Landon's Place

Happy 3rd Birthday Sweet Boy!

2012-01-21T21:43:00.000-08:00

On Thursday Landon turned 3, THREE. I can't believe he is so big, my little guy isn't really all that little anymore. He is 40 inches and 33 lbs, he's going to be a tall one! We had a small birthday party with his neighborhood friends at the park. It was TX Rangers themed of course, that boy loves him some Texas Rangers Baseball. He had a blast, and so did E. We went to the zoo, played at the park, and overall had a great day. He told me, 'this is the best birthday in the whole wide world, mommy' so I am assuming he enjoyed it as much as we did.

Birthday boy and his cake!

Close up of his cake, Shannon does such an amazing job!

E having a blast playing football!

Amazing Mito Friends

2011-12-31T14:46:00.000-08:00

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

2011-12-26T20:22:00.000-08:00

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!!

2011-12-17T14:20:00.000-08:00

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

2011-12-13T08:44:00.000-08:00

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!

2011-12-12T12:56:00.000-08:00

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!

2011-12-01T20:19:00.000-08:00

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!

2011-11-30T21:11:00.000-08:00

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

2011-09-24T12:32:00.000-07:00

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

2011-09-22T19:50:00.000-07:00

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!!

2011-09-21T19:18:00.000-07:00

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

2011-09-20T21:48:00.000-07:00

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

2011-09-18T19:58:00.000-07:00

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

2011-09-14T15:50:00.000-07:00

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!

2011-09-10T05:49:00.000-07:00

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

2011-08-31T20:29:00.000-07:00

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

2011-08-28T22:19:00.000-07:00

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!!

2011-08-21T21:09:00.000-07:00

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

2011-08-08T10:47:00.000-07:00

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

2011-07-25T22:44:00.000-07:00

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!!

2011-07-16T13:03:00.000-07:00

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

2011-07-10T07:51:00.001-07:00

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

2011-06-28T15:14:00.000-07:00

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

2011-06-15T13:47:00.000-07:00

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!!!

2011-06-10T15:25:00.000-07:00

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!!

2011-04-20T20:47:00.000-07:00

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

2011-04-12T20:10:00.000-07:00

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

2011-02-25T08:23:00.000-08:00

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

2011-02-16T10:21:00.000-08:00

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!

2011-02-10T11:07:00.000-08:00

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!).**

Emeline's 3 Hour Birth Story!!

2010-12-13T09:18:00.000-08:00

Saturday 12/4/2010

I woke up at 1:30 a.m. with contractions that were like horrible period cramps. They would range from 6-15 minutes apart and were about 30 seconds to a minute long. I switched sides I was laying on, but nothing stopped them. Finally around 3:00 a.m. they slowed down enough that I was able to fall asleep. At 4:30 a.m. I woke up again because they were back in full force, but this time mostly in my back. Again they were anywhere from 4-10 minutes apart. I rolled around trying to get comfy and eventually ended up in Landon’s room on the bed in there. Again, they slowed down enough at about 6:30 a.m. that I was able to fall asleep until Landon woke up at 7:15. So, I got up with Landon and we did our normal routine. The contractions continued all morning long, mostly in my back and ranging from 6-10 minutes apart. I played with Landon, ate, did some laundry, picked up the house, etc. Scott and Z went to the grocery store and came home. We all had lunch, although I was so nauseas by this time that I let Landon eat my lunch and I had just water and a few bites here and there. Contractions were still mostly in my back, and I wasn’t convinced this was real.” After lunch Scott and I called everyone in the neighborhood to call off the cookie exchange the next day just in case, and then we headed to the bakery where my mom had ordered us cookies for the party to pick them up. On the way out there and while out and about and on the way home my contractions were 4-6 minutes apart and became more intense, but still mostly in my back. So, I called the OB. They told me to go to L&D to be checked and see what was going on. So, we got home, got Landon settled and down for a nap and Carey and Sean came up to watch him for us. We headed to the hospital and checked in around 4:30 p.m. They monitored me and I was contracting 4-6 minutes apart, but they weren’t as intense as they wanted to see them. They checked me and I was 3.5 cm dilated and 50% effaced…up from 2 cm at my appt on Thursday. They sent me walking the halls for an hour to see if I would progress. Scott wasn’t feeling well so he went to his mom’s to rest until we knew more about what was going on. They checked me at 6:oo p.m. after my hour long walk, no progress except my cervix had moved more posterior. Still contracting every 4-6 minutes, so the nurse called the OB and told them what was going on. They knew I was in early labor and with this being my second baby and the fact that we live 45 minutes from the hospital with no traffic they decided to admit me. They were going to watch me over night and if I hadn’t made significant progress on my own by morning they would induce me then. So, I called Scott and he came and helped me get settled in to L&D and then he went home to be with the boys. After 4 stabs and no luck trying to get an IV in, they called Anesthesia to do it…ouch, but they got it the first try. So, I settled in and took my Ambien and slept on and off all night long.

Sunday December 5, 2010

I woke up around 7:00 a.m. and talked to Landon and Scott on the phone for a few minutes before using the restroom, getting settled in to start the Pitocin. Pitocin was started at 8:00 a.m. once Scott had arrived and my contractions I was still having became more intense almost immediately. They were doable at first, but went to extremely intense and painful very quickly. I was checked by the OB when she came in around 8:30 a.m. and was 4 cm. She broke my water, which had Muconium in it, so they had to put in a catheter to flush fluid through my uterus to get as much of it out as they could before she was born…ouch is about all I have to say about that. Contractions became even more intense and unbearable after my water was broke and the catheter was placed. I asked for an Epidural because I was crying through contractions and they were coming every 2 minutes! After getting the Epi I had to be rolled around because it was working on my left side, but I was still crying through contractions since they were in full force on my right side. About 5-10 minutes later and lots of rolling, I was finally unable to feel them and to relax. Well, then Emeline’s heart rate would drop into the 50’s come back to the low 100’s and repeat for about 4 minutes…things got hectic at this point. They flipped me to my left side and gave me oxygen and called in more nurses. At this point I could feel her coming, the pressure in my bottom area was so intense I swore that’s where she was going to come out. The Catheter was being pushed out with all the pressure, and that hurt like heck, but the OB had to be the one to take it out so I had to deal with it. Every contraction that came I swore she was going to come out on her own, the pressure was that intense. The OB finally got there and got everything all set up and we started pushing. 3 short pushes and her head was out, and a very small 4th push and she was completely out…less than 10 minutes total. Emeline Arley Heise was born at 10:47 a.m. weighing 7 lbs 8.3 oz and was 20.5 inches long. They whisked her away immediately due to the Muconium and the NICU nurse and Doctor worked on her for about 30-45 minutes. They had to suck out her lungs, mouth, nose, etc with a intubator suctioner since she had Muconium in her lungs. She was also born with her cord loosely wrapped around her neck, so they had to check her for that too. They were able to just pull it off, so it wasn’t serious, but still scary.

She is doing great now, feeding is going well and the boys love having a sister. Here are a few more pics!!
**Updated with the Zach picture**

Hi Pretty Girl!

First Photo with Mom and Dad

Landon came to visit at the hospital! Unfortunately Z was sick so he couldn't come.

Taking a nap with daddy. So cozy!!

Loving the vibrating chair!

Zach and E

Miss Emeline is here!!!

2010-12-06T01:57:00.000-08:00

Ms. Emeline decided to choose her own birthdaey and make her appearance yesterday, December 5, 2010at 10:47 a.m. after only 3 hours of labor!! She weighed 7lbs 8.3 oz (a whole pound and a half smaller than Landon!!) and was 20.5 inches long. She looks just like her big brother, but has blonde hair!! Everyone of course is smitten with her. Breast feeding is going well so far, I think having done it before really helps with staaying calm and not getting frustrated as easily. I will post a birth story when I get more time, but for now here are some pictures!

shortly after birth.

She looks exactly like Landon did as a Newborn to me, except he had WAY chubbier cheeks!

35 weeks (a day early)

2010-11-09T08:18:00.000-08:00

Tomorrow will be 35 weeks with 35 days to go! Of course this doesn't apply to us too much since I will be induced at 39 weeks because of the many factors that have been going on throughout this pregnacy. So, we have 4 weeks (at the latest) until we meet Ms. Emeline!!

We are pretty good to go. I still need to do her laundry and pack the hospital bag, but for some reason I am not in any hurry to do any of this. Which could very well come back to bite me. We do still need to put the car seat together and install it, but the installation can wait until she is actually here if we need too.

I have been in and out of Labor and Delivery twice this week for a massive headache that I still can't manage to get rid of, even with the tylenol with Codeine they gave me. We were also there for dizziness, and faintness every time I stood up, and my pulse was around 120 eek! While there they found I had protein in my urine, so they are going to watch me for pre-e. I have 2 of the signs, the protein and the headache so we will see how it plays out.

Hopefully this week will be a little bit calmer. I don't go back to the OB until the 16th so we will see what they say about things then, we will also start weekly appointments then too.

Here is a picture from this week, I think she has dropped at least some!

Sorry it's a little grainy, I took it with my cell phone..not the best quality camera.

Trick-or-Treat

2010-11-03T22:59:00.000-07:00

Sorry we have been MIA for so long, but we are back and kicking now!! End of September and October were super crazy, but things have finally slowed down a bit.

We hope that everyone had a Happy Halloween. We went Trick-or-Treating with our neighbors and good friends Carey and Sean! We also had a blast at theneighborhood block party, and have tons of candy to show for it!

Today marks the point of no return for baby Emeline. If she were to decide to make her debut, they would let her w/o any intervention other than a steroid shot for her lungs. We also set our induction date yesterday for December 9th!! They have chosen to induce at 39 weeks due to the excruciating hip and tailbone pain I have had throughout from my pelvic bones seperating, and also to try an avoid the list of complications I had when Landon was born because he was too big for me. We are excited to finally know when we will get to meet her, but have a lot to do still to get ready!

I am going to leave this post short and leave you with a picture of Landon in his Halloween Costume. He was an A-10 pilot (hog driver) on Halloween, but in this picture he is a B-52 navigator. The patches and medal he is wearing on his flight suit as well as the rank (Captain) were my dads from when he served in Vietnam as you guessed it a B-52 navigator.

26 weeks

2010-09-10T09:30:00.000-07:00

Since so many friends and family have asked for it, here is my 26 weeks bump picture with baby E. Please excuse the no make up look and comfy clothes!

Beautiful

2010-09-06T21:07:00.000-07:00

I happened upon this website on accident and absolutely fell in love with this necklace. It's a secret pleasure of mine to own it one day, but until then I can be found drooling over it. The creator, Lisa, also has an amazing blog that I really love to read. She takes the best and most artsy pictures, and is a woman after my own heart because she is out to raise awareness for her son who has a disability as well. Her website is: http://www.lisaleonardonline.com/ if you are interested in checking out her amazing jewelry and blog! Below is my favorite necklace, it is called the heart strings necklace and after everything with Landon, it would just be perfect!

Team Landon

2010-08-30T16:43:00.000-07:00

We are going to be virtually walking in the UMDF (Unitied Mitochondrial Disease Foundation) walk for energy this year. We cannot participate in the walk b/c it is Dec. 19th right after Emeline will be here. So, we have created a team of virtual walkers to help raise awareness for Landon's disorder (non-cardiac VLCAD) and others like it. Please join our team, and you can also order a t-shirt for $7.50. The girls will have "Landon's Ladies" on the back of them, and the one's for the guys will say "Team Landon" on them. Please help us to bring about more awareness to FOAD's and Mito disorders. You can join our team by clicking on the link below!

Team Landon/Landon's Ladies

Amnio Results!

2010-08-24T16:23:00.000-07:00

We finally got the amnio results for Emeline on Landon's Disorder (VLCADD). Emeline is only a carrier for the unknown "variant" for the disorder. Which means, that there is no way she possibly has the disorder!! We are so relieved and excited. I am very interested in talking to the geneticist about it at Landon's next appt on the 7th to see what they have to say about it all. We do know it is a variant of the disorder that no one has ever seen before, and they are very interested in it. The theory is that this unknown "variant" is why Landon does not present as or have the classic symptoms and issues as other children with the disorder.

I am most looking forward to not having to repeat the every 3 hour feedings until 6 months that we had to do with Landon, and this baby can be exclusively breast fed since she won't have to have any of the Rx formula's that Landon did...our wallets let out a huge sigh of relief!!!

On a ntoher note: Landon is doing wonderfully. He had pictures taken at Little Gym (see below). They are copywrited by Dodson Photography so please don't copy them. He's a bundle of energy and a ton of fun. He says lots and lots of words now like: mama, dada, hi dach (zach), boomer, yuck yuck, uh oh, tank ooh, bess ooh, hello, bye, uh huh, yes, yea, ma, tons of animal noises and their names" and many others. He also shakes his head no when he doesn't want something, and can jump and get off of the ground! It's crazy to see him change so much week by week!

Playing on the Parallel Bars is fun!

It's a Girl!!

2010-08-07T11:22:00.000-07:00

Landon and Zach will be getting a little sister in December, we are so very excited to finally have a little girl in the house!! We are still awaiting amnio results on whether or not she has VLCAD like Landon, but it will probably be September before we know anything more about it. They also took blood from Scott and I since Landon has a never before seen DNA mutation, and they are curious to learn more about it! So, we are excited to see what they can find out about it. Prayers please though, that our little girl is unaffected by the disorder, and that we will get great amnio results.

