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


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


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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Saturday, September 21, 2013

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.

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Thursday, September 19, 2013

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.

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Wednesday, September 18, 2013

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.

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Tuesday, September 17, 2013

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.

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Monday, September 16, 2013

Where Does Mitochondrial Disease Hide?

The picture below is a great depiction of where Mitochondrial Disease hides, and really how and why it presents differently in each person. Landon presents as severely Hypoglycemic. Most people who don't know us would have no idea that he was in fact diagnosed with a terminal illness. He looks 'normal,' except maybe the Medical ID Bracelet that he wears. I tried to get him the most unrecognizable one that I could find, we went with a Road ID. But enough on that, and back to Landon's presentation of Mito.

Landon 'dumps quick,' which means that when he fasts or gets a simple virus his body dumps his blood sugar in a very rapid fashion. When he was 10 months old, he had a simple gastric bug...one that you and I have fought off numerous times with pushing fluids and rest, and his refusal to eat or drink (because none of us are really interested in that when we are puking, etc) caused his blood sugar to go from 84 to 48 in a matter of 2 - 2.5 hours. To put that into perspective, 48 is two (2) points above the body going into seizures and convulsions from severe low blood sugar. A lot of people upon hearing this tend to think he's diabetic, where in fact it's actually quite the opposite. If we would not have know about Landon's Mitochondrial Disease, we would have lost him to this simple stomach bug at 10 months old.

Landon's specific type of Mitochondrial Disease is called VLCAD, I will have a separate post about it later this week, but the cliff notes version for this post and simply put - his body does not make enough of the amino acid, levocarnitine, to break down very long chain fats, move them across the cell membranes and turn them into energy. He is on a very strict low fat diet, and more meds than most geriatric patients. For him, Gatorade is better than water. In fact when he is active, such as swimming, running, playing soccer, etc, we have to stop him for snack and gatorade breaks to make sure that he has enough to sustain his blood sugar.

I will leave this post with the scentsy warmer that was so graciously sent to us by another mom of a child with Mito. The image on the warmer is in honor of sweet Mylee Grace, whom we lost to this terrible disease last June. The green ribbon that you see on the warmer, as well as throughout the blog design is the Mitochondrial Disease Ribbon.  Mylee was only 5 years old when she lost the battle with this disease, and her family are very close friends of ours and have helped us in ways we could never repay. I found it fitting that we received this during Mito Awareness Week, and Landon told me tonight, 'mommy I am so glad that Mylee is living with us and is keeping me safe.'

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Sunday, September 15, 2013

Mitochondrial Disease Awareness Week 2013

It's that time of year again, this week is Mitochondrial Disease Awareness Week. As always, out ultimate goal is to raise awareness and find a cure for Mito. Mito is a terminal illness, and it kills more children then all the childhood cancers combine, yet only a handful of doctors know anything about it. Here in Arizona, there is not a Mito Specialist. Landon see's a geneticists, and he's considered a biochemical geneticists. The hospital where he is seen in Phoenix, is looking to add a Mito Specialist and rumors are there should be one here soon. We are really excited, this could mean a better continuity of care for Landon, and help for so many of our friends that only have a clinical diagnosis.

We consider ourselves incredibly lucky that Landon was caught on the New Born Screen, and also that we know his exact DNA mutations that cause his VLCAD. Most families are still searching for the cause of their child's Mitochondrial Disease. The problem with Mito is that it never presents the same from person to person, and diagnosis to diagnosis. Zebras are considered the 'mascot' for Mitochondrial Disease because no zebra has the same stripe pattern, similar to how Mito presents.

Throughout the week I will share parts of our journey, although most of it can be found on this blog, and facts that are known about Mito. I will also show some videos some friends of ours have made, showcasing Mitochondrial Disease. Landon is in a few of these videos as well.

The video I will start with today, is the latest one that has been done. This video is for 'Run for Kids,' which is for the P.F. Changs Rock n' Roll Marathon in Phoenix this upcoming January. Tgen, who is the leader in finding a cure for Mito and helping families achieve a diagnosis, is an official charity of the race, and they are fabulous friends of ours. Landon's Team Page can be found here ---> Team Landon. Our goal is to raise $1,000 for Tgen. I am planning on running in some manner for Landon, and I find it pretty neat that the race falls on Landon's 5th birthday. It'll be a great way to celebrate with all of his Mito friends.

