Razorbacks...

After Miracle League on Saturday, we picked up Owen and headed out to the Red White Game. We missed all the Razorfest activities, but Owen had just as much fun playing with Charley during the game. We sat in our friend Hannah's suite so the kids were free to run around but were also contained! It was great...definitely the best way to do Razorback football with kids!

Owen and Josh before the game.

The sunglasses are Owen's new obsession...he asks to wear them everyday!

It looks like they're actually watching the game...

Our kids are definitely becoming little Razorback fans! First the Red White game and then the Razorback baseball game. After a little Chick-fil-a, they were ready to run wild at the baseball game...and that they did!! They literally ran/chased each other the entire game! It so much fun to watch our children grow up together!

Miracle League

We kicked off the spring season of Miracle League on Saturday! It's baseball for kids with special needs and a good time for all involved!! Saturday morning was a lot colder than expected (around 38 degrees) so not all the players came out to play. We improvised with coats, gloves, hats, and blankets...and the sun finally came out during the last game. The guys from the Harbor Baseball Team were buddies with all the players and everyone had a blast!

The Mascot...

One on my favorite little guys came out to cheer

Lena and Lek with their buddies...

Batter up...

Singing "Take Me Out to the Ballgame" at the end of the game...

This little guy loved batting so much that he decided to practice a little while he was in the outfield...

Brad Reed with KNWA pitching...

And he scores...

getting ready to knock one out of the park...

everyone chasing after the ball...

Baseball

We headed out the the Razorback baseball game Sunday afternoon. They had an awesome game on Saturday against LSU, so we decided go check it out....

We decided to sit in the outfield so Owen would be able to run around and play. I think it was the best decision because he was a wild man! He started with sitting in his chair and cheering a little when the crowd cheered, but as we crept more and more into nap time... he was on the move!

Owen really seemed to enjoy the game and liked pointing out all the Razorbacks. We went to a few games last season, but I'm not sure he even realized he was at a baseball game. I think we'll definitely be attending a few more games this season.

Owen was so tired after the game that he fell asleep about 5 minutes into our drive home!

99 Balloons Retreat...

The 1st annual 99 Balloons retreat was this past Friday and Saturday. The location...the middle of no where! It was about 30 minutes from Marshall, AR, but I seriously have no idea what town we were in...

After a lot of dirt roads, we made it to our destination and were greeted by Matt, Ginny, and Becky. We weren't sure what to expect next...other than we needed 4WD to make it the rest of the way!

The view on the way down!

Ginny's family was very generous and let us use their cabin for the weekend retreat. It was so relaxing and peaceful! We had no cell phone service and didn't turn on the TV the whole time...it was actually really nice to be disconnected from technology...at least for a short period.

The cabin was right on Big Creek with awesome views!

We spent a majority of the weekend exploring the outdoors on 4 wheelers. I was just a passenger the first day, but by Saturday I was ready to take over at the wheel! And I absolutely loved it! So...Josh became the passenger for the rest of the day.

Some of the guys getting ready to grill out...

Roasting s'mores by the camp fire...

Ross and Josh heading out on an adventure without the girls...

This was one of my favorite spots....hammocks and swings on a screened in porch, it doesn't get much more relaxing than that

my new favorite thing...

Josh taught me how to skip rocks on Saturday afternoon. I probably wasn't the best student, but managed to improve a little....I don't think I could have been much worse! Ha! Josh was definitely a lot better at it than me...his would go forever and my best was just 3 skips.

Josh and I as we were getting ready to leave on Saturday afternoon....

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!