Some Pictures for the day

Sleeping in my bobby. One of my favorite places to nap!

Tummy time is hard work mom.

Hanging out in the "Big Bed" making funny faces for the camera!

Oops

Oops...It's been awhile since I have blogged. Sorry. Life has been a little hectic. I promise to try and do better.

Updates on our life:

1. Landon is getting Baptised on Saturday. I am really excited about this...and the fact that cake is involved.

2. We have really great friends coming from Phoenix for his Baptism and I am excited to get to spend time and hang out with them!

3. Scott bought me the prettiest Garnet ring! I will post a picture of it tomorrow. I got to pick it out! I am so excited b/c Garnet is Landon's birth stone and I wanted a ring for my right hand :o)

4. My wedding Photographer in Dallas will be taking picture of Landon and I while we are there. He did such a good job at our wedding I can't wait to see what he will do with Landon and I. And, I am super excited to get professional pics of him while he is still really small!

5. We are going to Dallas in a little over 2 weeks! I miss my friends and family and can't wait to see everyone!

6. We have been praying that Landon's results will come back negative. This Friday will be 2 weeks, so they will send the sample off and I am hoping they won't dawdle in doing the test.

7. I Love my husband more and more each day. He has helped me w/ Landon and every thing else going on so much, and I think everyone should know how wonderful he is.

1 Month Old!

I am a day late on posting this, we had a super busy day yesterday, and then Landon decided he didn't need a nap. I did however take the picture finally at about 10:30 p.m. last night.

I cannot believe that my baby boy is already 1 month old. It doesn't seem like we have had him that long. He has changed so much, at least to me. His hair has turned the exact same color red as mine, he has grown an inch and a half, and put on at least 1 pound. He also look older in the face...at least to me. I do h ave to say it is much easier to change his diaper now that he his legs and arms are stretched out most of the time, instead of balled up like they were in the womb. He is also talking, looking around at every thing, nursing like a champ, and eating around 4 oz a feeding! We are just enjoying every second with him, and soaking it all up!

Happy Dance

Yes, I actually did a happy dance today (with Landon) around the kitchen! It was well deserved too :o)

I called our Pedi this morning after talking to the Nutritionist from the Geneticists office last night. They were wanting us to start supplementing Landon's formula w/ all kinds of stuff since this Portagen (the Rx) formula, has basically filler junk in it, but they are medium chain fats. They wanted us to give him Flax Seed Oil by mouth 2X/day and then they were going to have some compounding Pharmacy make us all this other stuff to give him b/c he needs it to grow and develop properly, but again the Portagen is lacking it ALL. My problem w/ all of this was that the Nutritionist said that it would more than likely upset his stomach and give him diarhea...umm PASS, this kid has been through enough already and I am not willing to purposefully make him more miserable (and me too). So the Nutritionist had mentioned that there was a formula called Progestamil, that Landon could take and it contained everything he needed in it w/o having to be supplemented, it was just a bit more $$. Well I called the Pedi first thing this morning nicely demanding in a round about way that we be switched to the Progestamil, and explained every thing the Nutritionist had told me last night. Well thank God he completely agreed with me, and immediately put a call into the Geneticist just to double check and find out if Landon should have the formula with or without Lipil in it. Well, the Nutritionist called us back tonight, and had even better news for us...are you ready for it?!?!?

WE CAN NURSE FOR 1/2 OF OUR FEEDINGS!!!!!

I am so excited, I have been basically begging to be able to nurse my son again at least a little bit, and since he isn't presenting as having the disorder...and everyone believing that he more than likely doesn't have it, or if he does it is very, very mild we can nurse again! So this is why Landon and I did a happy dance around the kitchen tonight!!

This is definately a step in the right direction, and the direction I know in my heart...that my son is a normal healthy child, and for whatever reason had his screenings and a test come back all weird. We will have to wait and see if I right about that yet.

1st Valentines Day

Landon had his first Valentines Day Saturday. We didn't do anything exciting. Landon, my MIL, and I ran errands most of the day, and then Scott made us dinner, we exchanged small gifts, and then watched Scott and Zach play Rock Band 2 (my gift to Scott...just the game, we already had the rest). Landon fell asleep to it, so I took the oppurtunity and passed out too. I'm telling you we are exciting people lately :o)

OMG, while running errandsI bought the biggest box of diapers I have seen in my life, lots of wipes, and a gargantous thing of laundry detergent b/c buying them together earned me a gift card...that I can use on more diapers later :o) We also bought his Christening outfit since he will be Baptised on the 28th at our house. I don't buy into the whole "boys must wear a christening gown too" philosophy. I just bought him a cute white-ish colored outfit.

