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. 

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

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. 

I Love Someone with Mito

I have this decal on the back of my car, you can buy them on Etsy for $10, and all proceeds go to Tgen and The Mylee Grace Research Fund for Rare Childhood Disorders (they have other causes as well). It sums up everything I could ever try to say or explain on why I fight so hard to bring awareness and a cute for Mitochondrial Disease. I thought the message on the decal was a great way to close out Mitochondrial Disease Awareness Week.

Arizona Mito Awareness 2012

I'm fairly certain I posted the following video before, but it's so educational and informational about Mitochondrial Disease, bringing it back to the forefront is a good thing. This video was made for the Mito Walk we did in Phoenix this past December. Landon is in this video, as are all of our Mito friends that are here in Arizona. Please take a minute to watch, and feel free to share it.

Mitochondrial Disease compared to a Battery

Tonight's post will be short and sweet, the above explanation about comparing Batteries to Mitochondrial Disease comes from the United Mitochondrial Disease Foundation. They are always emailing and putting out new informational flyers and such. They really do help explain how Mito relates and effects the real lives of those who are living with it. They are a great resource, and really care about the families and individuals affected by the disease.

 

Our Diagnosis and Journey

I know you've heard me say it time and time again, but truly our Mito family is such an amazing resource. We have connected with some of the most amazing families, and ladies that I consider some of my closest friends and God truly put them in our lives as a blessing. Thank You ladies (and gentlemen) for always being there to lend a hand, support, or to just listen.

 I have to admit when Landon was first diagnosed, it hit me like a brick wall. I will never forget the day the phone call came from the Pediatricians Office, all they said was that Landon's New Born Screen had come back abnormal and it was something they had never seen before. The next two weeks were a blur of doctors appointments, blood draws, and internet searches. The only things I could find on the internet scared me more and more. The Pediatrician sought every resource he could find, and got in touch with the geneticist in Phoenix. The Geneticists cleared their schedule for that Friday afternoon for us to come in. I compiled what must have been a bazillion pages worth of questions for them, and I was a nervous and anxious wreck. Landon's results from the blood test kept coming back in all different forms. Sometimes they would be abnormal, and sometimes they would be normal. It was at this point they decided that he had to have a skin biopsy to be properly diagnosed. So we knew that was on the agenda when we went to Phoenix.

Landon was three weeks old when we made the 2 hour trek to the Geneticists Office. I remember having to pull over on the side of the highway to puke because I was so scared, and had the worst migraine I can remember even to this date. The Geneticist was nice, he explained the disease that Landon's New Born Screen came back abnormal for, VLCAD. He told us that Landon 'didn't present or look like a child that had the disease, but we had to find out for sure.' They did a thorough check of him, we met the Nutritionist who went over his new diet, Metabolic Prescription Formula, Meds (that he had been on for a few days at this point), etc. It was all very over whelming, especially for a new and first time mom. I just remember sitting there praying over and over and over again, 'please God let the tests be wrong. I promise to do anything, just let the tests be wrong and Landon be o.k.'

The worst part of the day was when it was time for the skin biopsy. Landon was not put under for the procedure. they gave him some sugar water, and used a Lidicaine (a local anesthetic). They had two Geneticists come in for the procedure, a nurse, and then asked if I would help hold him down to which I refused. I held his tiny little hand while looking away and crying. He was pissed about the whole ordeal, screaming his poor little self to sleep. They took what looked like an apple corer, and cut a circular chunk of skin from the underside of his Right arm. They bandaged it with some antiseptic, and that was the end of it. We were told the skin would be grown in a lab in Phoenix for a month, and then sent to Baylor Hospital in Dallas (Ironic, isn't it?) where the testing would be done in their lab.

We waited 12 weeks for the results, and it was a grueling and quite possibly the longest 12 weeks of my life. During this time Landon was to be fed every 3 hours around the clock, let me tell you this is absolutely exhausting especially when you have no help. When we finally received the results, they were good and bad. Good because Landon has Non-Cardiac VLCAD, which they call Mild but to me it's really not an accurate representation. The news was bad, because he did in fact have VLCAD, a Mitochondrial Disease.

Things got easier the older Landon grew, once he was 6 months old we could space out feedings. He was able to go the number of hours per months old between feedings. For example, if he was 7 months old, then he could go 7 hours between feedings. This was much easier, and honestly I felt like a new person with that amount of sleep. Currently he is allowed to go 4 hours between snacks or Gatorade, and at night he takes Corn Starch before bed so he is able to sleep through the night.

We did some further testing on Landon when I was pregnant with Emeline. We were offered the chance to have a blood test done on Landon to see what his exact DNA  mutations for VLCAD were. We jumped at the chance, this also allowed us to have an amniocentesis on Emeline to see if she was affected by the disease as well. Through this test, which was done through Baylor in Corpus Christi, we discovered that Landon is the only known person in the world with his DNA mutations that cause VLCAD. Emeline luckily is only a carrier of the unknown mutation. VLCAD is an Autosomal Recessive Disease meaning that every pregnancy has a 1:4 chance of being affected by the disease, and that both parents must be carriers for the child to inherit it. After finding Landon's unknown mutation, the clinic rushed to test myself and my ex-husband. It was a simple blood test that told us a lot, we learned that my ex-husband is the carrier of the mutation known to cause VLCAD, and that I am the carrier of the unknown mutation that is also the reason why Landon is non-cardiac and 'mild.'

We have learned to live with the disease, as it is a part of our daily lives. Nothing sends chills down your back like your Mito kid that can't fast puking, having a high fever, refusing to eat due to illness, etc. We have spent way more time in the hospital than any child deserves, and Landon knows too much about 'hosipal' procedures. His Pre-School Class recently did a unit on hospitals and his teachers stopped me to tell me that he was telling his class all about being in the hospital, and how it makes you better and they give you prizes for 'pokes.' Pokes are blood sugar checks, IV's, basically anything involving a needle.

I will leave you with a series of pictures from Landon's Hospitalizations, this does not cover all of them. unfortunately.

 Landon in the PICU (Pediatric ICU) at 10 months old when his blood sugar dropped to 48. The diaper over his hand is covering his IV so he wouldn't pull at it, or pull it out. This inpatient stay was 4 days.

Landon playing blocks when he was Hospitalized with a cold. He had a fever of 104 on IB Profen, refused to eat, and could not maintain blood sugars on his own. This inpatient stay was 5 days.

Landon sitting with Emeline, he was hospitalized with a 'simple gastric bug' because he could not keep food down and his blood sugar dropped to 65. This inpatient stay lasted 4.5 days.