Tuesday, October 29, 2013

Our Trip Home, and Dirty Thirty


Finally getting to my promised post about our trip home to Texas this fall. We had a great time visiting with my family, all our friends, and cousins. The trip wasn't all fun and games, a very close family member was diagnosed with serious cancer a week or so before we arrived, so we spent a lot of time visiting with them and letting them know we loved them and are there for them always. They're a fighter, so thoughts and prayers with our family please.

While in Texas, I got the privilege of turning the big 3 - 0, insert grumble here. I have to admit 30 has been very good so far, all three weeks of it. So to ignore celebrate my thirtieth birthday, we all went to the fair. I was hoping it would be nice and cool, but lets face it we are talking about Texas. The weather can be hot in the morning and freezing cold by noon. It happened to be pretty warm and humid, go figure. I personally love the State Fair, and it has been a tradition for us to go every year and I love sharing that with my kids. Landon and Emeline love to go and see the animals, eat, and ride the rides. There was no shortage of food, and it was fabulous. There's such a large variety, we are able to keep Landon on his diet. He was able to have a few small bites of things, but never went over his daily allowance, sucks that Mito has to interfere with all aspects of his life.


Landon picked the Airplane ride, and Emeline picked the next one...

The tractor, yep she's my Texas girl!

We had some of the most amazing fried food. We always have our Fletcher's Corn Dogs, it's the first stop no matter what. We also had fried oreos, fried pumpkin pie, tea, fresh squeezed lemonade, ice cream cones, milk, pickles, and of course cake. I'm surprised we didn't have to be rolled out of there. Landon had some of a corn dog, a bite of my pumpkin pie, a lot of lemonade, frozen yogurt, and some other diet friendly foods. 

My favorite of this years fried food, was the fried pumpkin pie. Yes it did come with whipped cream too, so freaking good. I was hoping they would have the fried red velvet cake they had last year, but alas they did not. 

The kids, my mom, Garry, and I went through 'Little Hands on the Farm.' It was really cute and a lot of fun. They had set up a mock farm, where the kids got a wooden bucket and went through and fed cows, planted seeds, picked produce, etc. It taught them all about farm life and caring for animals, riding tractors, and how much hard work really goes into their food. It was really well done, and at the end they got paid a dollar to use in the little general store to pick a treat. I was glad that Landon chose trail mix, and Emeline of course chose Cheetos she's such a cheese fiend. 



We also went to the new Perot Museum. I had not heard about it, but my mom really wanted to take us and the kids. I have to say it was really nice. The museum is about five stories tall, and you have to start at the top. One floor was all about space and dinosaurs, which Landon really really liked. Then we went down to the Energy Floor, which included Oil and Gas. My mom worked for a big name Oil company for years and it was really neat to see the information on shale, natural gas, oil drilling, etc. The children found it really interesting as well, but mostly because there were lots of things that lit up and made noises. Due to my mom's tenure at the major Oil Company I knew a lot about it, and having gone to college in East Texas I learned a whole lot more then. The next floor was medical, which Landon knew all about. He was explaining a lot of it to my mom and Garry and it was cool to hear his perspective on the medical procedures and such that he goes through on a regular basis. The next floor was all about animals. This was Emeline's favorite part of the museum other than the children's play section. They had all sorts of things they could explore, pull on, pull out, etc to teach them about different animals and their relationships in the environments they live in.  Lastly we went to the bottom floor (we skipped a few things due to a time crunch) and saw the animal version of 'Body Works" it was neat, but not nearly as involved as the Human Exhibit from the same people, and the kids were bored with it. 


This is Emeline climbing in a log and poking through the various holes in it for the kids to see how animals live. Landon wouldn't let me take his picture, he was 'having too much fun and couldn't wait for a picture, mom.'


The best parts of our trip were the times we spent playing and visiting with family. The kids had not been home to see my family for a year, so they spent as much time as possible playing with my best friends kids, their cousins, and their grandparents. My mom pulled out all of my old dance recital costumes for Emeline, and she was in heaven. She's recently been really into playing dressing up, so I think for Christmas we're going to make her a dress up closet and maybe put a new princess outfit or such in it. 


Emeline is in my Panda Bear Dance Recital Costume from when I was three years old. She tried it on right before bed time, and pitched one heck of a fit when we made her take it off in exchange for pajamas. She ran immediately to my mom crying, 'Garry made me take my panda bear off, make him put it back on.'

Landon, not to be left out, is doing his 'ninja pose' in his new Teenage Mutant Ninja Turtle Pajamas. I have to say I love that they are making a come back. 





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Friday, October 25, 2013

GEMSS


Landon and I were recently presented with the opportunity to share his story about his life with VLCAD and Mito. A representative from GEMSS ( Genetics Educations Materials for School Success) contacted me through our FOD (Fatty Acid Oxidation Group) about Landon and his disease. They had visited the FOD page and saw his picture on the site as well as his diagnosis. We set up an interview as they wanted to use him on their site as a "Kids with VLCAD in the School" setting.

We were more than happy to tell them about our experience with Landon's Pre-School, because as you all know by now, we are all about raising awareness and helping bring information about VLCAD and Mito to the forefront. It was about a 45 minute long interview, and they were very nice. I told them all about our journey to diagnosis, Landon's hospitalizations, diet, medicines, life style, etc. GEMSS then took the information and then compiled it into a write up for their site.

Please take a minute to visit their site, and learn about not only Landon, but other children with Mito and Genetic Diseases. We feel very honored that they choose us and Landon's story to be show cased on their site.

Landon's Story for GEMSS
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Tuesday, October 15, 2013

Home


We traveled home (Texas) in late September and were there for two weeks. We had a blast, and the kids really enjoyed seeing all of my family, extended family, and our amazing friends. We really miss being at home, and it was great to see everyone since it had been a year since we had been back.

The kids had fun, we went to the TX State Fair (a whole new post will be done about that with pictures), had cousin time, cousin dinner, and if you ask the kids they'll tell you 'Mommy got old.' I had my birthday while we were there and it was fabulous. They spent a lot of time with their grandparents on my side, as well as all of my brothers and sister and nieces and nephews.

I'll keep this post short, as we are still un-packing and doing laundry. Oy Vey. We're all still adjusting to the time change and back to our normal routine of work and school. Below are some pictures we had taken of the kids while we were in Dallas. They are definitely looking so old to me now, Emeline no longer has that 'baby look.'




Emeline being silly, which is my favorite side of her. 



Landon insisted on wearing his Neet Feet for the photo shoot. He loved sitting in this window sill, and was a total ham for the camera. 




Pretty Girl. 




They play so well together, and are really quite close. I love capturing pictures of them in their 'natural' ways of interacting with each other. 




One of my all time favorite pictures of Landon and I. It really shows the depth of the bond that he and I have. We really have been through so much together with his Mito and other aspects of life. 

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