We hope everyone had a good Valentines Day. Here are some pictures of Landon in his Valentines Day outfit. If you can't see it, the shirt says: "Little Heart Breaker."

What We Learned in Phoenix Today

We had our Geneticist appt in Phoenix today with Landon. Overall the appt went well, and we had all of our questions answered. Our appt lasted 3 hours, and the Dr spent lots of time explaining things, going over things, drawing diagrams for us, etc. I feel comfortable taking Landon to see him, but still really hope it will not be neccesary at all.

I am going to make bullet points of what we learned today, it's an easier way for me to organize it all and explain it w/o going on and on.

• No one is completely sure Landon even has this disorder. They only found trace amounts of the enzyme on the last blood test they did. So to be safe they put him on the diet, meds, etc that they would for an individual with the disorder to be on the safe side.
• Landon does not have any outward signs of the disorder..which is great news. They said he looks like a normal, healthy baby and he is doing great. He is developing normally, gaining weight appropriately, and growing appropriately.
• If Landon does have this disorder, he has a VERY mild case of it, which is great news b/c contrary to what we had read on the internet and found out through other sources, this disorder can be fatal if it is really severe. We would have known at birth, or shortly after if Landon had a severe case, he would already have heart, liver, and muscle damage which he does not.
• We may be able to breast feed again even if he does have a mild form of this disorder. He has to have some long fats as they are needed for healthy brain development, so I am holding out hope that worst case scenario he ends up with this, we may still be able to nurse along w/ taking the Rx formula we are on.
• If Landon has this disorder insurance is required by law to cover a good amount of the Rx formula for him, which would be a great help.
• The Geneticist was not thrilled at all about the possibility of Landon going into a daycare if he does have the disorder.
• If Landon does have this disorder he would be on a low fat, heart healthy diet for the rest of his life. Meaning his diet would consist of only 20-30% fat where as normally our diets are 30-40% fat.
• Landon would still be able to have Pizza, Cake, etc. inmoderation like other normal children and adults, we would just have to balance it out w/ a few meals after being lower in fat than even he would have normally had.
• He will be able to exercise and be in sports if he would like, he would just have to consume alot of sugar while doing so and stay hydrated.
• One scary part (besides this thing possibly being fatal in it's severe forms) is that if he gets a stomach bug, or really sick, or dehydrated he would have to be admitted into the hospital to recieve IV fluids in order to avoid dehydration and any muscle or liver damage that could possibly go along with it. We will be given a note to take with us to the ER if this is ever the case.
• Scott and I are still really optimistic and holding out hope that all of this is a false positive, and he doesn't even have the disorder to begin with. With only trace amounts and both positive and negative tests there is still a good possibility that he doesn't have this at all.
• The geneticist said that he believes if Landon has it (it's still and if and will be for a few more weeks) it's very mild, his gut tells him his wouldn't be fatal b/c he has no outward signs or symptoms and no damage and only trace amounts on one test and negative results on other tests, but he can't tell us more until we get results back from today.
• Landon had the skin biopsy done. It is the only way to find out 100% if he is affected by VLCAD or not. They have to let the skin grow in a lab for 2 weeks, and then they send the sample and the growth off to Baylor in Dallas and the Geneticist (the lead one on these disorders in the country) will literally inject the skin with fat and see how it metabolizes it and that will tell us for sure if he has the disorder, and how severely he is or isn't affected by it.
• At 6 months of age we can finally stop having to feed him every 3 hours. We will be able to go as long as his age is in months between feedings. For example at 6 months he would only have to eat 6 hours, and 7 months it would be 7 hours, etc. So we will be able to sleep through the night, and he will be able to eat like a normal person. He will though be on the formula as a supplement until he is about 1 year old.
• Both parents have to be carriers in order for the child to be affected by FOD (Fatty Acid Oxidation Disorders), so if Landon does have this, it is in both Scott and I's family. Where and on which side (our moms or dads sides) who knows.
• If we choose to have more children, and it comes back Landon has this, those children have a 25% chance of being affected as well. If they aren't effected they would be carriers 50% of the time, and totally un-affected the other 25% of the time. If Landon does in fact have this disorder this is something Scott and I will discuss before deciding on more kids.
• He will take the medicine that he is on, Carnatine, for the rest of his life if he does in fact come back with the disorder.
• Having this disorder does not pre-disposition him to contract anything else in his life.
• He will still be vaccinated normally, but we are going to go ahead with our alternative vaccine schedule. I am not willing to go through all of this with him, and then end up with Autism or something like that as well. One is enough, I could and can not handle anything else at this point.