We have come up with a name for her! We wanted a German name since Scott's heritage is German and mine is Irish...well Landon Patrick is about as Irish as you can get, so we went German this time around. So without further stalling, her name is: Emeline Arley Heise!!

I will post u/s pictures from our anatomy scan (all 3 of them), once I get the good camera charged since our scanner is currently on the fritz!

Happy 4th of July!

2010-07-04T21:32:00.000-07:00

We spent the day at home relaxing and hanging out. We did some house work here and there. Scott and Zach put up a new baby gate at the top of our stairs, that is much much easier to use. We can also now put a gate across Landon's room when he gets his twin bed sometime in the early fall.

Scott grilled out and as usual made amazing steaks, and then we watched fireworks from our bedroom window in the air conditioning! Hope everyone had a wonderful 4th!

Playing with Daddy in the new outside fireplace!!

Looking up at daddy!

Playing with Grandma's dog, Jenna!

New Backyard Fireplace!

2010-07-02T21:00:00.000-07:00

We had our fireplace installed in our backyard this week! We really love it. Landon also had a blast playing in it before we started painting it. He thinks it is a new play house! We really love it, and I will post more pictures when we are done painting it this weekend!

Landon having a blast sitting inside the fireplace. Good view of the flagstone floor and brick lining the inside as well!

Good view od the slate surrounding the opening, and a very happy toddler!!!

Landon is a medical anomally!

2010-06-22T08:59:00.000-07:00

First off for those that don't already know, we are expecting baby #2 mid December! After talking extensively to the Geneticist, the Genetic Counselor, as well as having the OB and Pedi talk to them as well we decided to go ahead and have the blood test done to try and find Landon's DNA mutations that are responsible for him having non-cardiac VLCADD.

So, yesterday after about a month I finally got the results back from his test. It took a few days to get a sit down over the phone conversation with the Geneticist as well...we understand they are busy. They discovered one of the known mutations that causes his disorder. Then, they also discovered a mutation that no one has EVER seen before! It's crazy to me and they are quitre surprised by it, but he will now be the subject of lots of journals and teaching materials. They are convinced that this 2nd mutation is what causes him to not show any outwards signs or even present as having the disorder unless he gets sick with a gastric bug! As well as telling us this is more than likely why he has no issues with his heart liver, or muscles that they can find anywhere. Is it odd to be a proud mommy, since he has taught the medical community something new! This will also help in treating him in the future, since they now know that he does not have both known mutation for the disorder, only one!!

Now what this means for this baby...we will have an amnio at 17 weeks (which I am scared to death of). This was chosen as the best course of action because according to the Geneticist if baby has VLCADD, then there is a small chance that it can be passed on to me until delivery. Obviously, we are hoping to find no mutations in this baby. But, if we do find the one that is known to cause the disorder...they will not be able to tell us for sure if the baby has the disorder or not. We will know that baby will then have a 25% chance of having the disorder (same exact as Landon's), and a 50% chance of being a carrier. But, that they will not be completely unaffected. Please, Please, Please....pray or whatever you do that they do not find any trace of the mutation that the causes the disorder in this baby. Landon would be my special guy, and that would be it.

If baby does have it, we know how to handle it and live with it. It would be the same thing we are doing with Landon now. We also know now that they would not keep baby in the NICU for a longer hospital stay to be watched. We would get to bring them home at a regular time (barring anything else like being a preemie, etc), and they would just be on the same meds as Landon. I can still nurse, but may have the same protocol as Landon where he was nursed 1/2 the time and fed Lipistart the other half of the time. But, we are hoping and so far they are saying without the second known mutation that we could probably exclusivley nurse and give the baby Carnitine.

I am excited that we were able to help teach Dr's and hopefully help other families by the finidings from Landon's test, but also a little bummed that we may not be able to know for sure if this baby has the disorder or not. Thoughts and Prayers please, please, please.

New VLCADD info

2010-06-09T21:44:00.000-07:00

I met with a genetic counselor on Monday to talk about amniocentesis for this new baby. We are going to have one done at 17 weeks as long as the lab in Houston can find the 2 DNA mutations (1 from me, and 1 from Scott) that Landon has. If they cannpt find the mutations, then we will not being doing the amnio because there is no point.

If the amnio is not done, then once the baby is born they will be treated like they have non-cardiac VLCADD (just like Landon), until they know otherwise. Luckily, if the new baby does have it, then it will be exactly the same as Landon's because it is the same DNA mutation. Of course we are routing for unaffected or carrier only status for this one. Also, if we cannot do the amnio, or it comes back as the baby having VLCADD then starting at 26 weeks I will have to have weekly blood draws to check my CK (Creatine Kinaise...tells you if the body is breaking down your muscles) levels and Liver enzymes tested. The same exact tests they do on Landon every time we go to the geneticist in Phoenix. So, we are hoping and praying (and really hope you will join us as well) that they can find Landon's DNA mutations. We should know in the next week or so.

I did learn some new information about VLCADD genetically speaking from the genetic counselor we talked to at the High Risk OB's office. So, here is what I learned:

The mutation for VLCADD occurs on chromosome 17
Since Landon has the non cardiac version, his body isn't missing the entire protein the chromosome makes, just a part of it.
Scott and I's are the same way..although we make more of the protein then he does b/c we are only carriers.
To find his mutation they will literally unwind the chromosomes and look at place (it think its 68) to see where the protein code is off, or where it varies from "normal".
Then when/if we can have the amnio done, they can go to that exact place and look for it on the babys 17th chromosome

Big Brother!!!

2010-06-02T20:36:00.000-07:00

Landon is going to be a big brother on/or around December 15th!! We are so excited and can't wait to find out if it's a boy or a girl!!

First Shiner!

2010-05-28T09:24:00.000-07:00

Landon took a spill the other day at my moms house, and now has his first black eye. Poor guy, he was running and having so much fun and he got ahead of himself and tripped and fell. I felt so bad for him. His eye doesn't look as bad as I imagined it would, but it still breaks my heart. I know he is a little boy, and this is one of many bumps and bruises he will get...but I was hoping he would be a little bit older first.

The scrape under the nose is from a previous fall running at Starbucks. He looks so peaceful, and needless to say it has not slowed him down any at all. In fact other than right after it happened, he has been his normal self. Full of constant movement, curiosity, and love!

Hair Cut!

2010-05-15T14:37:00.000-07:00

Landon got his summer hair cut yesterday! I asked the lady to trim and fade it, yea umm she apparently didn't understand. It is much shorter than we wanted it, but at least he will be in cool in this warm Arizona weather! And, it will grow back. His hair grows really quick so maybe we can go longer between hair cuts this time. The lady wanted to buzz it, and I told her absolutely not, I can do that at home by myself...ha ha.

Front View of his haircut.

Back view of his haircut.

Geneticist Appointment 5/4/2010

2010-05-05T12:19:00.000-07:00

Scott and I took Landon to Phoenix yesterday for his check up with the geneticist. They did all the usual stuff weight, height, head circumfrance, etc. He hadn't changed much except he gained 6 oz from his 15 month appointment so he now weighs 22 lbs and 8 oz. His head is 50 inches and he is still 33.75 inches long!

They said he looked great. He is on par for development...he is normal and above normal in all areas. They were all very impressed that he now has 30 asl sign words that he uses all of the time. They also loved that he has 3 animal sounds...cow, lion, and pig!

We are keeping his diet the same...20-30 grams of fat a day and the rest low fat. We will be staying on Lipistart until he is 2. He is to stay on his Zinc and on the 4ml of Levocarnitine 3x/day.

The only thing they really brought up was that he should start stringing 2 words together soon (like bye-bye, uh oh, etc). And that hopefully he will start adding more actual words to his vocab, which he will he is still in the normal range according to his pediatrician!

We don't go back until September since he is doing so well. They told us again this visit that everytime they see him, the milder form of the disorder they believe he has. They told us, "He is on the very mild end of the spectrum for VLCADD!" So, we are very happy with this. They also told us we only really have to worry when he gets sick, we are doing everything right with him because he has been so healthy and is doing so incredibly well!

We got our letter to apply for SSI, and now all we are waiting on is to hear back about his labs from his blood draw! They are also supposed to get back to us to see if Insurance will cover a blood test to see where his exact dna mutation is so we can have it to compare to future children. Hopefully they will, but we have to wait and see.

We had a great appointment, and are thrilled with how well he is doing!

15 months!

2010-04-28T15:43:00.000-07:00

Wow, sorry we have been MIA lately! Life has been hectic and busy, but in a good way!

Landon turned 15 months on the 19th, and he is into everything! His stats are:

Height: 33.75 inches (+97%)

Weight: 24.2 lbs (25-50%)

So, my little guy is still a big guy! He is growing by leaps and bounds, he has 25 + sign language signs, he has about 10-20 words as well.

He loves to climb all over everything, but specifically the kitchen table to get to cups or computers or whatever else he can find up there! He is really into reading books, playing with balloons, going on rides in his car, and much much more.

He has learned a few animal sounds and they are so cute when you ask him to say them. He will tell you that a cow says "moo" and that a lion says "roar" (but it sounds like a growl!). He has a book with animal pcitures and he loves to read it over and over and over again, it's so much fun!

My favorite thing that he does now is if you ask him "Who's Landon?" he will point to himself, so stinking cute!

Other things that Landon does: he loves to talk on the phone and says "hi" and "bye", he loves to chase Boomer around the house, loves to go outside and play in the dirt and runa round the back yward and climb on our view fence, he loves to put on all of our shoes and walk around the house in them, he loves to squeal, is a pro at throwing fits, and loves to play the piano at my mom's house.

I will post a pic as soon as I get it off of our camera, which is currently dead...boo.

Little Gym

2010-03-29T21:10:00.000-07:00

We have been going to Little Gym since November and Landon absolutely loves it. I love it to because it gets us out of the hosue for awhile, as well as giving him social interactions with other kids his age. Since he is not in day care, I feel much better that he is able to interact and play with kids his age. So here are some pictures from our Little Gym class!

Landon's Favorite Thing at Little Gym is the parachute. He knows where they keep it and always try to coerce them into getting it out...sometimes it works!

Playing with the balls is so much fun. Landon enjoys picking them up and then throwing them or kicking them!

Practicing our bar skills!

Walking on the beam with Mr. Dave.

The bars have become our favorite place recently.

Taking a breather inside the donut mat.

Playing with Mr. Dave on the big red mat!

Bubbles are the best way to end our class!

Little Model

2010-03-13T20:52:00.000-08:00

I took this picture of Landon the other day after he got his hair cut. We were watching daddy get his haircut, and Landon posed like this leaning on the couch. Scott and I both thought he looked like he was doing a photo spread for GQ!

Geneticist's Appointment

2010-03-06T11:56:00.000-08:00

Landon and I made the Treck up to Phoenix on Tuesday for our Geneticists Appointment. This was only a check-up, and it went really well. I talked to them about his fat intake, cooking oils, development, SSI, his diet, how he's doing, protocol for when he is sick, and medical ID bracelets. I also picked their brain about knowledge of his particular gene mutation, and what made him "mild" and non-cardiac as well as if we have future children what their form of the disorder would be. Unfortunately we did have to get blood work done, the worst part of it all. Hopefully we will get the results back on Monday.

The Nutritionist and I went over his diet, and they said we are doing great with it! Which I am very excited about. They uped his fat intake to 20g a day, so that means we can be more liberal on what we give him...which I am super happy about! We also decided that using Walnut Oil to cook with is the best bet right now. They would prefer MCT Oil, but since it is $50 a bottle, Walnut Oil works great! We also talked about introducing fish into his diet. We haven't actually done this yet, and they were nice enough to send me a chart of the different types of seafood and their fat and calories. So we can just look it up before buying it and know which ones Landon can have all the time, and which ones should be more on a limited basis. I feel great about his diet now, and knowing that we are doing things right! I also asked them about MCT butter (or is it margarine..I forget right now), that my friend Fie told me about! Apparently a pharmaceutical company in Germany makes it and sells it. You have to have a prescription to get it, so they are going to look into it and let me know about it. I hope we cna get some, it would make cooking and other stuff much easier...especially baking.

The Geneticist came after the Nutritionist and checked Landon over. He said he looked great, and was doing great! They want to do an Echo Cardiogram on his heart when we go back in May, just to make sure that they aren't missing anything. They are positive it is fine, they just want to reassure themselves, and us I think.

I talked in great deal to the Geneticist about further children and the New Born screening. I learned a lot of useful and interesting information. If we do have another child that is affected with the disorder, they will ne no worse than Landon. So, that makes us feel a lot better about having more children. They will still only have a 1:4 chance of having the disorder, but since it is the same gene mutation, it will not be any worse than Landon's type of the disorder!

The Geneticist and the Nutritionist is also putting a letter together for us so we can try and apply for SSI. Hopefully Landon can get it, it would help us a lot with his medical expenses and formula. SSI is now finally accepting metabolic conditions for the program..so here is to hoping we can get accepted.

We also decided that in the near future it would probably be a good idea to get Landon a Medical ID Bracelet. We aren't sure what kind yet, but just a simple one that he only has to wear if he is away from us. That way if something were to happen, they would know about his disorder and what to do until he could get to a facility with doctors who know him, or about his disorder.

So, we are now waiting for blood work, and to hear when and where they want us to do the Echo. Our pedi would like it to be done down here with an amazing Pedi Cardioligist that he knows. I will let them iron all that out and tell me when and where to have it done!

