Owen had a follow up appointment at Arkansas Children's Hospital last Monday. Overall, it was a good appointment....with the exception of trying to entertain Owen for 2.5 hours.
Owen fell asleep on the way to the appointment and continued to sleep until we laid him down to get weighed. This worked out surprisingly well because he was still half asleep and just laid there completely still (which never happens!) and let them take all their measurements. He weighed in at just under 27 lbs which is in the typical range for his age and height.
We spent the majority of the appointment discussing the possibility of dietary changes. Because Owen is still the only child in Arkansas with VLCAD, we had our metabolic nutritionist consult with nutritionist in other states about Owen's future dietary management. After a lot of discussion....we have a plan! If Owen's blood work comes back normal (or normal for Owen) then we'll start adding fat to Owen's diet. So...if all goes well, we'll let Owen have 20-22 grams (he currently gets 10-15 grams)of fat per day for 4 weeks and then do blood work to see how his body is handling the added fat. The idea is that we will challenge him and do blood work every 4 weeks until we find his "magic" number. According to one nutritionist's calculation, Owen may possible be able to work his was up to 27 grams of fat per day. It will all be based on how his body responds but we are excited to be working towards his "magic" number!! Who knows...he might be able to have something other than chicken after all!
This was a happy picture with daddy before he was wrapped up in a sheet and held down by 2 nurses to get his blood drawn. Hopefully we'll have all the blood work back sometime this week and get the "go ahead" to start eating more fat!