So we are in a holding pattern until we get the test results back from Dallas. We will be continuing treatment like he has the disorder. The reasoning for that being treating it and it ending up that he doesn't have it will not affect him in any way, but stopping treatment and then his results coming back positive could cause irreversible damage, and neither Scott and I nor the doctors are willing to risk that. I feel sorry for my little guy that he had to have a skin biopsy today and he will always have a little round scar from it (they did it in a place that isn't visible readily). So we are just hoping, and praying that the results come back negative and we are just educated on metabolic disorders. Please pray for Landon and for negative results on this final round of tests. Everything is still a big if, which is both good and bad. I hate not knowing, but I am glad there is still a pretty good possibility for the results to be negative. Again, I am very thankful for our amazing Pedi and the fact that he has been so proactive with Landon and his treatment and getting all of this figured out. This is all I can remember right now, I am exhausted from the long day, and still trying to get Landon down for the night. If Scott or I remember anything else we will definately post it.

The Good, The Bad, and The Ugly

No, unfortunately not the movie. It involves Landon and our Pedi appt today.

We went to the Pedi today and found out that both he and the Geneticists are about 90% sure that Landon does have this disorder. He said the internet information is all that COULD happen, if left un-treated, not detected early, etc. What Landon has is NOT life threatening, it is manageable and controllable (which is the good news), but he will have to be on Carnatine (the medicine he has been taking since we started this whole process) and more than likely a diet high in complex carbs and low in "very long" fats..which we have yet to find out exactly what those are.

The Good News from today: After 4 more attempts at drawing his blood *for those who don't know a little over a week ago he was stabbed 9 times, including twice in the head, to try and draw blood for other tests) and me refusing to let them do anymore "trying" unless it was from his foot (where I know from all the other stabbings they can get blood from), we received great news that his liver enzyme levels, his heart and muscles are all un-affected b/c our Pedi kicks butt and was very proactive in Landon's treatment (apparently damage to these organs can happen very quickly in babies, if this is not treated with the meds he is on).

The Bad: I am no longer allowed to nurse Landon. He is on a special Rx Formula. Apparently Breast milk is high in "very long" fats and this formula has only "medium" fats. He must eat at least every 3 hours. The no nursing is the hardest part for me right now b/c I have wanted nothing more as far back as I have wanted to have kids to nurse them...oh, well. And again thanks to our amazing Pedi he has talked w/ and convinced the maker of this Rx formula (which is hyper $$) to give us quite a few cases of the stuff for Free! He is also working with them to see if there is any assistance to help make it cheaper, and he is going to battle with the insurance company about covering possibly the rest or as much as possible for us. I am telling you, we are so lucky and blessed to have found this Pedi.

The Ugly: The only way to find out 100% sure if he has this problem is for them to do a skin biopsy on him. Not happy about this at all, and they will more than likely do it on Friday when we see them. Don't know much more about it.

It is something we can handle and he will lead a basically normal life with a few changes thrown in there. More than likely he will just have to eat more often, not eat a bunch of junk, and take his meds. He may have a lower energy level than "normal" people, but this can be controlled by eating more often and adjusting meds, etc. Or at least we have been told, but we won't know all of it until after Friday.

Thanks to all who have us in their thoughts and prayers. It means everything to us to know you are out there caring and loving our little boy right along with us.

Test Results

We received Landon's test results today from our Pedi. They were not what we wanted to hear. The first genetic screening came back abnormal, the second one came back negative, and now the more in depth tests they ran on him while on the medicine for the disorder they believe he has came back Positive for the disorder. Now, this being said our Pedi said the results are not 100% accurate, but this latest test is WAY more accurate than the screenings, so we are moving forward with Landon having the genetic disorder.



The disorder that Landon more than likely has is called VLCAD. It is a very rare disorder in which your body is lacking the enzymes, or the enzymes are not complete, that break down the fats in the foods that you eat. If left un-treated it can cause damage to some pretty vital organs. We have had Landon on Carnatine (the drug they use to treat this disorder) since the first screening came back abnormal. I will be meeting with his Pedi again tomorrow to make sure that he is gaining weight properly and to have him check him over to make sure he still looks good (this worries me a little...what exactly are they looking for in a 3 week old baby that could have gone wrong this quickly). Scott and I will also be taking him to Phoenix Children's Hospital on Friday to meet with the Geneticist that has been handling Landon's case. In any instance it is looking and the doctor's are moving forward with Landon being positive for VLCAD. We will have alot more information and all of our questions asked and more on Friday after meeting with this Geneticist, so I will update y'all once I know more.