Vote For Landon!

2010-03-01T18:22:00.000-08:00

Landon has been chosen as a finalist for the picture of the week for Parent's Magazine!!! This is the first step in making it to the cover of their magazine! If he wins this round then we have a great chance of making it to New York for a Photo shoot, and then the possibility of being on the cover, and he could win $25,000!!! So, please please please please please go and vote for him! Here is the link, and that you in advance!

http://photos.parents.com/category/vote/photo/148377

Couch to 5K

2010-02-24T09:14:00.000-08:00

I have added the Couch to 5K app to my iPhone, and I will be starting it tomorrow. I would start tonight, but Landon has a Little Gym make-up class, so that is plenty of exercise for one day! I believe this could work for me, and I am actually excited to start it. Landon needs to take swimming lessons soon, and that means I will have to sport a swim suit...which could be a very scary sight right about now. So, I figured if I post this, then it will keep me accountable, and I can post my updates and how I am doing. That way there are lots of people that I am accountable too not just myself. WIsh me luck!

Cookbook

2010-02-16T09:06:00.000-08:00

I am putting together a cookbook of low fat and non fat recipes for families like ours with Fatty Acid Oxidation Disorders, and really anyone who wants to follow a heart healthy, low in fat diet. The goal of the cookbook is to help raise awareness for these disorders, and also to help families like ours off set the cost of the medical expenses associated with the disorder. Things such as formula (that insurance won't cover), medicine, testing, doctors appointments, hospital stays, etc.

So, if anyone has any low fat or non-fat recipes that they would like to share...credit will be given at the bottom of each recipe. Please leave me a comment that you have a recipe you want to share, and I would love to get in touch with you and share your recipe in the book. If you have any questions please feel free to ask too, I would love to answer your questions about foods or the disorder in general. Also, if you look back in the blog there is a list of foods that are allowed and can be eaten regularly, and some that are to be eaten sparingly if you need some sort of guidelines...thanks in advance and I hope to get the cook book going soon!

Same Page

2010-02-11T20:25:00.000-08:00

After a small *incident* we now have all of Landon's medical "personel" on the same page, Thank God. We made a trip to the ER on Sunday after Landon ran a 102.5-103 degree fever for a day. To make a long story short we called our Pediatrician's on call service and explained to the lady that answers the phone and then again to the nurse that called us back that Landon had a specific metabolic genetic disorder and we needed to talk to our Pediatician. Well, they told us no! So I called the Geneticist on call and they had us go to the ER to have him looked at, because as I learned your metabolic rate speeds up to at least double when you have a fever...not good for us, unless he is eating twice what he normally does, he happened to only be eating half. So, we spend 4 hours in the waiting room and see the doctor. They find no signs of infection, and Landon decide to feast while in the waiting room...so they sent us home! Great!

Well, we almost make it home and the Geneticist calls my cell phone asking if we had been seen yet. I told her yes, and they released us and we were almost home. Well, apparently they never called them even though we gave them the protocol letter and their phone number. So, she sends us back to the ER for blood work and claiming he will be admitted. So, we get back go through the hell that is a blood draw on a 1 year old. His blood work all comes back normal except for 2 liver enzymes...ugh. Well, apparently they weren't worried about those, so they let us go home especially since his glucose was 78 and his bicarb levels were 27! Both great numbers.

We follow up with our Pedi on Monday, and needless to say he is pissed that the on call service wouldn't let us talk to him or the doctor on call...and that the nurse we talked to put nothiong in her report about Landon's disorder after we told her about. So, being the amazing doctor that he is he set up a meeting with all on call dr's within the service and educated everyone of them on Landon and his disorder and the protocol. He called the Geneticist and made sure that we are all on the same page as what to do when Landon gets sick at night or over the weekend. So, I feel much better...am I disappointed that it took something like this to get everyone on the same page? yes, but relieved that we finally know what to do.

So here it is:

If Landon is vomiting...call
If Landon has diarhea and is refusing food and drink...call
If Landon's glucose level goes below 65...call (I have a glucose meter, that the nurse at the Pedi's ofice was so nice to teach me how to use!)
If Landon has a fever of 102 or higher...call
If Landon has a 101 degree fever and is lethargic...call
If Landon is lethargic and refusing food or fluids...call

Now, not in every instance will he be admitted to the hospital. This protocol goes for when office hours are available too. They want to look at him and see what is going on and make a determination from there. We may just have blood work, and be released like the other night...it just depends.

I am happy to report that Landon is doing great now! Must have been a virus. He had a great time at Little Gym today, and was invited to his first birthday party!

Bit the Bullet

2010-01-28T08:59:00.000-08:00

So, I bit the bullet. I finally signed up for the FOD Support group. I had been resisting this for some reason...I think maybe because if I signed up for it and started participating in it, I finally accepted the fact that my little guy has a life long disorder. Yes, I understand that it has been almost a year since they first told us about it and his NB screening came back abnormal. But I have been on a long, and sometime dark journey since that day. To say that I didn't grieve about it would be an absolute lie. I have checked the website of the FOD Support group many times, but I just was not ready to give in and join. For the 11.5 weeks of agony that we waited to hear if Landon did indeed have VLCADD, I prayed and prayed and prayed to God that this was just all a big mix up. And then when his diagnosis came back positive for the disorder, even though it was the best possible scenario we could get other than a negative result, I was so mad at God and I blamed myself. Understand that they did tell me at least 100 times that there was nothing Scott or I did to cause him to have this disorder, it's genetic...end of story. We have been through so much the last year, myself especially on the journey of grief and acceptance that my little boy has a disorder that is life long. Having come out the other side of the depression and raw anger that followed his diagnosis I am now ready to jump in head first and do anything I can to put the test for this disorder on any and all new born screenings no only in the United States, but in the entire world. I guess you could call it my new life long goal, but I believe that by joining the FOD support group that I can help make this happen. I've probably said it a million times, but it truly is a blessing that we moved to Arizona and that Landon was born there. Had he been born in Texas, he would not have been tested for FAOD's and we would not know of his disorder, and it is very possible that when he was so sick and hospitalized in December he may not have made it. But since we were armed with all of the information and kow how on what to do should something like that occur, I have a wonderful happy and healthy one year old running around. So, I guess what this long drawn out paragraph is supposed to say is that I have finally accepted his diagnosis and I want to do something about it, and help others who will go through the same journey that my family has over the last year, and the years to come!

Landon's 1st Year

2010-01-21T11:14:00.001-08:00

We made a picture montage of Landon's 1st year to celebrate his birthday!

Make an on-line slide show at www.OneTrueMedia.com

Happy 1st Birthday!

2010-01-19T21:02:00.000-08:00

oday is Landon's 1st Birthday! We had a great day playing at home and then going out to dinner with Grandma and Great-Grandma! Landon had a blast today and we are looking forward to another fun year watching him grow and learn! Love you little guy.

Here is Landon's 12 month picture! I will post his 1 year professional pictures tomorrow and his 1 year stats when we get home from his pediatrician appointment.

The following are the lyrics to the song "Godspeed" by the Dixie Chicks. I refound this song when I was looking for songs to put on Landon's 1 year photo montage that I made him (I will post it as soon as I finish it with the pictures from his party and today). The lyrics I think are wonderful and really explain the love a mom has for her son.

Dragon tales and the "water is wide"
Pirate's sail and lost boys fly
Fish bite moonbeams every night
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams

The rocket racer's all tuckered out
Superman's in pajamas on the couch
Goodnight moon, will find the mouse
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams

God bless mommy and match box cars
God bless dad and thanks for the stars
God hears "Amen," wherever we are
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Godspeed
Godspeed
Sweet dreams

1st Birthday Party!

2010-01-18T16:15:00.000-08:00

We had Landon's 1st Birthday Party on Saturday and we had a great time! We had so many friends and family over...there were 8 kids including Landon, and 10 adults including Scott and I! I can't wait for his birthday tomorrow, we are going to take him out to dinner and let him do whatever he wants to do tomorrow!

The shirt I had made for him from Etsy Seller Goldenshop, it came with a hat and bib too...I love how it came out.

Here is a good shot of his hat and bib that go along with his shirt, and his high chair decorations!

Landon's Birthday cake!

Shoveling the cake in as quick as he could! He takes after his mommy and loves cake...smart boy.

Opening presents!

Didn't we just have Christmas?

He got a swing and slide from Scott and I! He loves to play on it, but keeps trying to go up the slide instead of the ladder, ha ha.

Janel and Simon hanging out and having fun!

Little Helper

2010-01-13T09:37:00.000-08:00

I have a new laundry helper theses days! Landon loves to pull the clothes out of the dryer and then take off running with them! If you say "Landon where are you going?" He laughs and says "heh" and then runs faster. It's quite hillarious and a lot of fun! The other day he went to get clothes out of the dryer and they were wet, because I had just changed them over from the washing machine. He grabbed them, made a funny face and then proceeded to fuss at me and then run off! He is such a bogger and I wouldn't change it. Here are some pictures of Landon helping Scott and I with the laundry...these clothes were dry!

Pulling the clothes out of the dryer! Scott was intercepting most of the clothes before Landon ran off with them!

Playing in the dryer is lot's of fun, he really enjoys it. He comes running every time he hears the dryer door open!

Counting Down

2010-01-11T19:42:00.000-08:00

The Birthday countdown has begun in our house. I cannot believe that my little guy will no longer be a baby a weel from tomorrow. He seems so grown up, but then again still my itty bitty guy. His party is this Saturday and we are super excited about it. We will have lots of close friends and family, and then have a small gathering on his birthday and probably go out to dinner. I talked to the Nutritionist and he is allowed to have whatever birthday foods he wants as long as he has all low fat foods the night before, the day of before the party, and then the morning after. I am so excited that he can join in all the good eating and have a "normal" birthday and party. We will definitely be posting pictures so be on the look out for them Saturday evening! We hope everyone has a great week!

1st Haircut!

2009-12-30T16:15:00.000-08:00

Getting Ready to start. He sat on my lap so they covered me in a cape as well. You can see how curious he was as to what was about to happen.

Landon with his cape on...just before we got started. He was starting to get a little unsure about the whole thing, and what exactly it was that we were doing.

He was not a fan of getting his hair cut. He fussed and cried through the whole thing, poor guy. I think a lot of it though was because of the sounds of the scissors snipping. He was fine until she actually started cutting his hair. The other part I think was that I had to help hold his arms down since he was swiping at her scissors when she was cutting...this I think reminded him of being held down for his blood draws and also when he had his IV in the hospital.

After he had calmed down and was sitting in the car. His hair is not that short, we swept it off to the side to see how it looked! They did trim his bangs, around the back of his neck, and around his ears. It was really long in those places, and we wanted his hair to be nice and even for his upcoming 1st Birthday photo shoot!

Merry Christmas!

2009-12-25T14:28:00.000-08:00

We are spending the day with family and great friends, and celebrating Landon's 1st Christmas! We wanted to wish everyone a very Merry Christmas. We had a great Christmas morning, Santa was generous to everyone. We will be having Honey Baked Ham for dinner tonight, yumm. We are counting our blessings today, especially for our little guy and everything we have learned, everyone we have met, and for our great family and friends who have been our rocks through this past year. Hope everyone has a blessed Christmas, and you make many happy memories with your family and friends.

Love,

The Heise's

Landon sitting amongst the present. He wasn't too sure what to think of everything at first!

Sitting on his power wheels car! Zach was off to the side, that's why he is looking in that direction

Playing in his ball pit that Santa brought him. He loves this thing, he has been in it all morning long!

Helping Daddy unwrap presents. He really got into it once he figured it all out!

My favorite picture from this morning! He was having such a great time with everyone.

Zach showing Landon the presents.

My Mom and Boomer, hanging out.

Zach's Big Ticket Item, He got a TV to play his Xbox 360 on!

Landon playing with Mommy & Daddy!

Santa!

2009-12-10T21:00:00.000-08:00

We took Landon to sit on Santa's lap tonight. He did very, very well. We waited in line and talked to him about Santa and telling him what he wanted for Christmas. When it was his turn Landon was great. he sat there and smiled at the camera for 2 pictures. Then he looked over and saw me standing a few feet away, and looked to his other side and saw Scott standing a few feet away, and then looked at Santa and started to get nervous. So, we stepped in and scooped him up, and picked out the picture we liked best. Overall it was a great experience, and I am glad we took him. I really like the Christmas outfit I picked out for him too, it's even cuter on him than it was in the store!

