Owen had a follow up genetics appointment about a week ago. We typically drive to Little Rock to see Dr. Kahler at ACH, but we decided to try the Lowell clinic this time. ACH flies in a geneticist once a month to the Lowell clinic, but Dr. Kahler is not apart of this program yet....so we saw Dr. Garnica instead. Since Owen is still the only child in Arkansas with VLCAD and Dr. Kahler is the only Geneticist at ACH that has actually worked with someone with this diagnosis, he will continue to be our lead geneticist. But we feel that our appointments are just "maintenance" appointments right now and we feel comfortable seeing another geneticist at this point in our journey.
playing in the waiting room...
checking out all the animals on the wall....this was Owen's favorite part of the appointment. He loved pointing out/naming each animal as we walked down the hall.....
We met with a geneticist and a nutritionist and discussed all the in's and out's of Owen's daily care....our typical conversation at every genetics appointment! Owen weighed in 31 lbs, was 2' 8" tall, and had a head circumference of 20.2 cm. He was cooperative throughout most of the appointment until it came to the blood draw. He's old enough now that distracting him and holding holding him down is quite the chore. They had a hard time getting the vein and the poor thing is still bruised!
It was discovered that Owen had an ASD (a small hole in his heart) when he was just a few months old. This type of ASD typically heals itself by one year of age, but we had not had a follow-up ECHO to confirm that it closed so Dr. Garnica ordered one. We are still waiting on the results, but we figure no news is good news!
Watching Toy Story while laying in mommy during the ECHO...
We got back all of Owen's blood work this week and everything looks good! We will continue at 22 grams of fat per day, 2 packets of MCT procal at morning and night, vitamins with Iron, and a DHA supplement at night.
2 comments:
Yay for a great geneticist appt!! What is MCT procal if you don't mind me asking. Landon has to take MCT Oil straight (or mixed in pudding), and it's awful but he does it w/o complaining, mostly.
MCT Procal is a medium chain powder that we add to his milk. You can also add it to a lot of other things (yogurt, eggs, etc.), but we stick to milk right now because he's so use to having his milk first thing in the morning and right before bed. I tasted it we he first started taking it and it's really not bad. You should ask your nutritionist about it. It provides him with all the medium chain fats he needs for the day and then we give him a DHA supplement (an oil that he takes without being mixed) at night. Let me know if you have any other questions.
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