Here is the video:

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Tuesday, August 27, 2013

Neet Feet

How to start this blog post...Landon received the most amazing gift today, a pair of shoes. Yes, you read that right, a pair of shoes. He received a pair of Peach's Neet Feet, they are a non-profit organization that has artists that hand paint shoes for amazing children such as Landon who have terminal and life long illnesses. You can find Peach's Neet Feet Here or on Facebook Here. They do amazing work, and help children to be brave as well as reward them for the tough medical issues that they go through in life. The artists volunteer their time and expertise to paint the shoes for these kids, which are paid for by sponsors. We are truly blessed to have them choose Landon for one of these amazing pairs of shoes.

As you can see from the above picture, he choose Jake and the Never Land Pirates as his 'theme' for his shoes. He was beyond excited, thrilled, whatever adjective you want to use to describe how incredibly happy he was to receive his shoes today. We are currently looking for the perfect 'pay it forward' to repay this amazing act of love and kindness that was bestowed upon Landon. He can't wait to wear them everywhere, but most especially to his Tgen Kickoff Party for the P.F. Changs Rock n' Roll Half Marathon here in AZ which happens to fall on his 5th birthday...perfect, right? I will be running for Landon, and would love to have a team to run with...if not, please run with us in spirit. His team information is here - Team Landon - Tgen Rock n' Roll for Rare Diseases.

Please give Peach's Neet Feet a like, and help us spread the word about such an amazing group that brings happiness to kids with rare and terminal diseases. They are doing amazing work, and we are blessed to have them show love to Landon and Mito.
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Monday, August 5, 2013

I hate this disease.

Hate is a strong word, and not one I use loosely or very often, but when it comes to VLCAD and Mitochondrial Disease it definitely fits. Rewind to this morning, today was supposed to be Landon's first day of Preschool. He was giddy with excitement to start at 'The Clubhouse' this morning, which is where his school has their Preschool Program. He's been talking about it for weeks, and went to visit in the mornings last week with his 4 year old class. 

This morning was pretty normal, as far as normal is in this house with meds and such. Landon was excited, but was being defiant which isn't abnormal for his age and when he's excited about something and not listening. He told me his tummy hurt, so I made him go potty. He seemed to be ok, but right before we walked out the door he said he was sick. I gave him a hug and felt his head, and he was hot and clammy. He then proceeded to puke 5 times all over the entry tile, and then more in the toilet. Insert change of plans here.

So I get E situated and off to school, and Landon and I head straight to TMC. We get there, hand them our protocol letter (thank God for these), and they take him right back. They're starting to get to know us there, we had an ER doctor that we had had before so it made things easier and she did remember him immediately. They take vitals, ask what's going on, and get right to helping him. He had an IV placed after they drew blood to draw labs and a full metabolic panel. They put some zofran in his IV to stop the vomiting, and then had him pee in a cup. Convincing him to pee in a cup is always a bit hilarious, he always tells me that, 'we don't pee any where except in the potty mommy.' He does listen, some times :D 

After a full bag of D10 Maintenance Fluids, we were able to get his labs back. His labs looked really good, but he did have +1 Ketones in his urine. They didn't believe this was enough to keep him, so they let us go with a zofran Rx and instructions to return if he started vomiting again, regular protocol for us anyways. The Geneticists called later and said he wasn't happy they let us go, but to 'pump him full of sugary fluids and calories.' 

Landon seems to be doing very well tonight, he likes to throw us for loops in the middle of the night so tonight will be very telling. I am relieved that they didn't keep him, and he came home and rested for the rest of the day. 

I hate this damn disease, I hate that it took a day from him that he was so excited to finally have come. Yes, he can have his 'first day of preschool' tomorrow, but it won't be the same and with all his other friends from his class. My four year old shouldn't be able to tell you step for step what happens when he has to go to the 'hospital.' Sorry for my mini rant, I just wish he could not be stripped of normal childhood things because he has to deal with this stupid disease. 

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Friday, July 26, 2013

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.

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Saturday, June 22, 2013

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.
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Friday, May 10, 2013

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. 

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Wednesday, May 1, 2013

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. 

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Saturday, March 23, 2013

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. 

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