Amazing Mito Friends

We are so lucky to have such amazing friends that we have come to know in the Mito Community. They are such a great source of support and love in the good times, the scary times, and the uncertain times. They will text/talk/help anytime of night and can spread prayers faster than anyone I know. They are such amazing people, and we are so blessed to know each and every one of them.

I was approached by an amazing and strong Mito mama before Christmas about an amazing program she and another Mito mom put together for the Mito kids for Christmas. They had sponsors that wanted to learn more about Mito, or had Mito or suspected Mito themselves. These sponsors wanted to send the kids affected by Mito Christmas gifts, how amazing is that! Landon was chosen to be one of these kids. We received the most amazing gifts all the way from Australia. Landon was sent hand crocheted animals, a super cute kangaroo, and an amazing DVD. We feel so blessed to have been a part of this program and to receive such amazing gifts. They are extending the program to include Birthday cards for the kids. Again, I know I already said it, but we are so lucky to have found such an amazing group of individuals. The support and love is just so amazing. Thank you so much to our sponsor, as well as all of the Mito Wish Upon a Star sponsors. You are truly a blessing to all of us, and the smiles on the kids faces are priceless.

This is a picture of the presents Landon's sponsor sent to him. The kids fight over who gets to carry them around the house, and who gets to take them to bed with them!

Christmas

The kids and I hope that everyone had an amazing Christmas! We went home to visit my family for a week, and it was amazing. We had a wonderful time playing with and visiting the cousins, grandparents, my aunts and uncles, and awesome friends. We feel so blessed that we were able to go home, and the support and love from everyone there is overwhelming and so, so great. We are truly blessed to have such amazing family and friends and really wish we could spend more time with them; hopefully soon.

The kids were spoiled (but not rotten), as always. We went shopping, saw ice sculptures, went down an ice slide (Landon and I), saw Santa (neither kid cried, I was shocked), played, and soaked up all the love and happiness. I promise to post pics soon after I finish my current organizing mission in the house here.

Please keep a few of our mito families in your prayers, there are quite a few of them in the hospital and others struggling with sicknesses this time of year.

Merry Christmas/Happy Holidays to you and your family, hope it was a great one.

Love,
Regan, Landon, and Emeline

Birthday pics!!

I received E's birthday photos today. They are so amazing, and many many thanks to super talented Michelle Rooney who took the pics for us. They came out absolutely amazing!!! We had some taken for our Christmas photos as well, I can't say enough about how much I love them.

My favorite one of her sitting!

So cute, even though E looks a little unsure of the camera above her!

LOVE this one of him!

She's walking so well now

Holding hands :D

He stole her cake for the smash pics, don't worry she wasn't interested in it. He picked it up and took it behind the bush and helped himself!

New Amazing Mito Video

Please take a moment to watch the new Mito video that has come out from the Mitochondrial Guild to aid in fundraising. It is very informative, and full of information.

Click on the link below and it will take you straight to the video on You Tube.
Katelyn's Story

E's 1st Birthday!

E turned 1 on 12/5, I had wanted to wait until I had her 1 year pictures back to post about her 1st birthday. I have the teaser picture back and it is so adorable that I could not wait. She had a wonderful double party with her friend Harrison (his bday is the day before hers) party here at the house with some close friends and some family that came in from NM! She is not a fan of cake at all. She tasted a few bites and was like, 'eh I'm good, thanks mom.' Not at all sure where she gets that from, because those of you that know me well, know one of my main loves in life is yummy cake.

She's walking all over the place now, and refuses to crawl at all. She's 28.3 inches and 18 lbs so still a peanut. Her hair has turned completely white blonde, it's really pretty. Part of me still hopes she gets some red in it, but it's not looking that way! Thanks to all who made her party and birthday a success we are blessed to have you in our lives!

Landon has a geneticist appointment on Friday, so I will update all of that when we get back from Phoenix.

Here's her teaser professional photo! She looks so big!

Here is one of her trying her cake at her party!

Finally, here is her amazing birthday cake a very talented friend made!

A short video of E walking! She took her first steps on November 7 to my good friend Nicole. She has been a little timid since, but really started walking all over the place the last few days!

Well hello there!

