Wednesday, May 6, 2009

Appointment in Phoenix

We had our first appointment since Landon's diagnosis yesterday with his Geneticist and his Nutritionist. The appointment went very well. We found out how truly blessed we are that his case is so very mild. We learned that we are truly lucky that he ahs the non-cardiac version of the disorder. Apparently children with the cardiac version of the disorder can "drop dead" (in the words of the doctor) at any given point from Cardiac Arythmia with no warning. This is something we do not have to worry about at all. I am truly thankful b/c I am honestly not sure that would be something I could handle. The Geneticist said we don't even have to worry about death from the disorder in Landon's case that we just needed to throw that out of our mind and not even think about it. The only minute way it could happen is if he got very sick and did nothing about it for a long time..and of course that will never happen. So without further stalling here are bullet points of what we learned yesterday:

  • Landon looks great! He is meeting all of his milestones on time or ahead
  • He is developing normally and has none of the "markers" for problems with the disorder such as gaining weight, meeting milestones, being alert, sleeping too much, etc. He shows none of these...which is why he is so very mild.
  • He will be able to eat some "junk" food like pizza, cake, etc. We will just have to vary his diet around it.
  • We will get alot more information on foods once he starts eating more solid food. But the general gist is all fruits, veggies, and whole grains/complex carbs are fine for him to eat. For protein he is to have lean protein. For example: Only white meat chicken with the fat trimmed off, fish, filets for steak not ribeyes. For cooking oils we will be using an oil called MCT oil (Medium Chain Triglyceride contains only medium chain fats that Landon can break down without a problem).
  • He will not have as strict a diet as most kids with the disorder b/c he is so mild.
  • We will have to watch processed foods and read the labels carefully.
  • He is able to be in sports, be active, swim, etc. Although he will need to drink lots of gatorade while participating...basically almost drowning himself in it...If you are looking to buy stock, this might be a good one to invest in :o)
  • He weighs 14 lbs 6 oz and is 25.75 inches long. This boy is growing! He has grown almost 3 inches in a month and a half and has gained 7 oz since he went to the doctor for shots on April 13th!
  • We also recieved the guidelines for taking him to the hospital when he is sick.
  • My favorite part: We can go 6 hours between feedings when he reaches 6 months of age! This means I will get to sleep longer than 2.5 hour stretches in a little over 2 months. I am so excited!
  • He will be able to eat in the school cafeteria. The Nutritionist will send the school a letter explaining his disorder and dietary needs and they can specially make him a lunch in the cafeteria along those lines so he can be like the other children in school too!
  • And finally Landon will be able to have regular cow's milk once we go off of Formula and Breast Milk. He will have 1% cow's milk with the MCT oil mixed in.

We have decided to go ahead and slowly start adding Landon's diet requirements into our own diets here at home so when he reaches the point that he is eating mostly solid food, it won't be a complete shock to us and our eating habits..we will have eased into it slowly. Also, for those that know us well..this does not mean we won't have sweets (ie: cake, ice cream that we all love in this house) it just means if we want it we will have to wait until after Landon goes to bed to eat it. He will be able to have it occasionally and we will gladly share with him then!

I am so glad that my little boy will be able to be a mostly normal child with mild dietary changes and having to take meds for the rest of his life (these meds help him move fat around to the different places it needs to go in order to process it..this is what his body can not do on its own).

So, we had a great appointment and learned alot about Landon's specific form of the disorder and how we will cope with it so he can be healthy and happy. I feel much better after talking to the Geneticist and Nutritionist yesterday. The only disappointing part of the appointment was learning his formula is going to cost a small fortune..I am still fighting with the insurance company to get them to cover it...but that's a different post for a different day.

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