Monday, December 13, 2010

Emeline's 3 Hour Birth Story!!

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

Monday, December 6, 2010

Miss Emeline is here!!!

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!

Tuesday, November 9, 2010

35 weeks (a day early)

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.

Wednesday, November 3, 2010


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.

Friday, September 10, 2010

26 weeks

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!

Monday, September 6, 2010


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: 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!

Monday, August 30, 2010

Team Landon

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

Tuesday, August 24, 2010

Amnio Results!

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!

Saturday, August 7, 2010

It's a Girl!!

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!

Sunday, July 4, 2010

Happy 4th of July!

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!

Friday, July 2, 2010

New Backyard Fireplace!

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!!!

Tuesday, June 22, 2010

Landon is a medical anomally!

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.

Wednesday, June 9, 2010

New VLCADD info

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

Wednesday, June 2, 2010

Big Brother!!!

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!!

Friday, May 28, 2010

First Shiner!

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!

Saturday, May 15, 2010

Hair Cut!

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.

Wednesday, May 5, 2010

Geneticist Appointment 5/4/2010

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!

Wednesday, April 28, 2010

15 months!

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

Monday, March 29, 2010

Little Gym

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!

Saturday, March 13, 2010

Little Model

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!

Saturday, March 6, 2010

Geneticist's Appointment

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 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!

Monday, March 1, 2010

Vote For Landon!

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!

Wednesday, February 24, 2010

Couch to 5K

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!

Tuesday, February 16, 2010


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 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!

Thursday, February 11, 2010

Same Page

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 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 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
If Landon has diarhea and is refusing food and
If Landon's glucose level goes below (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
If Landon has a 101 degree fever and is
If Landon is lethargic and refusing food or

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 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!

Thursday, January 28, 2010

Bit the Bullet

 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!

Thursday, January 21, 2010

Landon's 1st Year

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

Tuesday, January 19, 2010

Happy 1st Birthday!

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
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
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
Sweet dreams

Monday, January 18, 2010

1st Birthday Party!

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 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!

Wednesday, January 13, 2010

Little Helper

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!

Monday, January 11, 2010

Counting Down

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!