So um wow it's been awhile. So, so sorry. We have been super busy. We went to Dallas in October and had a blast visiting my family and friends and going to the fair for my birthday. Lately we have had a lot of visitors which has been great! My amazing friend Holly Day and her hubby and daughter came to visit and her hubby rode in the El Tour de Tucson (111 mile bike race!). We had a ton of fun and I loved having her here. Thanksgiving was nice and quiet, which is the way we like it. The kids and I will be headed to Dallas for Christmas and are so super excited! We can't way to go, my cousin Bryan will be there and I haven't seen him in a very long time!

E turns 1 on Monday (craziness I tell you). It's ridiculous how fast the time has flown with her. An amazing friend of a friend is taking her 1 year pics and I can't wait. They will be amazing, and I can't wait to share them with you!

I promise to start posting more. We have some 'behind the scenes' things going on that have kept us extremely busy lately and will through the end of next week. Don't worry the kids and I are fine. Landon is doing great and amazes me at how fast he picks up on things and learns them. He's like a giant sponge and I love watching him learn new things. E is walking all over the place, it's so fun. When she starts to lose her balance she sticks her little tush out to steady herself, it's so cute. Promise to post pics soon when we get all caught up.

Mito Warrior

Today is the final day of Mitochondrial Disease Awareness week. I am sad to see it end, but I know that myself and others directly involved and in the midst of this fight will continue to spread the word and help raise awareness throughout the entire year, not just this one week. The kids and I are taking the time to remember all the precious Mito angels we have lost (4 alone this week), and those that are still in the fight with us. All of these children, adults, their parents, loved ones and friends, are Mito Warriors to me. I would not be able to be as strong and as much of a warrior as I strive to be without the support and love from the other Mito families that we have met and become close with through this continual journey. So, thank you to all of you. It's wonderful to know that there are others routing for us and are there to text you and call you and help you through hospitalizations, medical procedures, awaiting test results, and the list goes on and on.

I found an new Mito blog today. I am really looking forward to sitting down and reading her journey. She has an etsy shop where she sells items she makes by hand and gives a portion of her profits towards Mito research and helping to find a cure. She is also having a giveaway from her etsy shop of items to help bring awareness to others. Her blog is called: Little Free Radical

Finally, a reminder in the form of a picture of why we continue to fight, raise awareness, and pray for a cure. So no kids have to be hospitalized for a simple stomach bug like Landon was in this photo. Absolutely heart breaking that these children (and adults) have to endure so much so early in their lives, and even at all.

This is when Landon was in the PICU at 10 months old b/c a simple gastric bug caused his blood sugar to drop from 84 to 48 (2 points about when seizures begin due to extremely low blood sugar) in a matter of a few short hours. The diaper (white bulge over his hand) is covering his D10 IV so he would not mess with it or try and pull it out. If we would not have known about his VLCADD, it is very likely that he would have slipped into a coma, had major seizures from low blood sugar, and even died. No one would have known to give him a D10 IV, or even to check his blood sugars. It would have been, "take him home and push fluids, it's just a gastric virus." The newborn screening is so important b/c without we would have never known. Please help us spread the word and raise awareness for kids (and adults) like Landon.

A Cure For Mito

Please take a minute, or six, to watch this amazing video about how complex Mitochondrial Disease is. Please help us find a cure.

Porch Lights for Mito!!

We have turned our porch Mito Green for the week! My amazing friend Nicole is also going to turn her porch green as well. It would have been helpful if we didn't have butter fingers and break not only the green light bulb right out of the package, but also the regular white one when we went to replace it..oops. Made for some good laughs though! So, we will hopefully be replacing it tomorrow (she lives across the street, yay!!)

Here's is how our porch looks! Are you willing to turn yours green to help raise awareness for Mitochondrial Disease and kids like Landon??

A few Mito Facts

I have gathered some important and interesting Mito facts from fellow Mito Moms, UMDF, and other various places. Please take a minute to read them, and see the fight that our kids, friends, and loved ones face.

~ There is no cure! Please continue to share this page and others to raise awareness for Mitochondrial Disease.

~ Mitochondrial disease is almost as common as childhood cancer, yet in the case of mito, there isn't a treatment protocol, no cure rate, only a handful of specialists and very little awareness!

~ Mitochondrial Disease is a debilitating and often fatal genetic disorder that robs the body's cells of energy causing organ systems to become damaged and fail. Think of a city, when it loses power completely it's called a "black-out" (and if it only has partial power it's called a "brown-out"), and during a black-out the city can no longer function properly, and sometimes shuts down completely. When a person has Mitochondrial Disease their body is like a city that is on a permanent "brown-out", with periodic "black-outs" (such as when there is organ failure or a mito crisis).

