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 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

 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

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!

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!

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

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

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!