Hospital Stay in April....

Owen was in the hospital for a few days at the end of April...

He started running fever at school on a friday afternoon (April 20th) and was sent home around 2:30. His fever was just over 101, so we got him home, gave him some ibuprofen, snuggled on the couch, and watched a movie.  Owen only made it a few minutes into the movie before he was sound asleep.  We decided to let the ibuprofen kick in and let him try and sleep it off, before we attempted to get him to eat...which is always our ultimate goal when Owen gets sick!  He seemed to be feeling better when he woke up and actually ate a little and drank his formula.

 He had a pretty high fever for the next 48 hours, but we alternated between Tylenol and ibuprofen every 4-6 hours which managed it pretty well.  He kept a little bit of an appetite, drank his formula, and did a lot of snuggling/sleeping and... by Sunday he was fever free! Yay! He was still pretty tired, but was eating better and didn't have a fever.  At this point, we thought we had made it through this illness without having to go to the hospital.

 He went to daycare on Monday and Tuesday, but still had a decreased appetite and wasn't quiet himself.  It was a gorgeous day on Tuesday and I got off early, so I picked up the kids and we headed home to play outside.  I noticed that Owen was a little sluggish when I picked him up, but I was wishfully thinking that he was still recovering from being sick and that he probably didn't get a good nap at daycare.  But I knew it was time when we got outside to play and he was just sitting or laying down and asking me to hold him.  He wouldn't jump on the trampoline (one of his favorite things to do), play ball, or play with Ava Kate....he just wanted to lay on Ava Kate's blanket.  At this point, we decided that we would eat some dinner, change clothes, pack a bag, and head to the hospital (after shift change). 

being transported to radiology via the choo-choo train....he kept saying chuga chuga choo-choo!

After dinner and preparing to sit in the ER with a 3 year old (packing a bag with snacks, phone charger, Ipad, change of clothes, candy, etc) Owen and I headed to the hospital while Josh stayed home with Ava Kate.  We have a VLCAD protocol letter that helps us navigate our way through the ER and we've unfortunately been to the hospital quiet a few times, so the process went pretty smoothly.  They drew blood work to run his VLCAD labs and ran his IV at the same time....one less stick is always a good thing.  

poor baby passed out around 11pm before they even got us in a room...

They swabbed him and tested him for everything and sent him for a chest x-ray as well.  Turns out, he had the flu (influenza type a)!  Talk about feeling like a terrible mom...not only had I not taken him to the hospital soon enough, but I had also sent him to daycare with the flu!  Ugh....

 Enjoying some snuggle time with Aunt Anna....

The biggest concern was Owen's VLCAD, not the flu.  VLCAD not only causes Owen not to be able to metabolize long chain fats, but it also causes him to break down muscle when he is sick.  Typically people store fat for energy, which is broken down for energy during illness.  Owen, however, does not have any fat storage, so his body starts breaking down muscle for energy.  When his first set of lab results came back, his cpk levels were 864 (typical levels for Owen are in the low 100's) which indicated that his body was breaking down muscle.  Owen's protocal is to draw labs and immediately start an IV of d10 at a fast rate (160) for 6 hours and then re-run labs.  So by the time the first set of labs were back, Owen had been on the d10 IV for about 1.5-2 hours and they decided to admit him and move us to the pediatric floor.  

The second set of labs were drawn around 5 am on Wednesday morning and came back around 9:30 am showing that cpk levels had dropped from 864 to 591.  They were moving in the right direction, but not as fast as I had hoped.  Owen was acting better, but was still pretty lethargic (which is not typical for him after a round of d10....he is usually bouncing off the walls).  At this point, I called and consulted with our doctors/nutritionist at ACH, who ended up recommending another round of d10.

 Because the cpk levels were slow to normalize and Owen had the flu (which is unpredictable in length) and Owen still wasn't eating, they decided to keep us for another night.  The third set of labs came back around 8:30pm on Wednesday night and showed cpk levels to be 456.  This was disappointing news and concerned Josh and I.  We had been in the hospital Owen several other times due to illness and VLCAD, but it had always only taken one round of d10 to get his cpk levels normalized and Owen back to himself.  So, the goal for Thursday was to get cpk levels closer to normal, to remain fever free, and to get Owen to eat!  Josh showed up on Thursday morning with one of everything off the Chick-fil-a breakfast menu...seriously!  Owen hadn't eaten in 2 days, so counting fat grams was out the window!  With all those yummy options...he only ate 2 hashbrown rounds and a bite of a mini chicken biscuit :(

Lovin' his balloons from Nutriment and Children's Therapy TEAM

After a not so big breakfast on Thursday, Owen slept while we waited on Dr. Lovell to round and discuss cpk levels and discharge.  After talking with Dr. Lovell and consulting with our doctors at ACH, we decided to stay for the rest of the day, wait on lab results, monitor Owen's behavior, and try to get him to eat.  If Owen ate and cpk levels continued to normalize we would go home that night.