~ There is no treatment and no cure for this disease, and even in the medical community there is very little awareness of its existence (which often causes misdiagnosis and either delayed, inadequate, or non-existent treatment of the symptoms). We need more research and more doctors who both understand this complex disease and are willing to treat those affected. 

~ Every 30 minutes a child is born with a mitochondrial disease. Each year, there is an increase in the number of adults who are being diagnosed with mitochondrial disease.

~ Research tells us that between 1,000 and 4,000 children are born with a mitochondrial disease each year.

~ Research also indicates that 1 in every 200 healthy people may carry the mutation that could develop into a mitochondrial disease in their lifetime.

~  Mitochondrial Disease can masquerade as autism, bi-polar, celiac disease, Reflux (GERD), seizure disorders, scoliosis, auto-immune disease, chronic fatigue syndrome, anorexia (and other eating disorders), endocrine diseases such as diabetes, autonomic dysfunction…the list goes on...YET few are even tested for it?

~ Mitochondrial Disease Facts - Via www.mitoaction.org, "How is Mitochondrial Disease Diagnosed?
   ~ There is no reliable and consistent means of diagnosis.
   ~ Diagnosis can be made by one of the few physicians that specializes in mitochondrial disease.
   ~ Diagnosis can be made by blood DNA testing and/or muscle biopsy but neither of these tests are completely reliable."

   ~ Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy.
   ~ As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death
      will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended. (utmito.org)

Please Help us Raise Awareness for Mitochondrial Disorders, not only during this week for Awareness week but year round.

Mitochondrial Disease Awareness Week

September 18-24 is Mitochondrial Disease Awareness Week. Please help us bring awareness to this disease that plagues so many like Landon.

I will be posting things about Mito, raising awareness for Mito, and Landon's form of Mito throughout the week.

World's Best Brother

I recently got Landon a shirt that says this from Target (see picture below). It really does sum him up. He is so funny when it comes to him and E. When we are out and about running errands and what not, if someone comes up to Emeline he tells them "don't touch my sister." Most of them laugh and say, 'oh, how cute" and talk to him for a minute. Inevitably they turn back to E and again he repeats, "don't touch my sister." I always laugh and say he's very protective of her, and he truly is. Recently in August when he spent a day in the hospital ER for a small stomach bug, he repeatedly asked me, "mommy where's Emma, I miss her." He ran up to her as soon as we got back (she was at the neighbors, thanks Nicole!) and gave her a quiet kiss and hug b/c she was asleep. Even on his worst Mito days, he worries about her and wants to be near her. He is the only one that can really make her belly laugh, and the way she does it is reserved solely for playing with him. After everything this kiddo goes through he loves his sister so much. I know this sappy, but I had to brag on him for a bit. He goes through so much more than a normal child with meds, doctor visits, blood draws, simple stomach bugs and illnesses that other kids can fight at home he has to go be monitored or admitted, and he still has a heart of gold!

On a seperate note, I am looking into getting Landon a medical alert bracelet. Any suggestions?? I would need one that can with stand a 2.5 year old boy, but can also allow me to put all the information I would need to in order to make sure Landon gets the care he needs if for some reason I was not there with him (this is a huge worry/stresser for me).

As you can see, cooperation was not in order when it came to taking a picture in his shirt!

9 months!

E turned 9 months earlier this week. She is so active and makes us laugh every day. She and Landon have so, so much fun playing. I really love that she is old enough now to sit and play with him. She just loves when I put them both in her crib and Landon bounces on his knees. She just laughs and laughs and laughs this giant belly laugh. I just love to sit there and watch them; it really makes me smile! She has been crawling for a few weeks now, but is really getting to be quick with it. She also started saying "mamama" last week and she says "yea yea yea" as well. It's so fun, I love this age with her. Her well check with her stats isn't until later in month. It had to be rescheduled due to some other things that came up. I will post those stats when I get them after her appointment.

Landon is doing well also. He just loves to play with "Emma" as he calls her. He is so very smart and is learning so much every day. He can now sing Twinkle Twinkle, Itsy Bitsy Spider, His ABC's, many songs he hears on Barney or Sesame Street. He can count to 10, although sometimes he skips a few numbers that I assume he views as unimportant. He loves to read, swim and play "baseball game" which is me throwing a stuffed ball decorated to look like a baseball at his equally soft bat.