Our 1st Hospital Experience

2009-12-06T08:16:00.000-08:00

Wednesday morning started out perfectly normal. My alarm went off at 5:00 a.m. so I could get up and give Landon his Carnitine on time. I stopped on the way to his room to make him a bottle, like I do every morning. When I went into his room he was standing in his crib whining, which is very unusual. There was also this smell...not like a dirty diaper, it was a completely different smell that I justt couldn't figure out. So I changed his diaper, gave him his medicine, and then we sat in the recliner so he could fall back asleep since he was whining when I went in there. Well, he then started choking. I couldn't figure out why, he wasn't eating anything and had already swallowed his meds. So I sat him up and he stopped choking, and cuddled up with me. But, he just would not sit still...which is very unusual when he is as tired as he was. This was my first hint that something was wrong...other than the whining. So I decided to take him into our bed, maybe he would sleep better in there. Again, he just wouldn't lay still, and then it started. He began throwing up, all over me, all over our bed, and all over himself. When it finally stopped I whiped him off, changed his clothes, and then changed his diaper because he had pooped again. Well, he had major diarhea too. This is when we began to get worried...with his disorder he CAN'T get dehydrated and throwing up and having diarhea at the same time, can get very serious very quickly. So I tried to get him to take some pedialite...he refused. So I just sat him in my lap and covered him with a blanket, and he fell right asleep. After about 1/2 hour I took him back to his room and sat him in the chair with me. He woke up about an hour later, and I changed his diaper again, managed to get him to take some pedialite, which he promptly threw up 10 minutes later. I called his Pedi and they couldn't get us in until noon since they only had 1 doctor working that day. By the time we made our dr's appt Landon had thrown up 5 times, had diarhea 7-8 times, and only took around 8 ounces of fluid, all in 7 hours. I knew we were in trouble and there was a very strong possibility that he would be admitted. Our pedi checked him out, I told him everything that had happened, and he made the decision to admit him to the PICU. I was very worried and really trying not cry, even though our Pedi has seen me cry before when we were first going through everything with Landon. I called Scott, who was at work, and told him to meet us at the Hospital and gave him all the info. The Pedi then decided to check Landon's Blood Sugar..which is the important part, his blood sugar tells us how hydrated he is because his disorder presents and acts as Hypoglycemia. Well his blood sugar was 56, they do not want it below 75!

So we went over to the hospital, and they asked us questions. took all of his info, our info, etc. It took about an hour to an hour and a half to do all of this, and to meet with the doctor. Finally he was able to get his IV, I went with him because he would not let me put him down, or anyone else hold him. He was crying and fussing constantly at this point so I knew he was feeling just awful. To say getting his IV was awful, would be an understatement. They had to velcro him down to this board, to where only his arm that they were putting the IV in, was free and barely free at that. My job was to try and keep him distracted, and they had another really nice lady there to help me. She had all kinds of toys and stuff, but Landon was not having any of it. After getting his IV and drawing blood for labs, we went back to his room and he fell asleep on me. An hour later or so the Doctor came back and told us that his blood sugar was down to 48, which is why he was so fussy...his blood sugar was right about the level where most children can start seizing...can we say scary? So he let us know that we would be there at least until Friday...Great.

That night went pretty well. Around 10:30 p.m. they decided to move us to a room in the Pedi ward, and out of the PICU. The room was much different and not as nice, but at least we had a bathroom and a shower, and we were at the end of the hall so it was mostly quiet. We had great nurses, and a great Doctor. They had to come in every 2 hours and refill his IV fluids. He was on 60 mL of fluid every hour, mostly glucose but with lots of other stuff mixed in it. Thursday morning they came in at 4:30 a.m. to draw blood for that days labs...I had just got to sleep, ugh. He was feeling a bit better though. He downed 2 packages of Graham Crackers, but was still refusing fluids..but we think this was because he was getting so much through his IV that his body knew it didn't need anymore. The nurses and doctors both told us that babies are very instinctual and they will not take fluids if they are already hydrated enough so they were not too worried about it. We just "hung" out in his room, took a few naps, and kept trying to get him to take more food, and maybe some fluids. He took a bottle the whole day, but it was a start. By the end of the day he was definately feeling better, and basically back to his normal self. So, Scott and I were very hopeful we could go home the next day.

Friday morning at 2:00 a.m. they woke us up to draw blood again for his labs for the day. We were able to go back to sleep, thankfully and Landon even slept in the hospital crib for a little bit. So I was able to get a little bit of time sleeping in the "sleeper" chair alone. Let me tell you this chair was impossible to sleep in. My neck and back are still sore. Oh, well. Our favorite nurse came in around 7:30 a.m. to check his IV site. His hand was very swollen and sore, so they had to take his IV out. They kept saying they were going to have to put it back in, in his other hand...this made me shudder, I did not want to put him or I through that again. So, I convinced them to let him try some time off of the IV and see how he did..since he was back to himself and feeling much better. The resident came in and told me there was no way Landon could stay off of it, he would need to drink 5-6 ounces every 2 hours...what baby does this? He also told me there was no way we were going home that day, etc. So I appealed my case to his actual Doctor and she agreed to keep him off of the IV until noon, when they would check his blood sugar again (they had been checking it every 4-6 hours for the last 2 days) at noon. If his sugar was below 80 at noon they would have to put his IV back in, I agreed. Landon ate some vanilla yogurt for breakfast, and had a few ounces out of his bottle! He then had more out of his bottle at 10:30 (normal time for a bottle), and ate some graham crackers! They checked his blood sugar at noon and it was 91!! I was so excited, they then agreed to check it again at 5:00 p.m. while leaving him off of the IV. If his sugar had not gone below 80 at 5:00 p.m. we could go home, woohoo! So Landon then ate a whole thing of applesauce, and some peaches for lunch. He also had another bottle around 3:00 p.m. (again a normal time for a bottle for him). Come 5:00 p.m. they checked his sugars, and it was still 91!! So we were cleared to go home! Scott and I were so excited. About this time nurses from all over the hospital were coming to the Pediatric ward to see the cute little red headed boy, it was so funny. They all said they were told they would know who he was as soon as they saw him..yeah that's right my son was famous all over the hospital! It was great and so Landon..he is such a ham and let them all hold him, and would walk up and down the hall way showing off for them! We finally were released around 6:15 and headed home!

We are doing well at home now. Landon and I are both excited to be sleeping in our beds again. He is back to being himself, and feels great. We are very thankful for our awesome Pedi, his staff, and the Doctor's and Nurses at the hospital. Everyone learned all about his disorder and how to treat him, and I am so thankful they were so willing to learn, and to help us and him as much as they possibly could. They were great about following his diet, and being supportive of us and what we were going through. Hopefully we will not ever have to go through this again. We have to follow up with the Pedi this week, and I am really praying they will not give us a glucose meter, but I think they will so we can check his blood sugars when he is sick and keep on top of them, so we can go to the hospital if we need to without having to make a stop at our Pedi's office first. We can call, and then he can call and get us admitted ASAP. We missed our Christmas Party at the Geneticist's office, but that is o.k. hopefully we can make it next year.

Landon in the hospital, this is when we were in the PICU. The diaper on his hand is covering his IV to try and help to deter him from pulling on it, or pulling it out all together.

Landon, very happy to be in the car on the way home from the hospital. He was so exhausted from the whole experience, as was I.

Geneticist Appointment

2009-12-01T22:11:00.000-08:00

We saw Landon's Geneticist today, and were reminded again how much God has truly blessed us. We had a great appointment. They said that Landon looked perfect, and was doing great. We met with the nutritionist and went over (again) the food guidelines that we were given about a month ago. We talked about his issues with not getting enough Zinc, and how much he was eating...mostly the usual. Then we saw the Geneticist and I'm guessing she was a resident, but I have never met her before and she was learning from him. We went over Landon's stats...he is 9.5 Kilos or about 21 lbs, and 30 inches tall! Everyone kept telling me that I need to push the sippy cup on him more, and it's time to start weening him off of the bottle. I really wish they understood that this is easier said than done in our house. I will get back on track with it though starting tomorrow.

We talked with the Geneticist for a long while going over the things to watch for when he gets sick, his fat levels, how much Zinc he is taking, how much Levo-Carnitine he is on, how he has been doing, etc. I asked him about having more children and he repeated what we already knew that since VLCADD is an autosomal recessive DNA mutation that we have a 1:4 chance of all future children also having this disorder. He said that usually if siblings have the disorder as well that they seem to have the same pattern within the family..meaning that since Landon has a VERY mild case of the disorder, it is very likely that if we have another child with the disorder they too would have a mild case just like him. He also reminded just how blessed we really are that Landon has such a mild case, and that after a few more rounds of blood work (we will get to that in a minute), we may be able to liberalize his diet a little more...since they know more about how his enzyme levels are and how is body is "coping" with the disorder, fat intake, and levo-carnitine. He also told us, once again, that Landon does not present any of the signs or symptoms of the disorder except that his body does not make enough of the amino acid, Levo Carnitine, needed to break down the Very Long Chain fats and move them across the appropriate cell membranes. As well as his muscle enzyme levels are a little bit elevated, but not to any level that we need to be worried about. He said that the level to which they are raised on a normal person could be because they fell on their butt and got a bruise. It is not something that we can ignore, and we need to be mindful of it and watch it, but it is nothing to worry about, and he is not surprised by them and is very happy that this is the only "symptom" of VLCADD that Landon exhibits. They checked his liver to make sure it wasn't enlarged, and of course it isn't and his heart sounds great so all in all he is one happy and healthy little boy. They were very excited that he is already walking and talking and is constant movement! We will be keeping him on his Zinc supplement until further notice, and according to the Geneticist Landon isn't the first one with VLCADD to have had a Zinc deficiency, even though it has never showed up on any of his blood work.

Landon's specific case of VLCADD is that he has the mildest for of the disorder where he has NO heart or liver damage, no heart arithmia, or muscle issues. His form of the disorder deals mainly in the form of hypoglycemia meaning that his blood sugar can not get low (which is why until he was 6 months old we were having to wake him up every 3 hours to feed him), he can't ever fast, and he cannot get dehydrated. If any of these things occur and they are ignored for a period of time (we are talking about many, many hours to days) it can become dangerous to him and he does have the possibility of going into a coma...which we all know will never happen since we are so on top of everything. We were also told that if he seems lathargic, sleeps more than normal, isn't active like he is, vomits for more than 6 hours or refuses food for more than 6 hours then we are to take him to the ER and have him put on a glucose IV until he is better, his appetite returns, or the vomiting stops and he is able to keep foods down again.

Now about the blood work. Let me tell you I hate when we have to have his blood drawn. I don't use the word hate often, but when it comes to having to have Landon's blood drawn eevery definition of the word describes it. To get his blood drawn, they make me sit in one of the chairs with him, that has the little part that comes down in front of you. They of course put the arm thing down, and then make me grab the arm they aren't going to draw blood from, and hold him in a "bear hug" while trying to pin his feet and legs between mine so he cannot squirm. So inevitably this makes him scream bloody murder b/c he does not like to be held down, and because I am convinced that he knows exactly what they are doing. Then they put that rubber band thing around his arm, which scares him even more and makes wiggle and yell louder. Then we get to the actualy blood drawing part...he screams more when they put the needle in his arm, and inevitably because he has himself all worked up it takes forever for them to draw the blood since he is so rigid, and trying to free himself and crying and yelling...and by this time I am trying to sing to him and talk to him to try and clam him down so the blood will flow faster and we can get all of this over with...all the while trying not to cry myself. Let me reiterate I hate having to get his blood drawn. It is a tramatic experience for both of us, but I also understand it is completely necessary so they can monitor his Carnitine Levels, Liver Enzyme Levels, and Muscle Enzyme Levels so we know how well he is doing and if we can liberalize his fat intake at all. Thank God they only take his blood every so often and not every visit.

We rewarded ourselves, and Landon, with Cheesecake Factory for dinner with great friends including Landon's God-Father. Landon had a few *tiny* bites of cheesecake for being so brave today while everyone squeezed him, and checked him out, and drew his blood.

We are headed back to the Geneticist on Friday, but this time for the Metabolic Clinic's Christmas Party. I am looking forward to it, and to meeting other families that are going through something similar. Santa will be there for the kids, so I hope Landon will sit onhis lap for a picture, and we are taking a toy donation for Toys for Tots, as well as making something to share. It should be fun and I promise to take pics and post them up once we get back.

Happy Birthday Grandpa!

2009-11-30T21:44:00.000-08:00

Today is Landon's Grandpa's (my dad) birthday! We wanted to wish him a very happy birthday, we hope he had a great day and was able to relax and enjoy himself today. I'll leave out the part about how old he is ;o) We can't wait to see him in January when we go visit to celebrate Landon's 1st Birthday as well!

Landon also recieved his H1N1 booster today, I am very relieved because he is now 100% covered against the virus. I was worried because they said that with his disorder he was conswidered to be in the high risk category and he would have to be hospitalized if he had contracted the virus. But, we are all clear and very thankful to our Pedi! Landon is a bit cranky and sore from the shot, but he is also cutting his 2nd front top tooth so that plays a big role in it too. Here's to hoping it breaks through tonight and brings him some relief.

We are headed to Phoenix tomorrow to meet with the Geneticist and the Metabolic Nutritionist. It should be a very interesting and informative appointment. I will update you on everything once we get back. We will also be meeting up with our good friend Catina and her baby, JT. Landon's Godfather, Gary, will be going to dinner with us as well. We are going to eat at Cheesecake Factory...I cannot tell you how excited I am about this, I really miss Cheesecake Factory. Especially since our house in Frisco was 7 minutes from there, yumm. Pray for a good appointment and no blood work for Landon!

Turkey Day!

2009-11-27T19:25:00.000-08:00

Yesterday was Landon's 1st Thanksgiving, and he had a blast! We had dinner at our house with Scott'sgrandma and great friends Amanda (and her kids Aidan & Iam), and Janel (and her son Simon)! We had a blast and ate lots and lots of really yummy food, Landon had his first taste of many new favorites, some he can have a lot and others that will be on a more occasional basis like home made macaroni and cheese.
We truly learned fromt he last 10+ months that we are really blessed and we have a lot to be thankful for. We are most thankful that even though Landon does have VLCADD, he has the mildest version and it barely effects his day-to-day life. We are thankful and blessed to have our wonderful family and friends both on-line and IRL. We really hope that everyone had a wonderful holiday, and you counted all of your blessings!

