I've recently had the question "he seems perfectly healthy, is there really something wrong with him?" asked about Dominic. So I want to answer this for anyone wondering. He is a healthy baby, doing very well. He is however missing/does not work the enzyme that breaks down fat. He will live a normal healthy life as long as his very low fat diet, his supplemented medium chain fat, and his more frequent feedings that are needed are followed. We do have to always keep an eye on him making sure that he is acting "normal" but again we normally would only have an issue that would require immediate hospitalization if one of the following happens:
-He gets the flu - *it is very important that we are not around people that are sick/have just been sick*
-Illness/infections
-He has diarrhea
-He has been out in the heat too long, overly heated
-Excessive exercise
-He is dehydrated
-He is not eating for some reason
-Going too long without food; currently it's feeds 3 hours during the day and 4 hours at night since you use less calories while you sleep
-Low blood sugar (we get a glucose checker soon)
Any of these would require hospital care and a continuous IV until he is better.
This would be called a metabolic crisis - here are some symptoms of one:
* extreme sleepiness
* behavior changes
* irritable mood
* poor appetite
* fever
* nausea
* diarrhea
* vomiting
* hypoglycemia
We have so far not had any problems, he has never been sick and he eats like a champ. We are just extra cautious when we are outside for long, we feed him on a strict schedule. He is doing much better than Jeff and I thought it would be. He had at birth abnormally high risk fat levels, they are now in the normal range with his diet and get checked regularly.
Sadly for me, Aidan will not be able to go to Preshool this year, out doctors think it would be best if he is not around so many germs that he could bring home to Dominic. As long as Dominic is doing well next year Aidan can then start Preschool for 1 year before Kindergarten. Aidan is actually very happy about not going to Preschool, he thinks school is some bad place for some reason. I'll be working with him at home.
So to anyone wondering, I hope this helps explain!