We are excited to look ahead to fall, and hopefully cooler temps! We are also getting ready for Mitochondrial Disease Awareness week, which is later this month so keep on the lookout for that!

I had to strap her in to her high chair so she could still long enough to get a picture! She's perpetual motion!

He looks so grown up!

Can't Freaking Wait

The List of Fried Food for the Texas State Fair came out today!!! OMG, I cannot freaking wait to go shove my face full of this goodness. If you know me at.all. you know how much I LOVE, LOVE, LOVE the Texas State Fair! We will be going when we go home to Dallas to visit for a few days in a few weeks!! Here is the link to the fried foods they will have this year. What's your favorite??

Fried Goodness 2011

Disclaimer: Landon obviously will not be indulging in these treats, just me and the other non FOD people (we are going with a big group of family and friends).

Amazing Friends

The kids and I have these truly amazing, generous, adorable, sweet, and kick butt friends. Yea, they rock that much. They live almost across the street from us (a few houses down, well we live in the apex of the loop so no one is really across from us directly). I'll call them by their initials L&N to keep their anonymity. Their son J has a genetic disorder, not anything like Landon, and he is truly amazing as well. They are such a blast and have really been a rock for the kids and I since we have had to return to Arizona. N has been a life saver in keeping the kids for me when I have to go places where they can't tag along, or like last week when I had to rush Landon to the ER for a virus and disorder related issues she took E without hesitation for me. N is also the best cook. Seriously. I wish I could effortlessly cook all the amazing things that she does. We usually have dinner with them once a week and we share in the cooking. It really is a blast. It usually works out to be Saturday nights when it's just me and E and I am missing Landon so, so much. They help keep me occupied (well other than E, she's cute and very fun), and my mind off missing him as much as possible. So I just wanted to share our appreciation of how wonderful they are, and what great christian friends they are. They truly are a blessing in my life. I call N my AZ Holly Day, and that is a HUGE deal. We Love Y'all and thanks for being such amazing people!

Here are a few pics from E playing with J on Saturday!

Having a blast 'riding' the Lion in J's room!

E the lion tamer!! She was so proud that she could sit up there all by herself.

Awareness!!

O.K. Those of you that know me, know how passionate I am about bringing awareness to Landon's disorder. There is an amazing page on facebook of a girl who is a Freshman at a High School in Dallas (couldn't be more perfect, right??). Her little brother has mito. It doesn't say specifically which disorder under mito, or if it's even known. Please go and like their facebook page and share it on your page. She is trying to spread mito awareness to 10,000 people in a week! This could do wonders for the mito community and getting the word out there. She is going to add a tab of "Mito Kids" and I submitted Landon to be a part of it (Mito Moms, there's a post on the page's wall on how to do this), so I am really hoping he gets put up there!! It's amazing what young people can do. I'm excited to watch and (hopefully) see the likes be WAY over $10,000 by the end of the 1 week period!

Here's the link! Wish GRANTed

S'mores cake and update

We are hanging in there. Spending most of our time indoors due to the heat. Landon and I have been playing soccer in the neighborhood park a few days a week to get out and to get some fun exercise. E loves to play in the grass and watch! We also enjoy going swimming at the neighborhood pool and of course as many trips down the slide as Landon can squeeze in!

E turned 8 months old on Friday, I just can't wrap my head around the fact that she will be 1 in 4 short months. Where has the last year gone??

We decided to try a new baking recipe this weekend, I have recently joined Pinterest and it's amazing (thanks Andrea!). I found this cake on there and just had to try it. It's a 7 layer s'mores cake, and the recipe came from this amazing blog; http://fatgirltrappedinaskinnybody.blogspot.com/2011/06/ultimate-smore-anniversary-cake.html It took me a bit to make it (read: 2 days) due to distractions and playing with the kids, but let me tell you, it was well worth it. Landon had a very, very small bite last night (it's not FOD friendly at.all.) and I couldn't even finish my small slice (see picture). So, I plan on having neighbors and friends over to help me eat this cake!!

I am hoping to get out some this next weekend and take the kids back to the Children's Museum. They had such a blast the first time we went, and it's indoors with AC! It doesn't hurt that we have a membership since we also have a zoo membership! Pictures to come for sure!

I will leave you with E's 8 month pics as well as pictures of this amazing cake!!

mmm....cake!