I wore myself out today shopping. Amanda and I went to Toys R Us at midnight! We were able to get a lot of what we wanted, but not all of it, which is great! We continues on from there and only stopped to take a 3 hour nap in between. it was crazy, but a lot of fun and we got some really great deals!

Here are some pics from our turkey day celebration:

Landon & Mommy on his 1st Thanksgiving!

My sweet guy playing in his toy box.

Playing with Simon, who also thinks the toy box is fun to play in. Who needs toys, just buy them plastic rubbermaid containers!

Simon & Landon coming up with a plan, in our pantry.

I am very Thankful for my little guy, and that he had such a great first Thanksgiving.

10 months old!

2009-11-19T20:19:00.000-08:00

Landon is doing so many new things now, it is really hard to keep up with them all! He is growing by leaps and bounds constantly, it really is so amazing to watch everything he learns and figures out each day. He's in to everything and curious about everything. His favorite new thing to do is to type on the computer, or to take your mouse and carry it off to random places in the house! He is also walking so much now! He has walked as far as across the room, and he can now turn and walk in a different direction! He loves to babble and has picked up a few new words now. He can say "mama", "dada", "up", he really tries to say "more" and "book"! it won't be long before he will be talking constantly!

I took Landon to Little Gym today to see if it would be something he would enjoy. Since he is constantly moving and getting into everything I figured we should have an outlet in a super fun and safe enviroment with other children around his age. He really had a blast, he was walking alla round, crawling on to and into every thing! They even had exercises that we did together, which I really liked because Lord know I need it too. We are taking Scott to their open house tomorrow to show him all the fun we had, and the neat stuff they have for him to learn, and then we are going to sign him up. I am super excited that he is going to be in Mommy & Me gymnastics. The one thing i have always wanted is for my children to try gymnastics, since I loved it so much. He doesn't have to do it forever, I just want him to be able to experience it. I am also super glad that we are going because it gets us out of the hosue 2 days a week, teaches him to socialize with other children, and I can socialize with other moms, how fun!

Anyways, enjoy some pictures in our adventure of trying to take the monthly picture for the blog and our baby book!

It took a lot of tries to take our 10 month picture. Landon is constant movement these days!

Some distractions were needed. Yes, taping the sign to the couch was absolutely neccessary. You can't tell in the picture how crinkled it is from him grabbing it and playing with it..it was really quite funny.

This was the only shot I could get with his whole face showing. Thank Goodness for Pack-n-Plays and big brother's distracting him.

Prematurity Awareness Day

2009-11-17T13:01:00.000-08:00

Today is Preemie Awareness Day. This is close to our hearts, not because of Landon but because of me. I was a preemie and spent a few weeks in the NICU and the hospital before coming home in 1983. Ihad Jaundice pretty bad and Asthma as well. I can only imagine what my parents went through. With everything that we have been through with Landon he has never been in the hospital, and I just cannot imagine what my parents and all the preemie moms out there must go through. Please hug and love your babies today and thank God for them. Please say a prayer today for all of the preemies out there.

We are going to be Famous!

2009-11-11T13:16:00.000-08:00

Well Kind of. I left a testimonial for our Ergo Baby Carrier that we absolutely love and use all the time on facebook since we are fans of them! After going through who knows how many carriers, a good friend of mine suggested that we try the Ergo. I am so glad that she told us about it, it has been the best baby carrier ever. I tell every mom and mom-to-be I can about the Ergo. Our testimonial will not be up for about a week or two, but I will let you know as soon as they post it! I am super excited about it, and really glad that they think we are cool enough to use our story! In the mean time here is there website if you want to check them out:
http://www.ergobaby.com/

Also, if you get the chance, go check out my friend Megan's food blog. She is giving away a sample pack of this super yummy popcorn. I hope I win it, no offense to all of you...ha ha :o)

http://megansmunchies.com/the-return-of-the-decadent-popcorn-giveaway/

Foods

2009-11-06T08:40:00.000-08:00

Now that Landon would rather eat solid foods off our plates, than the baby food puree's that I make or in the jars, our metabolic Nutritionist gave us a list of "acceptable" foods for Landon to eat. Since he has such a mild case of his disorder, he is allowed more fat in his diet and we are allowed to be more lienent around the holidays, birthdays, etc. This list is for normal everyday foods, that he can eat without us having to worry about the fat contents of them. I must say it is nice to have a list of "go to" foods that we know we can feed him without having to find nutrition labels to calculate the fat contents and whether or not the foods are considered low fat enough for Landon to be able to eat.

We also learned how to calculate whether a food is low fat enough for Landon to be able to eat. It's really a much simpler "equation" than I thought it would be, I was thinking "oh, no am I going to be able to do this and learn this so that when I am in the grocery store I will be able to look at the nutrition label and know if he can have that particular food item." Here is our equation:

If there are 50 calories or less per gram of fat, then it is considered low fat enough for Landon to eat. For example:

Item A has 100 calories and 2 grams of fat...then Landon can eat it.
Item B has 175 calroies, and 4 grams of fat...then Landon cannot eat it.

Item B would have to have 200 calories with 4 grams of fat, for landon to be able to eat it. Although if it only had 3.5 grams of fat, for the 175 calories...then Landon could have it. Hopefully this all makes sense.

Now when it comes to the Holidays or going to Birthday parties when he is older Landon is able to eat the food, but in smaller portions. The few days before the Holiday or party Landon will have only non-fat foods from his list or ones we know that he can have from using the equation above. The day after the event also he will have only low fat foods, and then he can go back to his "normal" diet.

It is important to note, that although Landon's body has trouble breaking down Very-Long Chain fats, his body still needs some of those types of fats. The VLC fats are the ones that aide in brain growth, body development, etc. they are important for him to have, but only in limited and controlled quantities. He is also on Levo-Carnitine, which is the amino acid the naturally occurs in our body that helps to move the fats across the cell membranes to be broken down. We are lucky that his body does produce some of this amino acid/enzyme, just not enough.

Now that you have had a full lesson on fat, ha ha, here is the list of foods I talked about when I started this post.

Low Fat Food Choices:

Food Groups & Recommend Limits:

Meat, Poultry, Fish:

White Meat Only

Reduced fat luncheon meats

No full fat hot dogs or bologna

No fried foods

Other Protein Foods:

Beans and peas, egg whites, egg substitutes

Egg yolks: Occasionly

Avoid: adding fat or lard during cooking

Soy and “meat alternatives”

Peanut Butter Use in moderation

Avoid adding oil during preparation

Milk Products:

Skim or 1% milk only

No 2%, or whole milk

Low fat yogurt, cottage cheese, sour cream, and cheese only

No full fat dairy products

Breads and cereals:

Whole grain bread products including cereals, pasta, and pretzels are best

Avoid: trans fats, hydrogenated oils, and fried foods

Fruits and vegetables:

All are excellent choices

Avoid: adding fat (butter, ranch) and fried foods (potato chips, etc)

Desserts:

Fresh fruit, fruit ices, sherbet, frozen low-fat yogurt, gelatin, and angel food cake

Limit: fried foods and full fat desserts

Chatter Box

2009-11-03T08:01:00.000-08:00

We now have a chatterbox on our hands! Landon said his first word yesterday. He crawled up to me and pulled up and looked right at me and said "mama" on several different occasions through out the day! I am so glad that he has started talking, and I must say I am biased and super excited he said "mama" first. Scott and I cannot wait to see what words are to come next. Logically and developmentally wise it will more than likely be "dada" followed by "baba" which is what we call his bottle, so he will be able to easily say it when the time comes.

Landon is also signing a lot more now. He signs, more, milk, and all done. We are well on our way to great communication. Having a mommy with a degree in Speech Pathology doesn't hurt him either, ha ha.

We also had our first run in with Poison Control yesterday. I about had a heart attack when I found him witha bottle of white out, and it was all around his mouth, on his hands, feet, the dog, and the tile floor. I called Poison Control and luckily they said that babies usually tolerate white out very well, and he didn't ingest a whole lot of it since most of the bottle was still full. We had to watch him closely over night because they said it cold cause stomach aches, breathing difficulties, and vomiting (super dangerous for Landon w/ his disorder). Luckily he had none of this, but he definately gave his Mommy a major panic for a few minutes. We have to make sure to keep Zach's door shut from now on, because that is where he found the white out. We are looking to have a bit of a calmer rest of the week.

Trick-Or-Treat

2009-11-01T22:10:00.000-08:00

We had a great Halloween at our house, and we hope that everyone else did too. We went down to the pumpkin patch in Wilcox, AZ. We went on a hayride out to the spot where we could pick our pumpkins! Landon enjoyed riding in the wheel barrow thing that you could use to cart your pumpkins that you picked back to the hayride. We picked out 2 pumpkins to replace the ones we had carved for our fall decorations we will keep up through Thanksgiving (pictures to come). We had a great time, and since we went later in the season, it wasn't very crowded at all!

When we got home we went down to our neighbors house, where they had a potluck dinner for our cul-de-sac. Landon was dressed up in his tigger costume, and had a ball as did the rest of us. We hung out there until we took Landon trick-or-treating. For only going to a the houses on our street, he made out like a bandit! We decided not to go to the 3rd Halloween party we were invited too. Landon was tired and a little fussy, his top teeth are just about to break through hus gums too..poor guy, so we hung out at home and handed out candy. You will never believe what we found when we got home. We had left a bowl of candy out since we were not home to pass it out. Well someone took the entire bowl...fine, that's the risk you run when you leave it out like that. But, they took our BOWL with them...really who takes the bowl? It was in our front yard this morning, so they either threw it in the neighbors yard, or their parents made them bring it back. Who knows, but I am certainly glad to have my mixing bowl back.

I will leave you with some pictures from our weekend!

Landon's professional picture in his "Baby's 1st Halloween" Outift.

Landon's professional Picture in his Tigger Costume. He was so happy to be Tigger.

Landon & Mommy on the hayride out to the pumpkins.

Landon & Mommy in the Pumpkin Patch!

Landon & Daddy in the pumpkin patch.

Landon playing "George Washington" in the wheel barrow with Zach.

Landon & Mommy heading out to trick-or-treat.

Tigger and his trick-or-treating ride.

Landon's Loot.

Some Blog Fun

2009-10-29T11:54:00.000-07:00

Rules

1. You Can Only Use One Word.

2. Pass this along to 6 of your favorite bloggers.

3. Alert them that you have given them this award.

4. Have Fun!

The Fun Part:

1. Where is your cell phone? table

2. Your hair? shorter

3. Your mother? amazing

4. Your father? Determined

5. Your favorite food? Cake

6. Your dream last night? none

7. Your favorite drink? Dr. Pepper

8. Your dream/goal? amazing mom

9. What room are you in? living room

10. Your hobby? traveling

11. Your fear? critters

12. Where do you want to be in 6 years? Colorado

13. Where were you last night? Pictures

14. Something that you aren’t? Fearless

15. Muffins? Blueberry

16. Wish list item? Equinox

17. Where did you grow up? Dallas

18. Last thing you did? LP-Bed

19. What are you wearing? PJs

20. Your TV? huge

21. Your pets? Boomer

22. Friends? Amazing

23. Your life? Busy

24. Your mood? Tired/Sleepy

25. Missing someone? Family

26. Vehicle? Jetta

27. Something you’re not wearing? Shoes

28. Your favorite store? Coldwater Creek/Gymboree

29. Your favorite color? Purple

30. When was the last time you laughed? Tonight

31. Last time you cried? Sunday

32. Your best friend? Landon

33. One place that I go to over and over? Pediatrician

34. One person who emails me regularly? Scott

35. Favorite place to eat? Randy White's BBQ

I tag:
Molly
Melissa
Sara
Kelly
Andrea
Megan

Doing the Two Step!

2009-10-28T07:29:00.000-07:00

Landon took his first 2 steps tonight!! We were at his Great-Grandma's house after having his Halloween pictures taken professionally. He was playing and playing like normal, reaching from the coffee table to the couch, etc. Well I had Scott move the coffee table back a little bit to try and encourage him to maybe think about taking some steps...well about 30 minutes later, he lets go of the coffee table (he's been free standing for a few weeks now), and is free standing for about a minute. Well, then he looks at me and takes 2 steps to reach me!!! It was so neat to watch, and extra special because he had 5 people watching him! His Grandma (Scott's mom), Great-Grandma, Brother (Zach), Scott and I were all watching him, it was quite possibly the neatest thing I have seen :o) The cutest part I think of though was after he took the steps we were all saying "yay!!" and he started clapping and was so proud of himself! It won't be long before we are running after him :o)

9 months old!

2009-10-19T08:57:00.000-07:00

My little guy is 9 months old today! I cannot believe that time is flying by so fast, and he is getting to be so big! His well check is not until the 28th so I will update will all of his stats then. He is doing very well and is getting to the point where he prefers table food, especially what Mommy & Daddy are eating, to baby food. He will still eat baby food but we have definately moved on to stage 3 foods and are quickly fasing those out! We go back to the Geneticists and the Metabolic Nutrisionist sometime soon. We had to cancel our original appointment because we had to come to Texas for some family things. I hope we get to meet with them soon so we can learn how to calculate fat % and what that means for his diet and what he can and can't eat depending on the fat %. It will definately be a learning curve, but I am looking forward to it because it means the whole family will be eating much healthier! Landon has accomplished a lot over the last month! He can now do the following:

~Pulling up on everything

~Standing for 1-2 minutes at a time w/o holding on to everything

~He is so close to walking, we expect it to happen any day!