Owen ate half of a turkey sandwich and some applesauce for lunch.  Yay!  AND...The fourth set of labs came back with ckp levels down to 311....

We're going home!!

We continue to learn about VLCAD and how it effects Owen with each experience.  It's so hard to know what to do and when to do it.  Each normal childhood illness affects him differently and we try to sick to the guidelines of "if he's eating well and drinking his formula, he's okay", but sometimes that's not the case.  We don't want to run to the hospital every time he gets sick...and subject him all the blood draws, IVs, etc, but we also don't want to wait too long and let him get to the point that his body is breaking down muscle for energy.  Owen is still the only child in Arkansas with VLCAD, so this will continue to be a learning experience for all involved....but hopefully as Owen gets older, he will be able to understand his own body more and be able to tell us what his experiencing.  

Genetics Appointment

Owen had a follow up genetics appointment a few weeks ago.  We're continuing to do these appointments at the Lowell clinic every 3-6 months.  Our geneticist, Dr. Kahler, is still not traveling to Lowell so we saw Dr. Garnica again.  

Appointment Stats:

Weight - 33 lbs 1 oz 

Height - 37 inches tall

Head Circumference - 30

The appointment went as usual...we met with the geneticist, a nutritionist, and then had labs drawn.  Dr. Garnica was a little concerned about Owen's labs from August.  Apparently two of his labs were high, but only slightly too high.  This was news to us and kinda frustrating since the report we got in August was that everything looked good.  After talking with our crew at ACH, it was explained that the increase could have been due to a number of things and that they weren't too concerned because they were only 1-2 points too high....which made us feel a lot better.  The lab results came back about 1.5 weeks after the appointment and both were 30 points less than the labs in August, indicating that his liver is functioning normally...or "normal" for Owen.  Yay!

Josh and I have been a little concerned about Owen's excessive sweating, so we mentioned it to Dr. Garnica.  Owen frequently wakes up with a large circle of sweat on his pillow and completely drenched.  He also seems to sweat excessively, to the point that his head is soaked, with minimal activity.  This is not necessarily a new thing, but we've noticed it a lot more lately and thought it was worth mentioning.  So....after some thought, Dr. Garnica seems to think that Owen might be hypoglycemic during these times of excessive sweating...and now wants us to start checking his blood sugar during the night for a few weeks.  They sent us home with everything we need....but we have not started the testing.  Everything with Owen is kind of an experiment.  He's still the only one is Arkansas with VLCAD and Dr. Kahler is the only geneticist in Arkansas that has seen VLCAD patients other than Owen.  So...we decided to hold off on testing until we were able to talk everything over with Dr. Kahler.  We just really don't want to put Owen through anything else, unless it is completely necessary.  Hopefully Dr. Kahler will get back with us in the next week or so and have a plan for us moving forward.  

Genetics Appointment

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.

ACH Appointment

Owen had a follow up appointment with his geneticist and nutritionist at Arkansas Children's Hospital yesterday. The appointment was at 12:00 so headed out around 8:00. The trip down was pretty uneventful...Owen was content with eating breakfast and watching Toy Story!

We always plan Owen's appointments around eating at Holly's Country Cooking in Conway. It's the best "home cookin" but they're only open for lunch on the weekdays, so Owen's appointments are the only time we ever get a chance to stop in. The hash brown casserole is our absolute favorite!! We keep thinking that sometime in the near future...Owen will put his foot down and end our eating at Holly's. There is nothing on the menu (other than the roll) that is low fat. We always plan ahead for Owen...like this time we brought him a Lunchable (which he enjoyed)...but I know there's going to come a time when a "lunchable" isn't going to cut! But until then, we'll continue to enjoy Holly's!

Josh's plate....

Owen's plate...

My plate....

After Holly's, we headed to the appointment completely stuffed. The Doctors probably think something is wrong with Josh and I because we always arrive miserable full! Ha!

So here's the recap on Owen: He continues to be followed by a geneticist and nutritionist at ACH to manage his VLCAD. VLCAD is a rare metabolic disorder that inhibits Owen's body from processing long-chain fats (the fat that's in everything we eat). Owen is still the only child in Arkansas to be diagnosed with VLCAD, but our doctors are working with Dr. Vockley and his nutritionist (the gurus on VLCAD) who see ~15 kids from all over the US.

We had our last appointment in Sept 2010, where we decided to start challenging Owen's ability to process fat. At the time he was allowed around 16 grams of fat per day, so we (meaning our nutritionist and Dr. Vockley's nutritionist) decided to jump to 21 grams of fat per day for 4 weeks. We had lab draw in Nov. 2010 and the results were good! He's levels all stayed the same indicating the his body could process 21 grams of fat without any problems.

After the Nov lab results, we increased Owen's fat to 27 grams per day! However, we hit the terrible two's and had a really hard time getting Owen to eat, much less eat exactly 27 grams per day. We tried everything from giving him 2% milk, cookies, cheese, etc. to get the kid to eat enough fat for "true" lab results. Needless to say, we were unsuccessful. So, we ended up having the labs drawn in Feb 2011 after Owen decided to start eating better and we felt that we had actually feed him 27 grams per day for 4 weeks.