I can't get the picture to rotate sorry, she looks so big to me though!

Mito Video

This is a great Mito Video that I borrowed from another Mito mom. Warning, you made need tissues for it. It really drives the point across and explains it all well and shows you the faces of Mito. Landon is not in this, but I think it is a great resource and tool and everyone should watch it to help bring awareness and to Landon and mito kids like him.

I Love You sweet Landon and am so very, very blessed to be your mommy.'

Landon 2.5 and Emeline 7 month pictures!!

We went home to Dallas for 5.5. days and had a blast (will do another post about that)! While we were there my mom and I took the kids to get professional photos taken for Landon's 2.5 year photos and E's 7 months (we missed 6 months, but this is close enough!). I love how they turned out and can't wait to be able to put 1 of each kid on a canvas to add to my collection!

He is such a goober!

My favorite of Landon. He was very active so we didn't get a lot of him, but we did get good ones when he was momentarily still!

Nakey Baby!! My mom has one of me just like this at her age.

So sweet, we were trying to get one of her and Landon and she just wasn't having it.

More than happy to sit in the chair like a big girl!

One of my favorite pictures of Landon of all time is of him crying holding a rubber ducky, so I wanted one of her about the same age as well.

My mom has a picture of her at E's age in a dress almost exactly like this in a similar pose, this picture really means a lot to both of us, I can't wait to get them framed side by side!

New Mito Facts

New Mito Facts for thoughts...

Every 30 minutes a child is born that will develop a Mitochondrial Disease by age 10. The emerging consensus is that mitochondrial disease affects at least 1 in 500 children, which makes mito as common as childhood cancer

Definitely thought provoking and why we MUST spread the word and raise awareness about kids like Landon.

6/17/2011 Geneticist Appointment

Landon had a Geneticist Appointment on 6/17/11 with the Geneticist in Phoenix.It was pretty un-eventful. We went over the information from his appointment in Ft. Worth on March 10th and the changes they made to his meds, diet, etc. The geneticist agreed with them and said that the Ft. Worth Geneticist did a very good job, and he agreed with and supported and loved everything that she had done. He examined Landon to make sure that everything looked and sounded fine. No heart murmurs, his liver is no enlarged and he is very active. Landon is 37.25 inches and 31.3 lbs. The Geneticist asked if he knew his colors, also saying "well, he's 2.5 so probably not." So I told him to ask him, and Landon named them all correctly. So the geneticist said "I take it he doesn't have any intellectual delays" and I looked at him puzzled and said "no, absolutely not." He then told me he wasn't developmentally delayed either, and I said "yes, that is correct." Those things took me off guard and kid of bugged me. Landon has NEVER had any of that, and they should know that. So we explained about being in Dallas and that whole mess and why we were back there with them.

Since Landon had had blood drawn in May because he was having leg pain and we wanted to make sure it wasn't due to raised CK levels or causing other issues such as cardiomyopathy, etc. Leg pain can be the first sign that his body is breaking down his muscles and using them for energy instead of the MCT Oil that he is taking for that..it is VERY bad, if not treated (D10 IV for a period of time), then it can cause Renal Failure and kill him. I explained all of this to the Geneticist and told him that the Genetic Counselor from Ft. Worth called them to ask them about it and where to get his blood drawn, I called, and the Ft. Worth Nutritionist called as well. He told me that he NEVER got a message or anything about it and knew nothing about what was going on...ummm, this concerns the heck out me, and is not acceptable. He was going to look into it and see what happened.

So, we don't have to go back and be seen until December 16th. So they have extended his visits in between to 6 months which is great. They are still thrilled that he has only been hospitalized once in his entire life...which is apparently unheard of.

His Regiment is as follows:

6 mL MCT Oil 4X day
6 mL Levo-Carnitine 2X day
1 DHA Vitamin 1X day

I'll leave you with some pictures of the kids playing in the pool:

E loved these little fountains and splashing in them.

I could not get him out of the water, he's like a little fish!

Bluebonnet pics

My amazing and talented friend, Melody Hamilton, took these amazing pics of the kids and I in April in the bluebonnet fields in Garland, TX. I wanted to share them, they are my current favs and capture the children so well.

Love this one, it's so sweet!

Sweet girl!

My favorite material thing ever, thanks Andrea & Bryan; y'all are the best.

Mother & Daughter!

Typical Landon, always on the move!