~He can sign "more" and know the signs receptively for: no and finished

~ He is into everything!

~He can climb the stairs...and fast too! Don't worry we have gates up to stop him!

~He can clap, blow raspberries (aka stick his tongue out and spit), he takes his hands while he is babbling and puts them over his mouth and takes them off again to make (bababa) noise...kind of like the noise we made for "indians" as a child.

~Loves to take the dogs toys and them taunt them with it...it's hillarious because they know they cannot take it from him.

~Loves to read the Elmo book "So, Big!"

~He loves to stand up on anything!

~Still loves to jump, especially while holding on to MaMa and standing on the couch...it's super bouncy.

~He babbles all the time...of course I am trying to teach him MaMa first :o)

Information on VLCAD

2009-10-19T08:56:00.000-07:00

My Note on this: As it states below this is general info on all types of the disorder. I wanted to let you know how it effects other children and how lucky we really are that Landon has a very, very, mild case of this disorder. Landon does not have any of the heart disorders they will talk about, or for the most part any of the side effects or other issues covered in this reading. As I have stated before in the blog, Landon has the form of the disorder that presents like Hypoglycemia. He does have to be hospitalized if he gets really sick with a glucose IV, and he does take the LevoCarnitine they mention below to help him break down fats in his body. Landon however has the form of the disorder that he has the Carnitine enzyme, his body just does not produce enough of it. If you have any questions specific to Landon's case or not, feel free to ask me I would love to tell you more about our expereinces or the disorder in general.

Please note: This is a general description and information on the disorder. There are mild, moderate and severe forms of this disorder. In our case we are very lucky that Landon has an extremely mild case and his life will not be as effected as some of the stuff you will read below. Landon also has the "hypoglycemia" form of the disorder. He does not have any of the heart defects, liver, muscle, and kidney issues that go along with the more sever forms of the disorder. With Landon we just have to make sure that he does not get dehydrated, he is not allowed to fast at all, and if he does get the stomach flu or viruses like that he has to go into the hospital and have a glucose IV until he can keep food down for a number of hours. Landon's form of the disorder is not fatal unless he does get severly dehydrated and then he can slip into a coma, but it would take a lot for that to happen to him. We count our blessing everyday that he is so mild. With that being said, googling and reading all of this information when we were first facing the disorder scared us to death. Which is why I have started this foundation and blog to show other parents going through the same thing, that there is hope and these children can live normal, happy lives with just a few adjustment.

Without further rambling here is the article we were given by our Medabolic Nutritionist that adequately and fairly explains VLCAD and basic info on Fatty Acid Oxidation Disorders.

Fatty Acid Oxidation Disorders

Disorder Name: Very long chain acyl-CoA dehydrogenase

Acronym: VLCADD

•What is VLCADD?

•What causes VLCADD?

•If VLCADD is not treated, what problems occur?

•What is the treatment for VLCADD?

•What happens when VLCADD is treated?

•What causes the VLCAD enzyme to be absent or not working correctly?

•How is VLCADD inherited?

•Is genetic testing available?

•What other testing is available?

•Can you test during pregnancy?

•Can other members of the family have VLCADD or be carriers?

•Can other family members be tested?

•How many people have VLCADD?

•Does VLCADD happen more often in a certain ethnic group?

•Does VLCADD go by any other names?

•Where can I find more information?

This fact sheet has general information about VLCADD. Every child is different and some of this information may not apply to your child specifically. Certain treatments may be recommended for some children but not others. Children with VLCADD should be followed by a metabolic doctor in addition to their primary doctor.

What is VLCADD?

VLCADD stands for "very long chain acyl-CoA dehydrogenase deficiency". It is one type of fatty acid oxidation disorder. People with VLCADD have problems breaking down certain types of fat into energy for the body.

Fatty Acid Oxidation Disorders:

Fatty acid oxidation disorders (FAODs) are a group of rare inherited conditions. They are caused by enzymes that do not work properly.

A number of enzymes are needed to break down fats in the body (a process called fatty acid oxidation). Problems with any of these enzymes can cause a fatty acid oxidation disorder. People with FAODs cannot properly break down fat from either the food they eat or from fat stored in their bodies.

The symptoms and treatment vary between different FAODs. They can also vary from person to person with the same FAOD. See the fact sheets for each specific FAOD.

FAODs are inherited in an autosomal recessive manner and affect both males and females.

What causes VLCADD?

VLCADD occurs when an enzyme, called "very long chain acyl-CoA dehydrogenase" (VLCAD) is either missing or not working properly. This enzyme's job is to break down certain fats from the food we eat into energy. It also breaks down fat already stored in the body.

Energy from fat keeps us going whenever our bodies run low of their main source of energy, a type of sugar called glucose. Our bodies rely on fat when we don’t eat for a stretch of time – like when we miss a meal or when we sleep.

When the VLCADD enzyme is missing or not working, the body cannot break down fat for energy and must rely solely on glucose. Although glucose is a good source of energy, there is a limited amount available. Once the glucose has been used up, the body tries to use fat without success. This leads to low blood sugar, called hypoglycemia, and to the build up of harmful substances in the blood.

If VLCADD is not treated, what problems occur?

VLCADD is variable and can cause mild effects in some people and more serious health problems in others. Symptoms may start in infancy or not until adulthood. There are three forms of VLCADD: “Early”, “Childhood” and “Adult”.

It is common for babies and children with the early and childhood types of VLCADD to have episodes of illness called metabolic crises. Some of the first symptoms of a metabolic crisis are:

•extreme sleepiness

•behavior changes

•irritable mood

•poor appetite

Some of these other symptoms may also follow:

•fever

•nausea

•diarrhea

•vomiting

•hypoglycemia

If a metabolic crisis is not treated, a child with VLCADD can develop:

•breathing problems

•seizures•coma, sometimes leading to death

Periods of hypoglycemia can happen with or without the other symptoms. Hypoglycemia can cause a child to feel weak, shaky or dizzy with clammy, cold skin. If not treated, it can lead to coma, and possibly death.

Either hypoglycemia or a full metabolic crisis can occur:

•after going too long without food

•during illness or infection

•after heavy exercise

Symptoms of early and childhood VLCADD often happen after a period of having nothing to eat for more than a few hours. Symptoms are also more likely when a child with VLCADD gets sick or has an infection.

Early VLCADD

About half of babies diagnosed with VLCADD have the “early” type. They usually start to show effects between birth and 4 months. In addition to metabolic crises, babies can also have:

•enlarged heart, irregular heartbeat and other heart problems

•enlarged liver and other liver problems

•muscle problems

If not treated, babies with early VLCADD usually die young.

Childhood VLCADD

About one third of people with VLCADD have the childhood type. They usually show symptoms in late infancy or early childhood. Episodes of hypoglycemia or full metabolic crisis happen during illness or after long periods of not eating. Other effects can include:

•enlarged liver

•other liver problems

•muscle weakness, especially after exercise

Heart problems are usually not seen in childhood VLCADD.

Some children with VLCADD have never had symptoms and are only found to be affected after a brother or sister has been diagnosed.

Adult VLCADD

About one fifth of people with VLCADD have the adult type. They usually show symptoms starting in the teen years or in adulthood. Periods of muscle weakness are common. Breakdown of muscle fibers can occur. This usually happens during heavy exercise or after going without food for a long period of time.

Signs of muscle breakdown are:

•muscle aches

•weakness

•cramps

•reddish-brown color to the urine.

Adults with muscle symptoms who do not get treatment can develop kidney failure.

People with the adult form of VLCADD usually do not have heart problems, hypoglycemia or metabolic crises.

What is the treatment for VLCADD?

Your baby's primary doctor will work with a metabolic doctor to care for your child. Your doctor may also suggest that you meet with a dietician familiar with VLCADD.

Certain treatments may be advised for some children but not others. When necessary, treatment is usually needed throughout life. The following are treatments often recommended for children with VLCADD:

1. Avoid going a long time without food

Infants and young children with VLCADD need to eat frequently to prevent a metabolic crisis. Your metabolic doctor will tell you how often your child needs to be fed. In general, it is often suggested that infants be fed every four to six hours. Some babies need to eat even more frequently than this. It is important that infants be fed during the night. They may need to be woken up to eat if they do not wake up on their own. Your metabolic doctor and dietician will give you an appropriate feeding plan for your infant. Your doctor will also give you a ‘sick day’ plan tailored to your child’s needs for you to follow during illnesses or other times when your child will not eat.

Your metabolic doctor will continue to advise you on how often your child should eat as he or she gets older. When they are well, many teens and adults with VLCADD can go without food for up to 12 hours without problems. The other treatments usually need to be continued throughout life.

2. Diet

Sometimes a low fat, high carbohydrate diet is recommended. food plan is recommended. Carbohydrates give the body may types of sugar that can be used as energy. In fact, for children needing this treatment, most food in the diet should be carbohydrates (bread, pasta, fruit, etc.) and protein (lean meat and low-fat dairy foods). Any diet changes should be made under the guidance of an experienced dietician.

People with VLCADD cannot use certain building blocks of fat called “long chain fatty acids”. Your dietician can help create a food plan low in these fats. Much of the rest of fat in the diet may be in the form of medium chain fatty acids.

Ask your doctor whether your child needs to have any changes in his or her diet.

3. MCT oil and L-carnitine

Medium Chain Triglyceride oil (MCT oil) is often used as part of the food plan for people with VLCADD. This special oil has medium chain fatty acids that can be used in small amounts for energy. Your metabolic doctor or dietician can guide you in how to use this supplement. You will need to get a prescription from your doctor to get MCT oil.

Some children may be helped by taking L-carnitine. This is a safe and natural substance that helps the body make energy. It also helps the body get rid of harmful wastes. Your doctor will decide whether your child needs L-carnitine. Unless you are advised otherwise, use only L-carnitine prescribed by your doctor.

Do not use any medication or supplement without checking with your doctor.

4. Call your doctor at the start of any illness

Always call your health care provider when your child has any of the following:

•poor appetite

•low energy or excessive sleepiness

•vomiting

•diarrhea

•an infection

•a fever

•persistent muscle pain, weakness, or reddish-brown color to the urine

Children with VLCADD need to eat extra starchy food and drink more fluids during any illness - even if they may not feel hungry – or they could develop hypoglycemia or a metabolic crisis. When they become sick, children with VLCADD often need to be treated in the hospital to prevent serious health problems.

Ask your metabolic doctor if you should carry a special travel letter with medical instructions for your child’s care.

5. Avoid prolonged exercise or exertion.

Long periods of exercise can also trigger symptoms. Problems occurring during or after exercise can include:

•muscle aches

•weakness

•cramps

•reddish-brown color to the urine.

If muscle symptoms happen, prompt treatment is needed to prevent kidney damage. Children and adults with muscle symptoms should:

•drink fluids right away

•eat something starchy or sugary

•get to a hospital for treatment

To help prevent muscle symptoms:

•avoid prolonged or heavy exercise

•keep the body warm

•eat carbohydrates before and during periods of moderate exercise

What happens when VLCADD is treated?

With prompt and careful treatment, people with the childhood and adult forms of VLCADD can often live healthy lives with typical growth and development. Before diagnosis through newborn screening was available, the early form of VLCADD was fatal. Now, with immediate and ongoing treatment, many infants with VLCADD are surviving.

What causes the VLCAD enzyme to be absent or not working correctly?

Genes tell the body to make various enzymes. People with VLCADD have a pair of genes that do not work correctly. Because of the changes in this pair of genes, the VLCAD enzyme either does not work properly or is not made at all.

How is VLCADD inherited?

VLCADD is inherited in an autosomal recessive manner. It affects both boys and girls equally.

Everyone has a pair of genes that make the VLCAD enzyme. In children with VLCADD, neither of these genes works correctly. These children inherit one non-working gene for the condition from each parent.

Parents of children with VLCADD are rarely affected with the disorder. Instead, each parent has a single non-working gene for VLCADD. They are called carriers. Carriers do not have VLCADD because the other gene of this pair is working correctly.

When both parents are carriers, there is a 25% chance in each pregnancy for the child to have VLCADD. There is a 50% chance for the child to be a carrier, just like the parents. And, there is a 25% chance for the child to have two working genes.

Genetic counseling is available to families who have children with VLCADD. Genetic counselors can answer your questions about how VLCADD is inherited, options during future pregnancies, and how to test other family members. Ask your doctor about a referral to a genetic counselor.

Is there genetic testing available?

Genetic testing for VLCADD can be done on a blood sample. Genetic testing, also called DNA testing, looks for changes in the pair of genes that causes VLCADD. Talk with your metabolic doctor or genetic counselor about whether DNA testing for VLCADD would be helpful to you.

DNA testing is usually not necessary to diagnose your child. It can be helpful for carrier testing or prenatal diagnosis, discussed below.

What other testing is available?

VLCADD can be confirmed by a special test called a "fatty acid oxidation probe"using a skin sample. Talk to your doctor or genetic counselor if you have questions about testing for VLCADD.

Can you test during pregnancy?

Yes, it is possible to test for VLCADD during pregnancy. The sample needed for this test is obtained by either CVS or amniocentesis.

Parents may either choose to have testing during pregnancy or wait until birth to have the baby tested. A genetic counselor can talk to you about your choices and answer other questions you may have about prenatal testing or testing your baby after birth.