Here's where the bad news comes in...The lab results from Feb 2011 were not good, they showed an increase in levels, indicating that Owen's body was unable to tolerate/process 27 grams per day. C14 went from .15 to .22 and C14:1 went from .11 to .35. I know that doesn't seem like much, but Owen's levels are high to begin with so we're not wanting them to increase at all. We received these results 4 wks ago and dropped Owen down to 22-24 grams of fat per day. Labs were taken yesterday, but we won't know the results for another 2 weeks.

We know that Owen will always have VLCAD and always be on a low-fat diet....Our goal is just to find the "magic number" of fat grams that work for him! If that's 21...great! If it's 24..great! We just want to know! We've come a long ways from the 2 grams a day that we started with....at least now he can eat something more than grilled chicken!

Watching Toy Story 3 with Daddy while we waited...

Owen weighed in at 31 lbs and was 2 ft 8 inches tall. His head circumference was 20.5 inches.

At 4 months old, Owen had an ECHO that showed a small hole in his heart called an ASD. It's a fairly common heart defect that should close within the first year of life. We haven't had a follow up ECHO to determine if the ASD closed, so Dr. Kahler is consulting with the cardiologist about scheduling an ECHO at the Lowell clinic. We are not concerned about this, just want confirmation that it closed.

The lab draws were very traumatic! After 2 sticks and what seemed like an eternity, Owen completely lost it. It was so sad. It took 4 of us to hold him down and he kept crying and saying "please stop". It just broke my heart! The poor guy wouldn't even use his left arm for about an hour. After all that...we decided he needed a treat. So we went to the toy store and to Orange Leaf for ice cream!

I had to put this pic on here just because he's playing with a doll house....and you know how that makes his daddy feel. Ha!

making a wish....

Chocolate, strawberry, and cheesecake yogurt with strawberries...Yum! Ice Cream makes everything better!!

Please pray for good lab results and continued good health for Owen!

ACH Appointment...

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!

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 Friday...so 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.

Arkansas Children's Hospital

Owen had a rough week last week. He got shots last Tuesday morning and by that night he was running fever and throwing up. We just attributed it to the shots and thought he would improve by the next day. But he continued to have fever on Wednesday and the vomiting episodes increased. He also became really fussy, to the point that there was nothing we could do to console him. So on Thursday, Josh took him to the doctor to make sure he didn't have an ear infection or teething issues. We just wanted to make sure that it wasn't a "normal" baby issue. To make a long story short...after insignificant findings, our doctor called Arkansas Children's Hospital and the geneticist on call wanted us to be admitted to the hospital immediately. So we went to Northwest Hospital in Springdale to be hooked up to a 10 % dextrose IV and then air lifted to ACH.

preparing for his flight to ACH

getting ready for his first plane ride..

during the flight...

Everything happened so fast we didn't really have time to think about anything. We didn't know if a parent would be allowed to ride with Owen on the flight to ACH so Josh jumped in the car and headed down to Little Rock just in case. We didn't want Owen to arrive at ACH and be all alone. However, they ended up bringing the plane instead of the helicopter so there was enough room for me to ride. Owen did well for his first time on an airplane...he slept for most of the trip. We arrived at the hospital and were greeted by daddy, GiGi, Papa Bart, Natalye, Kristina, and Sandy.

getting checked out..

snoozing with mommy...

Owen decided to stay awake

and watch "Bolt" at 4 am

snoozing during the day...

ACH is a great hospital; they are very attentive to their patients. After our experience at Washington Regional for Owen's bilateral hernia repair, we were very greatful to be ACH. With Owen's rare diagnosis, there are very few doctors that know how to treat him. Even at ACH, ther are only three geneticist that are familiar with his diagnosis. The first nurse I talked to said "I googled his diagnosis and I couldn't find very much". Ha! That didn't make us feel comfortable by any means.

hanging out with Daddy...

talking with Dr. Kahler (our geneticist)

hanging out with GiGi

The great thing about being at ACH is that we were overseen by our geneticist, Dr. Kahler. In addition to getting the 10% dextrose, they ran alot of lab work, did an EKG and and ECHO. They're still not sure what caused Owen to throw up, but their main concern was how Owen's body was going to respond to the illness. Baby's with his condition tend to go down hill really fast, so they wanted to stay on top of things.

just lounging...

Playing with his teddy bear

from Children's Therapy TEAM

Playing with Beema and GiGi

Owen is doing much better and is back to acting like Owen! We are very thankful for the care that we recieved from ACH. According to Dr. Kahler, this is something that we may continue to go through until we completely understand how Owen is going to respond to illnesses. There were some minor abnormalities noted in our EKG so we had a follow up EKG today and should know the results in the next few days. We have another appointment setup with Dr. Kahler on August 10th to find out more about Owen's condition. For now we will continue to montior Owen closely and pray that we will provide him with the best care. Thank you so much for all of your prayers.