My favorite as you know!

We hope to get back to Dallas soon and get some more pics by Melody, she does such a wonderful job and is such a wonderful and great friend. She has also been a rock through everything that it going on. Thanks Mel, we <3 you!

Oh, Hai!!!

Wow, it's been awhile. I don't even know where to start. There's a lot going on in our lives right now (that I will get to later, at a different time). We have been super busy. We are back in AZ and have been since 4/25, and I'll just leave it at that. We really, really miss our Dallas family and pray that we will be able to go visit them soon. They have been great and coming to visit us as much as possible until we are able to get back for a visit. I wanted to make a list of things I love and am thankful for (thanks Andrea for the idea), as well as leaving some updated pics of the kids!

20 things I love and are thankful for:

1) Without a doubt, my kids are number 1. They keep me going, make me laugh, and make life worth living. Love You Landon and E!!

2) My family. More specifically my mom, aunt, cousin, and dad. They have been my rock in the a before mentioned life issues.

3) My friends. More specifically Holly Day, Liz, Amanda, Melody, and my mommy friends!

4) Coffee, more specifically Folgers Vanilla Biscotti Coffee in my Keurig (thanks mom!) Most days, this is my sanity and the 'me time' I can get for a second!

5) My neighbors, y'all completely rock. Thanks for being so awesome, welcoming us back and helping so much. Especially Nicole, Carey, and Sophie!!

6) Cooking with the kids! We have a blast. It's a stress reliever, and Landon LOVES to be my tester. We have tried many, many things. 

7) Owls for E! Thanks to my friend Amanda I have fallen completely in Love with Owls on her, for her, and in her room. Her 1st Birthday Theme has already been decided to be Owls as well!!

8) Lollipops, or Hollipops as Landon calls them. I can bribe him to do just about anything with them!

9) Elmo, Sesame Street, & Barney! These 3 allow me to get my house work done!!

10) E's growls! She growls a lot, and without fail it always makes me laugh!

11) My FOD moms & Friends. Especially Debbie & Leslie, <3 y'all!

12) Breakfast Tacos & French Toast...the only thing I can convince Landon to eat for breakfast right now. They are super yummy, and I pack them with things that are good for him and he doesn't even know it!

13) Dr.Pepper, my Texas roots coming in here!

14) My cousin and her kids, they give me much needed comical relief daily!

15) TX BBQ, the stuff they have here sucks, bad. I miss my Tx bbq and nothing compares to it.

16) The innocence of my kids. They are so funny, and have such a simple view on life. I think all of us could use that more.

17) My Dec moms, don't know what I would do without you girls, you keep me entertained, give me advise, and make me laugh..thanks! And your LO's are super, super cute!!

18) Modern Family, HGTV, Castle, and Body of Proof...hillarious and make me think, and are a great escape from reality for a bit.

19) Peach Bellini's (when not nursing), yumm.

20) Starbucks. On the rare occasion I get to go get one, it's nice and super yummy!

Pics of the Kids:

There is nothing sweeter than this picture...including the fact that he swiped her paci!

My little book worm!

Oh, how the time flies! How can she be this big already?!?

Hey punk, give me my paci back!

Easter Bunny!!

I took the kids to see the Easter Bunny tonight. They did wonderfully. Emma was very enthralled in the lights from the flash, and Landon was happy as could be to sit there and hold the yellow Easter egg while smiling and saying cheese. I am really thrilled they had so much fun, I was curious to see if Landon would be scared of this creature with an abnormally large head as my cousin Andrea puts it! We went and played in the play area of the mall after wards and then had dippin dots (rainbow sherbet of course) once Landon was all played out! We hope everyone has a good holy week. We are spending it with our family and friends, and hope you are able to do the same!

New badge

My friend Lindsay made this badge for Landon. Feel free to steal it and use it, but please just give her the credit for it. I am so stinkin' excited about it. It's the mito ribbon and then of course the VLCADD part is Landon's disorder. I really hope to spread it around and to hopefully be able to use it to spread awareness for Landon and other's with VLCADD and Mito. Thanks Again Lindsay, you rock!

Food Post

I am not one to usually say anything or talk about brands when it comes to products. But, I am going to make an exception this time. I have found some amazing stuff that I believe will be helpful to my VLCAD friends and well anyone looking for loq fat snack or food options. It is always exciting to find a snack that is within Landon's calorie to fat ratio set for by his metabolic nutritionist (1 gram of fat per 50 calories), but it's even more exciting to find ones that have ZERO fat!