Can other members of the family have VLCADD or be carriers?

Having VLCADD

The brothers and sisters of a baby with VLCADD have a chance of being affected, even if they haven’t had symptoms. Finding out whether other children in the family have VLCADD is important because early treatment may prevent serious health problems. Talk to your doctor or genetic counselor about testing your other children for VLCADD.

VLCADD Carriers

Brothers and sisters who do not have VLCADD still have a chance to be carriers like their parents. Except in special cases, carrier testing should only be done in people over 18 years of age.

Each of the parents’ brothers and sisters has a 50% chance to be a VLCADD carrier. It is important for other family members to be told that they could be carriers. There is a small chance they are also at risk to have children with VLCADD.

Some states do not provide newborn screening for VLCADD. However, expanded newborn screening through private labs is available for babies born in states that do not screen for this condition. To learn more about expanded newborn screening, see How to obtain MS/MS.

When both parents are carriers, newborn screening results are not sufficient to rule out VLCADD in a newborn baby. In this case, special diagnostic testing should be done in addition to newborn screening.

During pregnancy, women carrying fetuses with VLCADD may be at increased risk to develop serious medical problems. A small number of women are known to have developed:

•excessive vomiting

•abdominal pain

•high blood pressure

•jaundice

•abnormal fat storage in the liver

•severe bleeding

All women with a family history of VLCADD should share this information with their obstetricians and other health care providers before and during any future pregnancies. Knowing about these risks allows early treatment.

Can other family members be tested?

Diagnostic testing

Brothers and sisters of a child with VLCADD can have special testing to check for this disorder. Ask you metabolic doctor whether your other children should be tested for VLCADD.

Carrier testing

Carrier testing may be available to other family members. Your metabolic doctor or genetic counselor can advise you about carrier testing. .

How many people have VLCADD?

VLCADD is thought to be a rare disorder. The actual incidence is unknown.

Does VLCADD happen more frequently in a certain ethnic group?

No, VLCADD does not happen more often in any specific race, ethnic group, geographical area or country.

Does VLCADD go by any other names?

VLCADD is sometimes also called:

•VLCAD deficiency

•ACADVL deficiency

Source: http://www.newbornscreening.info/Parents/fattyaciddisorders/VLCADD.html

Welcome!

2009-10-14T16:06:00.000-07:00

Thanks for stopping by our new blog! I have set up this blog as part of a foundation I am starting called Landon's Place. I hope to provide information on VLCAD (Very Long Chain Acyl Dehydrogenaise Disorder) and other Fatty Acid Oxidation Disorders, show that it is possible for children and families who have children with these disorders can live normal lives through my son, Landon and his adventures. I am also aiming to raise awareness of these disorders so other families will not be blind sided with the diagnosis like we were. My goal is for this foundation to be nationally recognized and well known, so there is awareness and knowledge of FAO disorders among everyone. I want to help fund research, provide scholarships for students to go into the Metabolic Genetics field, and for doctor every where to have knowledge and understanding of FAO (Fatty Acid Oxidation) Disorders. I also want every state to include FAO disorders in their newborn screenings...It could save so many lives and increase the quality lives in many others. I hope you will join in our cause and help make our foundation and our goals a success. I promise this blog will not be all medical information...it will hopefully also include stories about Landon and other children who are living with this disorder daily and show their successes, joys in their daily lives, and adventures along the way. If you are a family with a child who has VLCAD or any FAO please contact me so I can share your story.

Dallas Arboretum

2009-10-13T17:47:00.000-07:00

My mom and I took Landon to visit "Autumn at the Dallas Arboretum." We decided to go on a whim, since we were already here and it was a relatively nice day outside. We had a blast walking around and looking at all of the flowers and fall decorations. Landon also really enjoyed playing in the pumpkin patch! I am really glad we were able to go, and Landon came out with a super neat Bib that has the State flag of Texas on it! I just couldn't resist getting it for him, since after all his mom is a Texan!

Here are some pictures from our trip to the Arboretum!

Landon playing in the pumpkins at the Pumpkin patch!

Landon and Mommy with a Landon sized Pumpkin!

Landon and Mommy in standing in the Pumpkin House.

One of my favorites, he looks like being in the Pumpkin Patch is serious business.

I Love that he is smiling and so happy to be playing in the pumpkins!

Thanks Grandma!

2009-10-06T19:44:00.000-07:00

My mom came to visit us here in Arizona, and while she was here she taught landon how to stick his tongue out (kinda) and spit. So what is Landon's new favorite thing to do...yeup that's right, spit, it's really cute until he does it in your face, or in when you are riding the bus at the Grand Canyon and he is spitting at everyone around you. Thankfully they all thought it was cute too.

Other than spitting we are doing well. We tried a new formula out that had a corn carbohydrate in it, not corn syrup but something different. Well Landon now has a rash all over his chest, upper arms, upper legs, and his neck. So I am going to take him to the Pedi tomorrow just to make sure it is only an allergy rash and not something more. This rash looks different than the original allergy rash that we had way back when.

Unfortunately Landon and I will be heading back to Dallas in the next week or so. My Aunt (dad's sister) is quickly losing her battle with rheumatiod arthritis. She is in Renal Failure and will fall asleep, go into a coma, and that will be it. I am really sad about it, and really wish she would have been able to meet Landon, but he wasn't allowed to visit her in the hospital due to his disorder and she wasn't released to hospice at home until after we had already left town. Please put her and our entire family in your prayers. Also please pray for safe travel for Landon and I flying to Dallas and then the majority of our family driving to and fromt he services when the do occur.

Still Kickin'

2009-09-16T14:03:00.000-07:00

We are still here, just been very very busy. I promise to be a better blogger from now on. Our lives have just turned a little bit hectic. I can tell you that we are super excited that it is basically fall! It is my favorite time of the year! Both mine and Scott's birthday's are in the fall (his is next week and mine is 7 days later), and our 2nd Anniversary was on the 8th! We didn't do anything extravagant we just went out to dinner at P.F. Changs...my favorite. Scott got me gorgeous diamon studs, and I got him a Chicago bears grill cover!! So all were happy, and Landon had a great time playing with the chop sticks at dinner!

That's about all we have going on. More to come soon I promise.

New Accomplishments

2009-09-03T11:05:00.000-07:00

Landon has has a lot of new accomplishments in the developmental world since we last blogged! So I will list them out so it's easier to read!

Landon is now crawling very fast and is all over the place
He loves to pull up on everything!
He has figured outt aht he can use your pant legs to pull himself up and be standing while holding on to them, just like you!
He is starting to stand only holding on with 1 arm
He will occasionally let go with both hands for a few minutes.
He has learned to click his tongue! He will even click it back at you if you click yours.
He can make semi-raspberry noises. They aren't very loud, and it takes a few tries, but he can definately do it.
He is in to everything. He loves to explore and see everything.
He is very alert and very clever when it comes to getting to or getting what he wants from everyone.
He is really babbling now. He says: "bababa, gagaga, dadadada, mamama,"
He loves to blow bubbles with his mouth.

I cannot believe my little guy has learned so much and is so active and happy all of the time. He is constantly changing and learning new things so fast!

7 Months Old!

2009-08-19T16:44:00.000-07:00

Landon is 7 months old today...and do you know what that means? We can now sleep for 7 hours straight at night between feedings, woohoo! He is doing so well and I cannot believe he will be 1 in 5 months...someone please help me figure out how to slow down the time!

What Landon is doing:

Crawling on all 4's!
Pulling himself up and standing while holding on to the couch or something sturdy
Starting to eat finger foods. Such as the Gerber Stars, Yogurt melts, and the baby cheetos!
He eats 3 meals a day of baby food and loves everything, but one thing he has tried!
He has 1 tooth that is almost fully in and the 2nd bottom tooth is well on it's way.
He still nurses 1 feeding a day
Reaches out to go to have someone hold him. He does this now if say Scott is holding him and he wants me to h old him he reaches out and leans in my direction...super cute!
Not a big fan of strangers unless one of us is holding him and then he will flirt.
Loves to chase the dogs around!
Loves to play with shoes.
Can hold his bottle all by himself.
He goes "uh, uh, uh" while bouncing up and down if you have a bottle or food and he wants it.
We are working on baby signs such as "more", "milk", and we may add a few more here shortly.
He loves to play on the floor, with all of his toys and even goes for the dog toys so we have to be careful!
He loves to pull things off of the counter or book shelf if he can reach them!
We are working on going to sleep and self soothing. It's really hard for me b/c I love cuddling him until he falls asleep, but I can't be doing that when he is 10! It's a slow process, but we will get there eventually.

I will post a picture of him tomorrow. I do not have our regular camera handy so I am having to take pictures with our new video camera, and I haven't loaded the software onto my new computer yet. I promise to get to it tomorrow. i need to take his 7 month picture tonight too!

Couch Surfer

2009-08-13T14:07:00.000-07:00

Well our little man is just punding out those milestones and REALLY early too! The day AFTER he started crawling..so Monday...I was sitting on the couch while Landon was playing on the floor and the little guy crawls over to the couch and then uses the blanket that's hanging on the couch to pull himself up. So I look down to see him staring over the couch at me like "look what I can do mom! Isn't this cool?" It was amazing, so now he is always pulling himself up on the couch. He tried to do it on the fireplace the other day, but will the foam padding we put on it he can't get enough of a grip to pull up. The other day he pulled up on the couch and then bit me on the toe! So yes that tooth is still coming through, and man is it sharp..that love bite hurt.

We have a crawler w/ a tooth!

2009-08-09T20:22:00.000-07:00

Landon has been making huge leaps in bounds lately. On August 8th his first tooth (one little spike) broke through on the bottom right side! And then today on August 9th, Landon crawled on his hands and knees for the first time! He took off towards a car that was on display at the mall today when we were hanging out and let him play on the floor in one of the areas with couches to lounge on. It was amazing to watch him just get up and crawl...he went 4 paces! I am so excited I cannot believe that my 6.5 month old is crawling already. Landon is also already trying to pull himself up on things, he tries to stand but doesn't quite have the balance to do so yet, but he is working hard on it everyday! It's been a super weekend at our house and we couldn't be more excited or proud of our little man :o) His 2nd bottom tooth is just about to break through. I am hoping to catch him crawling on the video camera this week and I will post the vidoe when I get it. I will also try and get a pictureof him with his tooth. He is very shy about letting me see them so I will do my bestest.

Sorry

2009-08-06T10:33:00.000-07:00

I know I have been a bad blogger lately, but I have been super busy and sick. I had mastitis and let me tell you it HURTS. It was one of the most painful things I have ever experienced in my life. I am still on these super high powered anti-biotics for it, and I cannot nurse Landon until 4 days after I finish them..they are that strong!

Landon is so big now he reaches for and grabs everything he might possibly be able to get ahold of. You really have to keep a good eye on him! He has also started army crawling every where so he is officially mobil now...time to baby proof the house! he can also push himself up from laying down into a sitting up position and stay sitting up! And we have been teething in our house...any day now and his bottom two teeth are going to pop through. He has been really fussy and clingy especially at night. We have been usuing the Hyland's teething tablets and I love them. They are all natural , but they take the pain away and he sleeps so much better. I just refuse to load him up on tylenol because he's teething. he has had some days where he has a slight fever from the teething and I have to give him some tylenol then, but that's the only time he gets it.

Other than that we are just enjoying our summer. I am taking a break from school and reevaluating what it is I want to do with my life. I would really love to work 3 days a week and stay home the other 2 days once Landon is cleared to go to daycare. I really want to be able to go up to his school and have lunch with him on a regular basis, and play with him, and be a room mom etc once he gets to school age. Hopefully I can find a PRN or PT Speech job in Arizona. We will see though.

I hope everyone has a wonderful weekend. We will be in Dallas visiting family and friends!

6 months pics!

2009-07-20T19:50:00.000-07:00

Landon turned 6 months old on Sunday and we had pictures taken. He took some adorable pictures, and my friend Holly and her baby Jenna came with us, and we had a blast! Landon is now eating solid foods and Loves Bananas, Apples, Squash, and many other things he has tried. We love trying new things and seeing how he reacts to them.

Landon, Me, Holly, and Jenna! Holly was my college room mate and Jenna is about 6 weeks older than Landon!

Landon and Jenna! They had so much fun grabbing at each other and playing with each other.

Landon and Mommy!

Landon in his Payne Stewart outfit. I love his smile.

My super cute little boy, I love his outfit!

San Diego

2009-07-13T14:26:00.000-07:00

We went on Vacation to San Diego over the weekend! We had a blast and really enjoyed ourselves. We went to the Zoo, The beach, The USS Midway, and a few other places around town. Here are a few pictures. Sorry there are quite a few I just couldn't decided which ones to show you. We decided on the drive home that we want to go back soon and hit the spots we missed! The weather was absolutely gorgeous, it couldn't have been a more perfect weekend.

Zach, Landon, and I eating dinner on the bay!

Look Zach can fit in a torpedo tube! This was taken on a Russian Submarine that they had set up as a museum. Only Scott and Zach went in this submarine, the American one was tight enough for me.

Scott and Landon taking a break in the shade from touring the USS Midway.

Landon and I in one of the door ways on the USS Midway. It was alot of fun to tour the Aircraft Carrier, it was huge especially when carrying a 17 lb baby on your front :o)

Scott, Zach, Landon, and I sitting at RT's Longboard Grill on Pacific Beach. We came here to get t-shirts b/c as most of you know we are HUGE Deadliest Catch fans, and this is where they filled this year's "After the Catch."

