Friday, March 12, 2010

ACH Appointment....

Owen had a follow-up appointment with his geneticist and metabolic nutritionist at Arkansas Children's Hospital yesterday...

We decided to take advantage of this road trip to Little Rock and have lunch at Holly's in Conway. Holly's has some of the BEST home cooking....the hash brown casserole is Josh and I's favorite! I discovered Holly's when I was in PT school and haven't found anything that compares. They're only open for lunch Monday through Owen's appointments put us in the area at the perfect time. But...I'm not sure how much longer we'll be able to go without Owen noticing that he's not eating the same thing mommy and daddy are.

Owen eating his not so home cooked meal...
After eating way too much at Holly's, we headed to Little Rock for Owen's appointment. Overall, it was a good appointment. They thought Owen looked great! He weighed in at 22 lbs, was 29" tall, and his head circumfrence was 18.9". He also impressed them with all his new skills...walking, running, clapping, flirting, etc.

The nurses definitely had their hands full. He wouldn't sit still to be weighed, so I had to be weighed first, then hold him and be weighed again. It was also a lot more difficult to keep him entertained for a 2 hour appointment. He played with the toys we brought for him, played with the toys in the waiting room, pulled/tore the paper off the examination table, roamed the halls, flirted with all the nurses, played with the nurses name tags, conned the nurses into giving him toys, etc...I guess you could say he was a handfull!!

As usual, they did blood work to make sure his levels are staying the same. This blood work will show us how well his body is doing with the fat that we added to his diet (10 grams per day). We should know the results in 2-3 weeks.

The biggest part of living with VLCAD is diet management, so we spent a majority of the appointment discussing options with the nutritionist. For the past 7 months, Owen has been on a special formula made of 84% medium chain fats, but has had 1 oz of breast milk added to each bottle to help with digestion. But...we are out of breast milk and the formula is only for kids under 1, so we're having to make some changes. We have new formulas and a medium chain triglyceride powder to try. The goal is to find good balance of fats...we need him to get enough fat for brain and retina development but not too much fat that it starts building up on his organs. The VLCAD keeps Owen from being able to breakdown the long-chain fats (which are in everything we eat), so he has to get the majority of his fats through the formula and MCT powder (which are mostly medium chain fats). We just have to find out what combination works best for Owen!

Dr. Kahler gave us the "Ok" to let Owen sleep for longer periods of time. Yea! He's been sleeping for 9 hours at a time and has been doing great. He drinks a 7 oz bottle before bed at 9 and then we wake him up at 6am to feed him again. The problem is that he's still tired, but won't go back to sleep after eating (which makes him a very cranky little boy). So hopefully with the extra hour of sleep he'll wake up happy!

We also had the chance to discuss Josh and I's genetic tests with Dr. Kahler. Here's the short version in laymans terms. Our genetic test showed that Josh and I are both carriers. As for future children...there's a 25% chance they will have VLCAD, there's a 25% chance they will be normal, and there's a 50% chance they will be a carrier (just like Josh and I). These are the same chances Owen had. After getting these results, Josh and I's biggest concern/question was...if our next child had VLCAD, would the severity be the same as Owen? And according to Dr. Kahler, any future children with VLCAD should be of the same serverity as Owen. This was very exciting news!

Owen with his metabolic nutritionist, Brandi...
he loved playing with her name tag

Owen was not very happy with the nurses when they took his blood. He was fighting them so much that they had to wrap him up in a blanket and pull one arm out. It ended up taking three nurses...but to say "sorry" they gave him some bubbles.

Owen got to eat his first fast food meal on the way home. We googled the few places and ended up at Chick-fil-a. Their chargrilled chicken sandwich was only 3.5 grams of fat for the whole sandwich. Owen ate about 1/3 of the chicken sandwhich and a cup of diced fruit....he loved every bit of it!! I have a feeling that we're all going to be eating chargrilled chicken sandwiches and fruit at Chick-fil-a really soon. Because...even though he loved his sandwich, he kept trying to get mommy and daddy's fries! After dinner, we let him try out the indoor playground...he seemed a little confused and just kept staring at the other kids.


Cindy Watson said...

Praise the Lord! That is all great news! Yay Owen!