I cannot speak for Scott on how he feels about all of this, but I can tell you how I feel. Currently I feel very numb. I want as much information as I can possibly get and I have about a bazillion questions running through my head, I just have to find a way to formulate them and write them down so I remember everything I want to ask this guy on Friday. Mostly I am sad...sad that my son who is 3 weeks old already has a hurdle in life. I am sad b/c neither one of us knew that we possibly had this in our families, hell we didn't know what it was until a little over a week ago. I want to know what quality of life my precious little boy will have. He is so sweet and loving and great, how could he possibly end up with something like this...he has done nothing wrong...nothing to deserve this. I feel like I am being punished for something I have done in my life...and it's not fair that it is him who has to suffer and have the disorder. I am really trying not to think to hard about ti all until we can talk to the Pedi (whom I love he is great) tomorrow and the Geneticist on Friday. I have plenty to keep me busy until then. Landon is now on a strict, must be fed every 3 hours (even at night..which sucks b/c he was sleeping 3.5-4 hours at a time), and has to take his medicine 3X/day with food.

Please keep Landon and our family in your prayers. There is still a very small chance that all these tests could be wrong and he could be perfectly fine...and some small part of me I think is clinging to this possibility.

My Favorite Things

So I decided to put down in words my favorite things about Landon so far, that way I will have an account of it as he grows older. So here we go.

1. I love that you are such a cuddle bug. I could cuddle with you all day.

2. I love the "awww" noise that you make everytime after you sneeze.

3. I love all of your facial expressions. They are truly amazing, and I wish I could capture them all.

4. I love that you have my exact color red hair.

5. I love that you hate wearing socks and always kick them off, just like me.

6. I love how you look so happy when hanging out with Daddy.

7. I love how you don't laugh at me when I try to sing to you.

8. I love the smirk on your face after you poop or fart.

9. I love the way you look up at me w/ your big blue eyes when nursing.

10. I love how you don't fuss unless you truly need something.

11. I love that every time I sit down to finally eat you feel the need at that exact moment to be only held by me.

12. I love how you take this medicine like a champ.

13. I love how you smell.

14. I love how when you want your pacifier or are going to nurse that right before we put it in your mouth you shake your head side to side.

15. I love the face you give Boomer when he goes to smell you and kiss your feet for the millionth time that day.

16. I love that when you have had so much milk that you have fallen asleep w/ a smile or smirk that we call it "milk drunk".

17. I love that when we wake Daddy up you fall back asleep snuggled w/ him.

18. I love that you let Daddy and me take ots of pictures before getting fussy about it.

19. I love your big feet.

20. I love how you will sit on the couch and stare at us for hours while we talk to and play w/ you.

And mostly we love you.

More Pictures!

I cannot believe that Landon is already 2 weeks old today. It doesn't seem like we have had him that long. He is still a great baby, usually only fussing when he truly needs something. We also finally slept 99% of the night in our crib last night instead of in the recliner with mommy. I am very happy about this. Our Doulah brought over "The Happiest Baby on the Block" dvd yesterday and we watched it, and the techniques are amazing. A few of them combined are how I was able to get him to sleep in his crib. I definately reccomend it to anyone having a baby. I also got a Moby wrap (will post pics w/ it later). This is going to be a total God-send in the airport in march when we go to Dallas. It also allows me to eat w/ both hands (which is an amazing accomplishment right now), and do stuff around the house. I just can't cook with it on b/c we have a gas stove and it would put Landon too close to the burners.

Without further stalling..here are the most recent pictures of Landon. I don't have any from today at 2 weeks b/c the camera battery is dead, and I can't figure out where Scott has all of the parts to charge it.

Great-Grandma came to visit, Landon really enjoyed cuddling with her.

Landon's favorite hang out is on a pillow on Daddy's lap. He's always alert and awake when hanging out with Daddy, but seems to fall asleep whenever he is with me.

First time in our swing. It was a little to fast for him, so I tapped it with my finger. He needs to be a little heavier before I think he will fully enjoy it. He really liked watching the rainforest animals move around on the mobile attatched to the swing though.

Hanging out in the vibrating chair. Jokingly nicknamed "The Vibrator" in our house. It's a great investment, I am hoping it allows me to shower during the day, instead of having to wait until Scott gets home.

Hanging out in the big bed w/ daddy for the first time. Daddy was happy to have Landon, but not so thrilled I was using it as photo time. It's a cute picture though.