Zach at the beach for the first time!

Landon in the Ocean for the first time! The water was 69 degrees so this was as far in as we went.

Zach "driving" the submarine.

Scott, Zach, Me, and a sleeping Landon at the San Diego Zoo. Do you see the Panda bear in the background?

Scott and Zach petting a giraffe, with Tristen our guide. We went on a behind the scenes tour and got to pet and get up close with lots of different animals..it was a blast.

Zach feeding the Giraffe, Silver. It doesn't look like it, but they tug hard when they take leaves off of the branch!

Landon and I taking a break at the San Diego Zoo. He was being super cuddly :o)

Landon, Zach, and I at the San Diego Zoo! Landon wasn't so fond of the hat, though it kept falling into his eyes.

Mommy and Baby Koala.

Panda Bear. I have now seen Panda Bears in both locations in the U.S. San Diego and the National Zoo in D.C. The boys saw their first Panda's here in San Diego!

Mommy and Baby Gorilla! The baby is sleeping in Landon's favorite sleeping position!

Landon playing on the Gorilla statue! See how well he is sitting up now!

Zach, Landon, and I in front of the USS Midway.

The view from our hotel balcony!

Happy 4th of July!

2009-07-04T20:46:00.000-07:00

We wanted to wish everyone a very Happy 4th of July. We had friends and neighbors over to BBQ and hang out. We had a blast! Landon was so busy playing and hanging out with everyone, that he crashed about 1/2 an hour after everyone left, around 7 p.m., which rarely goes to bed that early! I am now working on finishing up my school work for the week so I can start on this next week since we visit the Geneticist on Tuesday and then go to San Diego on Thursday for our vacation!

I am so excited to go to San Diego. I have never been to California, and I have been dying to go to the San Diego Zoo since I was little. We are also going to go to the beach since Zach has never seen the Ocean besides Galveston, TX and that is so gross it's not even worth counting. Scott wants to go on a Harbor Tour so we will do that too. I am secretly hoping that we can go on a Sunset Dinner Cruise too, but we will have to see if we have time. I am slaso dying and really hoping we go to the Longboard Grill where they filmed this year's "After the Catch" I really want to get a T-Shirt. For those of you that don't know I Love, Love, Love Deadliest Catch! And our wonderful friend Garry got me a t-shirt from the Lockspot where they were filming "After the Catch" before this season!I can start myself a collection :o)

In baby news, Landon has start bulldozing! He will stick his butt up in the air whith his legs and head still on the floor and push himself forward with is feet. it is really cute to watch. He can also pivet himself around to look in all directions. We are not far from crawling and being mobile, which means we need to start baby proofing our house. I found the baby gates I want for our stairs. Our neighbors have them and they are amazing. I am going to order them off of Amazon once we get back from San Diego. Landon and I alos have Thrush. I do not wish this on anyone. The poor guy is so miserable. He has it on his tongue and his poor little butt, and I have it around my nipples, from nursing...can we say miserable? But we have meds and just have to wait for them to do their thing.

Anyways, I digressed, but I hope everyone had a wonderful holiday weekend!

Getting Ready to Crawl

2009-06-27T21:41:00.000-07:00

Landon has started getting up on his knees while he is on his tummy! I am getting really excited. Yesterday while playing on the floor he pushed up on his knees and was also pushed up on his arms! He is getting so strong and is practicing how to crawl. He just needs to put all of the pieces together, and he will get it and just take off crawling here soon. Scott, myself, and Carol our Doulah all think that he will be crawling around 7 months! My sweet baby boy is growing up and getting big way to fast.

We are still working on sitting up. He can sit up for between 10-30 seconds before having to have help. We are working on it and hopefully he will be sitting up soon. Especially since Landon has know out grown his infant car seat and we are now in a convertible car seat!

In other news we are going on a family vacation this year! We are headed to San Diego in July and I am super excited about it. We will be going to the zoo, and coincidentally it will be Landon's first trip to the zoo! We are also going to go on a harbor tour, and probably a few other things to be decided later.

Happy Father's Day

2009-06-22T08:29:00.000-07:00

The boys with Daddy on Father's Day

Scott grilling on his new grill! See those yummy steaks? They tastes as great as they look!

Yesterday Landon celebrated his first Father's Day with Scott! Zach also celebrated with us when he got home from hanging out with Grandma. They all had a great day. Scott recieved a new Charcoal Grill and Smoker! Landon and I "helped" him put the grill together, we made him breakfast, and then Grandma and Great-Grandma came over for dinner. We grilled steaks on the new BBQ! Scott also recieved a baskin Robbins Ice Cream Cake, his favorite :o) Here are some pics from Father's Day. I really hope that everyone had a wonderful day yesterday, and Happy (late) Father's Day to all of the dad's out there!

5 Months

2009-06-20T08:22:00.000-07:00

Landon turned 5 months old yesterday! Time has gone so quickly, I cannot believe he is this big already. We saw the Pedi yesterday and he is between 27-28 inches. They couldn't get a more accurate reading b/c he is so squirmy now-a-days. We didn't get a weight b/c we were only there for shots. It looks like we are going to have to invest in a new carseat. The infant seat only goes to 29 inches and Landon has been know to grow 3/4 inch in a week to a week and a half! I think we are going to get the Graco My Ride car seat, we are going to go by Babies R Us and take Landon and have him try it out and see what he thinks.

In other news I recieved my Ergo Carrier yesterday, and of course we immediately had to try it out. I absolutely love it. It makes carrying him so easy, he can see out, it's comfortable for him, and most importantly it is comfortable on my back. I could carry him around all day in it without a problem. Scott and I go on walks at night and I always put Landon in a carrier b/c it is way easier than trying to navigate the stroller. I will post pics of us with the Ergo tomorrow or the next day when I get the chance between our busy weekend and doing my last homework assignment for school for the week.

Jumperoo

2009-06-09T21:45:00.000-07:00

Scott and Zach put together Landon's Jumperoo/Exersaucer on Sunday night, and he LOVES it. We put him in it and he started jumping right away and playing with all of the toys. He smiles, and squeals with happiness and it is so much fun to sit and watch him play. I am so glad we decided to put this together so he could play in it. It is also very good at wearing him out. He was in the Jumperoo this morning for about 30 minutes, and he took a 4 hour nap! From around 8:45 a.m. to about 12:45 p.m. only waking twice to eat and then falling right back to sleep! I took a nap with him, and let me tell you it was heaven to get some much needed sleep during the day, especially that much sleep! For those who don't know I have started co-sleeping with Landon in the guest bed until he falls into a deep sleep and then I put him in his crib, so he is still sleeping in his bed 90% of the night. Well, for our naps in the morning I lay with him carefully and make sure there are no sheets or pillows any where near him or his face. It works out really well b/c he loves to snuggle up and sleep with me, and I just love the snuggle time with him! Anyways, without further rambling here are the pictures of my sweet baby boy in his Jumperoo/Exersaucer thingy:

There is so much fun stuff to play with here, did you know how much there was to explore Mom? Check it all out, I will show you how it works!

Wow! This thing is super neat, Mom.

Daddy showing him all the cool things on his new toy...He's a ham for the Camera though!

ABC's of Regan

2009-06-08T20:41:00.000-07:00

ABCs of Me
A - Age: 25
B - Bed size: Queen
C - Chore you hate: Vaccuming
D - Dog's names: Boomer & Schwepps
E - Essential start your day : Cereal right now, although I do like an occasional flavored coffee.
F - Favorite color: Pink & Brown
G - Gold or Silver: White Gold
H - Height: 5'6
I - Instruments you play(ed): Violin (Badly) for 5 years, Clarinet for 8 years, Saxophone for 5 years.
J - Job title: Grad Student and Mommy
K - Kid(s): 1 Step-Son Zachery, 13 and Baby Boy Landon, 4.5 months
L - Living arrangements: with Scott, Zach, Landon, and the dogs in our new home!
M - Mom's name: Kathleen
N - Nicknames: Sweetie, Honey Boney, Regs, Ching, and a few others
O - Overnight hospital stay other than birth: NICU after I was born for Jaundice, Appendicitis and removal when I was 18, and then when I gave Birth to Landon in January
P - Pet Peeve: Bad Table Manners, Gum Smacking, and bad drivers
Q - Quote from a movie: Umm it's not from a movie, but it is "Every man is entitled to fall madly in love with a red headed at least once in his lifetime" -Lucille Ball
R - Right or left handed: Kinda Both. I was supposed to be left handed, but my mom disagreed with it.
S- Siblings: Amy, Travis, and Aaron
T - Time you wake up: Every 3 hours for 6 more weeks to feed Landon. But when I wake up for the day ranges between 6:30 a.m. and 8:30 a.m. It all depends on when Landon wakes up, I prefer after 9 though.
U- Underwear: is worn
V - Vegetable you dislike: Beets, Tomatos
W - Ways you run late: traffic, alarm didn't go off, didn't have everythng ready for Landon on time, Landon gets hungry last minute and I have to feed him.
X - X-rays you've had: We'll just go ahead and say 90% of my body. I was a gymnast.
Y - Yummy food you make: Macaroni and Cheese, Beer bread, Zuchini (sp?) bread, Coconut Cream Pie, Potato Salad, and lots lots more..this is a better question for Scott.
Z - Zoo favorite: Monkeys, Elephants, and and the Hippopoatamuses.

I tag Melissa, Kelly, Laney, and Lindsey!

Congrats to Sarah

2009-06-03T16:41:00.000-07:00

I wanted to say Congratulations to my really good friend Sarah. She and her husband Jimmy welcomed their baby girl, Riley Mae, on Monday! I am so excited for them and Riley is absolutely adorable! Get as much sleep as you can guys and enjoy every second with your little girl.

Headed to Dallas

2009-05-28T04:55:00.000-07:00

Scott, Landon, and I are headed to Dallas today! I am excited to be able to see my family and for Landon to be able to see his Grandpa again! I think I am most excited about seeing some really good friends and eating at our favorite "Dallas only" restaurants. I cannot tell you how much I have missed Texas BBQ. We found a pretty decent place here in Tucson, but nothing compares to the place by our old house in Frisco. The actual reason for the trip is to go to my sister's baby shower on Sunday. Please pray for safe travel for us today and Sunday, and I promise to post pictures when we return! Hope everyone has a wonderful weekend!

Adventures in Rice Cereal

2009-05-22T21:14:00.000-07:00

Well on Tuesday, May 19 2009, Landon had his first taste of solid foods in the form of Rice Cereal. He wasn't quite sure what to think, but I think he was more leary of the foreign object entering his mouth, the spoon. For the first 2 days he would jump every time you put the spoon in his mouth, but as of today he seems to have made peace with the spoon, and we are successfully getting more rice cereal down the hatch then all over himself and me. Or at least so it seems. We have tried Brown Rice cereal so far, but tomorrow we are going to try regular rice cereal. I have also bought Barley cereal, but our Pedi says not to give him anything except rice cereal until he turns 6 months old, so we will follow what he says.

Here are some pictures of Landon's first rice cereal experience:

First bite.

It's going in...see how there is more on his face, than actually on the spoon. We missed the first time, oops.

"Ummm...Mom, what exactly is this stuff? Are you sure I can eat it? Is that Spoon really necessary? I don't need one for my milk."

It makes a really cute go-t don't you guys think?

4 Months

2009-05-19T14:52:00.000-07:00

Landon is 4 months old today! My how time has flown by since he got here. He is doing so much, it is really amazing to us. He is rolling over both ways so quickly now that if you blink you might miss it. He is also constantly playing with his feet or sticking them in his mouth to eat. And what is super amazing is twice now when we were holding tissue boxes he will actually (slowly) pull a tissue out of the bow and then drop it. He is going to be one smart kiddo I tell you. He is also trying so hard to crawl that if he could manage to get his knees under him and his arms up a little more he would be off and running. We are so amazingly blessed to have our sweet baby boy. I love watching him grow up and learn new things right in front of me. Tonight we get to try Rice Cereal for the first time. I am WAY to excited about this, and cannot wait for Scott to get home so we can get Landon all set up, the Camera ready, and see his reaction to solid foods!

Here are some of our favorites of the Pictures I took of him today for his 4 month old shots:

Always has fingers in his mouth, but he is not teething yet.

Looking like a little man sitting on the Love Seat!

Watching the puppy dog, he thinks they are really fascinating creatures to watch and sometimes pet.

Swimming!

2009-05-18T11:36:00.000-07:00

Landon went swimming for the first time yesterday in his Great-Grandma's pool. He had so much fun and really enjoyed being in the water. We thought he might cry at furst, but he didn't. He only started fussing when he got tired and was ready to get out of the pool. He seemed to have a blast, he was kicking his legs in his float, and slept very soundly last night, but was up and ready to go at 5:00 a.m. That's what happens when they pass out at 7:00 p.m.

Hanging out with Daddy and Big Brother before walking down to the pool. Daddy put his hat bill up and it is now called "sporting Vanilla Ice"

Sitting on the pool steps with Mommy gradually working our way into the water.

He was leaning forward in his floaty b/c he was kicking his legs under neath...he also enjoyed chewing on the blow up part. We are really glad he has no teeth right now.

Playing in the pool with Daddy. They had lots of fun floating around together.

Hanging out with Mommy in the pool, and a good view of his Floaty. It has a canopy over it, which is nice for the Arizona sun!