everything that was going on. I think his favorite part was getting a lollipop after he was done with the EKG and Echo, he even remember to thank the Ultrasound tech (it is getting through!).

Dr. Blair came back and said that everything looked good. He had an innocent murmur, that was not there last year, but it was not effecting the strength of his heart or him. Most kids should outgrow the murmur by their 20's, but we do want to keep an eye on it with his disease. He is to come back in a year an be re-checked, and it will continue annually until he and the Geneticist decide otherwise. Very relieved for the clean bill on his heart.

Landon getting his EKG and Echo Cardiogram. He requested a picture to 'show his friends how brave I am mommy.'

4 years old!

Landon turned 4 years old yesterday, I swear time is flying quicker the older he gets. Due to how visitation schedules fell this year, I had Landon for a few hours on his birthday, and did we have a lot of fun! He was able to pick everything that he wanted to do in the time that we had. This is a tradition in my family, that the person whose birthday it is, gets to pick the activities for the day. To me, it makes it extra special because it's everything the birthday person wants to do, which normally in every day life just isn't plausible. Landon chose to have dinner a 'Guys Five' (Five Guys), then he wanted to go bowling, and end our time with 'Cold' (Frost, it's a Gelato shop and within his diet restrictions!).

Landon loves, loves, loves 'Guys Five.' He's always asking me to go there, and we do frequent the place on a regular basis. I love that they have Kosher Hot Dogs and make their fries from scratch after you order them. He basically inhaled that, and then we headed to bowl. At first, I got him one of those little ramps and when he went up to bowl he goes, 'mommy I do NOT need this, I can roll the ball down with just a little help.' He was very insistent so after appeasing me and using the ramp about twice, he pushed it out of the way saying it was for Emeline when she came with us.

I managed to get a picture in the 2 seconds the ramp lasted with him. It was pushed aside just after this in lieu of 'big boy' bowling. 

We bowled 2 games, and Landon beat me and G in the last game, and G beat Landon and I in the first game. Landon bowled his first strike! He was so excited, jumping up and down saying 'woohoo I got my first strike mommy' and hugging and high fiving me and G over and over again. He loved bowling, he would give you a big huh, high five you, and jump up and down all excited no matter how many pins he did or did not knock down. It was great having so much fun with him and I know he reveled in the one on one time.

Landon and G with his strike ball! He was so excited as you can see!

The 'Little Help' that he needed rolling the ball!

To end our evening we went to 'Cold,' which is actually Frost gelato shop. Landon is constantly asking to go here, so it was only fitting he chose it for his birthday 'dessert.' He always gets the bubble gum gelato with 2 blue bubble gum balls, what can I say he's definitely a creature of habit...and male! This gelato only has around 100 calories, as well as being virtually fat free so it works with his diet and is a big treat for him as well. It's nice to have found something he can have and he really enjoys that won't blow his diet or effect him in any way.


I think my favorite part of the night was when I told him, "Happy Birthday Bub, I Love You.' To which he responded, 'thanks mom, I had the best birthday ever. Love you.' Melted my heart, and I was so glad he enjoyed himself and his birthday.

Landon and I being goofy while waiting for our turns to bowl

Landon's Favorite Things at Age 4:
Cheese Sandwhiches
Cheese Quesadillas
Yogurt
Hot Dogs
Those cutie clementines
Fruit Snacks
'Cold' Bubble Gum Gelato
Avengers
Super Hero's, more specifically Batman, Iron Man, and Super Man
Texas Rangers Baseball
Monster Trucks
Texas, his bear
Bunny

Landon told me when he grows up, he wants to be a Super Hero (said in an excited little boy voice while jumping).

My sweet, brave, amazing, silly, incredibly smart 4 year old! I love you Landon, you've been such an amazing addition to our lives and brought so much love and strength with you. Happy Birthday sweet boy!