Tuesday, February 10, 2009

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.


  1. Keeping you in my thoughts and prayers...

  2. Well it sounds like this is very manageable, which is so great! Gives you a great opportunity to be even a greater mommy! I'm so happy to hear that Landon's little organs are not affected, YAY! Your pedi sounds AMAZING!

    It looks like this can just be adapted into your life with some change here and there, which is a great positive. But I know, hearing any bad news about your baby is REALLY hard to accept.

    I never BF, so I don't have anything to say about that. I know it's hard on mommies who can't to it for whatever reason.

    I will be keeping you and your sweetheard in my thoughts and prayers.

  3. I am so sorry that you all have to deal with this. But it sounds like the pedi is great & will get you through this. Sending prayers & lot's of ((hugs)) your way!