4 Months Old!

Owen was 4 months old on Sunday...he's getting so big. We haven't been for his four month check up so we don't know his exact height and weight yet. However, thanks to Josh's aunt, Jeri, we have our own scales at home now...so we can check his weight anytime. At his last weigh in, he tipped the scales at 12 lbs 13.5 oz.

Things you're doing now....

• You're wearing size 1-2 diapers


• You can still fit in you're 0-3 month clothes, but not for too much longer. You've started wearing a few of you're 3 month outfits


• You started a new formula called Enfaport...you eat about 3.5 oz every 3-4 hours


• You're still sleeping in your pac-n-play in mommy and daddy's room


• You love sleeping on your tummy


• You've rolled over from your tummy to your back a few times. You did this for the first time with your Aunt Anna


• You really like playing with your toys... the cow and dinosaur are by far your favorites


• You've laughed out loud a few times...but you make us work really hard for those giggles


• You smile at us all the time...it just melts our hearts


• You really like your exersaucer...you've figured out the buttons that play music and love to push them until you're completely exhausted (really, you have fallen asleep sitting up in that thing)


• You love music...Baby Einstein and Veggie Tales are your favorite


• You're drooling ALL the time


• You still LOVE your paci


• You love to eat your hands...you can almost get your whole fist in your mouth, and sometimes prefer them to your paci


• You LOVE bathtime...you splash the whole time


• You coo all the time...we have to keep your paci in at church to keep quite


• You love being outside


• You've started riding in your stroller like a big boy


• You love to stare at the writing/print on mommy and daddy's T-shirts...you stare at it forever and try very hard to grab it

Owen is doing much better. We've continued to have some vomiting issues, so we've been trying to find a good balance between his feeding schedule and the amount of formula he's taking in. He also started on reflux meds last week, which seem to be helping a little. We have an appointment at ACH on Aug 10th, so hopefully we'll get some questions answered. We also plan to get an appointment scheduled with a GI specialist that can address some of Owen's digestive issues. Please continue to pray for Owen's health and for knowledge about his diagnosis.

Concert in the Park..

One of our favorite things about the summer is going to concerts at Gulley Park. Owen really loves being outside and he also enjoys music...so he's a happy little guy when it comes to concerts in the park. This week Aunt Anna, Lindsey, and Charley joined us...We had a great time!

Family Pic

Honey loving Aunt Anna's attention..

This is fun...

Owen learning a few things from Charley...

Photoshoot

Owen had a pretty good week. He had a few issues with keeping his bottles down, but nothing like last week. We've adjusted his feeding schedule and he seems to be doing better. We've also started the new formula, so hopefully all of our feeding issues will be resolved. Thanks for all your prays!

These are some pictures that we took for Father's Day and framed for Papa Joe and Papa Bart. They loved the silly ones with his tounge out and the pouty lip! Just thought I would share...

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.

Shots..

Owen got his 3 month shots today and he was not happy about it! We are spreading out all of Owen's vaccinations, so instead of just getting shots at his normal check-ups..he has to go once a month to see the nurse and get shots. The positive side is that he doesn't have to get so many shots at one time.

He was in a great mood this morning. He was cooing and smiling as he laid there waiting on the nurse...he obviously didn't know what was coming. He weighed in today at 12lbs 6oz and was 24 inches long. I had the nurse weigh him twice just to make sure the scales were correct. He's gotten so heavy...we were all betting that he weighed at least 13.5lbs.

Owen before the shots...

getting the shots....

that night after the shots...

With his last set of shots he was really fussy for 2 days, so I thought I would try to help by giving him Tylenol right before his appointment. It seemed to help a little...He slept a little more today than usual, but he still had a low fever. He has also been a little more fussy than usual and just not his happy self. We really hate to see him like this...hopefully he'll feel better tomorrow.

We received Owen's DNA results a couple of weeks ago. They were positive for the Very Long Chain Fatty Acid Oxidation Disorder (VLCAD). These are not the results we were hoping for, but now we're just focusing on learning everything there is to know about the disorder and getting Owen the best help we can. Apparently, Owen in the only child in Arkansas with this specific disorder, so the we (including the doctors) are all learning as we go.

For now, we are only modifying his diet. He is on a special formula (Portagen) that is made up of mostly medium chain fatty acids. However, this is an adult formula so it's been hard on his little tummy. The good news is that they just came out with an infant formula that we will be able to start in the few weeks. Yea! We are still feeding him every three hours during the day, but have moved to every 4 hours at night. That extra hour at night is amazing! As he gets older, we will be able to adjust the time between feedings.

We are still waiting on the skin biopsy results. We should know something by the end of this month. According to the doctors, the skin biopsy will confirm the diagnosis and show us how the long chain fatty acids are affecting his organs (specifically his liver, heart, and brain). We have another appointment at Arkansas Children's Hospital on August 10th.

Owen looks and acts like a normal 3 month old. If you saw him you would never know that anything was wrong. We pray that he continues to be a happy and healthy little boy. He is the love of our lives!

Happy 4th of July!!

Our 4th of July was pretty low key. We had planned on spending the day at the pool, but the weather did not cooporate. So instead of laying out, we stayed in for a photoshoot to document Owen's first 4th of July. That night we grilled out and enjoyed the fireworks from our back porch. I think it will be a few years before Owen starts to enjoy the fireworks...He slept through most of them this year.

Summer Nights

We've been taking advantage of the nice summer nights with a family stroll around the neighborhood. This week we decided to let Owen ride in the stroller like a "big boy". He loved it! He was kicking his feet and cooing the whole time!

"What's going on?"

Honey has finally learned

to walk beside the stroller

"this is fun"