I was wondering through Sam's last night with my mom looking for snack options for Landon that he could have on a regular basis (not an easy task, let me tell you...or usually a cheap one). But, we stopped at these pretzel chip/cracker things. When I checked the fat on the backit was ZERO, I was so excited. Not only does Landon LOVE pretzels, but they are usually really hard to find within his fat ratio. These pretzels have 0 fat and only 110 calories. I literally did a small happy dance in the middle of aisle at Sam's. So, i took a picture so you could all see them and hopefully find them near you. I have only seen them at Sam's, but they may be else where and I just haven't noticed.

I know most fat free foods  have no taste, but I always taste things when I give them to Landon. That way if he doesn't like them I will know why, and also just out of curiosity. I am not a pretzel eater by any means, but even I can't put these suckers down...they are really that good. I think with a little cheese (we will probably use laughing cow, and just a small amount) they would be even better!

My other food rave of the day is powdered peanut butter. I have searched high and low for this stuff and wasn't able to find it. My dad and I wandered into this little store right by his office a week or so ago. They had a sign all lit up that said they sold fat free foods (I was skeptical, but figured why not?). They had salad dressings and what not (things Landon clearly is not interested in yet, but could be used for marinades down the road), and when I was asking about their pastries (it's apparently a bakery too but only gluten free, not fat free...urgh), I saw on the counter the powdered peanut butter. My dad thought i was nuts that I was so excited over something so odd...but I quickly educated him on the facts. Powdered peanut butter has 85% less fat than regular peanut butter. This kind (see pic below) has 1.5 grams of fat and only 45 calories, clearly within Landon's ratio!! Regular peanut butter has 16 grams of fat and 190 calories, NOT in our ratio of acceptable foods. The store also had it in powdered peanut butter with a little bit of chocolate, which sounds yummy and I may get next time for him...but at $8 a container I couldn't justify it until we needed more.

Playing at the Park

I took the kiddos to the park today. Landon had a blast playing, sliding, running, and swinging. Ms. Emeline had a great time snoozing away in her sling! The weather was beautiful today so I figured it would be nice to get Landon out to play and burn off some of his energy...I truly wish I had half of his energy, I could get so much done! We had fun and then came home and ate lunch and are about to take a nap. Have a great day everyone!

Ready, Set, Go!!



This boy loves to slide!!

Brave Boy! He accidentally got stuck like this and bravely slid down this way. I caught him at the bottom and we celebrated how brave he is!!

He is getting so big, I  love it but at the same time wish it would slow down just a bit. And yes, the Binky thief was at it again. It was confiscated right after I took the picture.



Recent pics & update!

Sorry for being MIA (again). It has been a complete whirlwind since Emeline was born. With the holidays and my mom coming to visit for 2 weeks. Then after all of that slowed down and we were getting back to "normal" I was rushed to the ER in an ambulance for extreme and excruciating right side abdominal pain. Spent 2 days and 1 night in the hospital to find out I needed Emergency Gallbladder surgery ASAP, and that I had a small amount of fluid around my heart and lungs (from having E, it happens in some women) and I am not to have any more children...good thing we were done. So, I had my Gallbladder removed on 1/10/11 and my Aunt came to stay with us for a week to help out. Then Landon turned 2 on 1/19/11 and we left for Dallas on 1/20/11 (we drove) to surprise my mom for her birthday on 1/25/11. We are still in Dallas visiting and having a great time. We've played in the record snow they have here, and celebrated lots and lots of birthdays and the grandparents are having a blast with the kiddos.

In good news Landon has not been hospitalized in over a year, in fact it's been 14 months!! I am so happy. He is doing really great! At his 2 year well check he was 37 inches (tall!) and 29.8 pounds. We see the Geneticist in March (after having our appt rescheduled buckoos of times by them), so I am interested to see how he is doing from a Metabolic stand point. I am expecting great news like always!!

So here are some new pics of the kiddos and a few from Christmas that were taken by our good friend Garry and his dad...thanks guys!

Emeline in my Christening gown the day she was baptised!

Love this!

Playing 'Toddler Teasers' with Landon waiting for the pictures to start...oops. I love this picture though.



**It's not letting me add the other ones right now, so I will add them tomorrow when I get the chance (read: nap time!).**