Our family's journey through life

Two weeks ago we  left the hospital  with a  our sweet little  boy.Six days after he endured his fourth  and longest (8hrs) surgery.On bed rest for the first three days post  op, a not so comfortable chest tube for three days an epidural,morphine, Tylenol round the clock.Bed rest. A Jack Pratt drain. Sleepless nights,watching animated show after another, ice cream,wagon rides,bubbles,coloring. We were saying good bye to the hospital. Again.Days before we anticipated.  We were stepping foot off hospital grounds with our sweet (stronger than most adults I know) warrior child wearing a lovely hospital gown courtesy of Dorenbecker Children's hospital. His left arm still in a sling. Holding his daddy's hand with his wright Owain not so gracefully jumped out of the elevator JP and all. Yes! He jumped!

 Blessed, we are.

 At home Owain continues to amaze us.After only being home for two days spending his day watching our own animated cartoon shows with Slinky and Nemo in the comfort of our living room.

We spoke with Dr.L (plastic surgeon). Great Doc. He was pleased with how little of an out put his new friend JP was putting out. He told us to come into the office that very day!It was time to say goodbye to good old JP. A week earlier than we anticipated .Owain wasn't to happy about the quick yet unpleasant process of saying goodbye to JP.He recovered quickly with some Mickey Mouse stickers.

Our boy continues to amaze us!
Blessed,We are!

Having JP out of the picture Owain continued to recover remarkably well. He spent less time in front of the t.v. Having the energy to play he helped daddy build a tent out of his old tapestry from his college days.They hid from mommy snacking on some tasty pepporin and cheese.

Blessed,We are!

By the sixth day of being home Owain no longer needed his stink'in sling.A week earlier than we anticipated.  He was back to feeling like his young energetic self.Running,jumping doing tricks (twirling while jumping) Flying like a bird. He no longer needed pain medication.He was feeling pretty darn good. Better than I did after my C-section. Truly amazing.

Amazing.That's our boy!

Ten days after leaving the hospital Owain was well enough to play at a neighborhood park. With Friends.

Our boy continues to amaze us!
Blessed, We are!

Thankfully for days like these.

Six weeks ago today Owain had his routine x-ray.

Three days later Dr.Z (surgeon) called to inform us that his x-ray looks light he might have re herniated  again!

He put a referral  for an ultra sound.

Two weeks later he finally had an ultra-sound which ultimately led to a CT scan the next day.

The Friday afternoon of the CT scan Dr.Z called to inform us yes Owain has had another recurrence.Early next      week he was going to ask the senior surgeon his input and what other options are there?

We waited and waited and waited and waited until I finally called Dr.Z office last Thursday. He was still waiting to hear from the Senior surgeon.

At this point I am super annoyed and frustrated. It's been six weeks since that x-ray, a month since the CT scan and we are still waiting for a game plan and a surgery date! The longer we wait the more concerned I am that Owain's situation will only get worse.It could be life threatening.Thankfully Owain is still doing well considering.
Making lots of BM's (bowel movement) very important when some of your bowl is poking through your diaphragm. He has been whinier than usual. I don't know if it's just teeth,being two or if his uncomfortable because he has some of his bowel poking through! Do you understand where I am coming from? or am I just not being patient enough? I feel like for the last six weeks I have been pretty darn patient but it's time to get this ball rolling before it becomes a life threatening situation!

Happy First Birthday Stellan! 
Most of you in the blog world know who Mckmama is and her youngest Stellan. They really need our prayers right now as Stellan is spending his birthday in the hospital.

                                                                                                             
I realize it has been awhile since I posted about all of our CDH warriors.Sorry for being a blog slacker. Even though you may not see a post on this blog. Everyday morning,noon and night I am praying for all of our CDH warriors.

Jaime has had quite the  CDH roller coaster ride. Anyone that has reluctantly  been on the CDH roller coaster ride knows there are many bumps before you get to a slow steady track.Jaime just had a recurrence. He had another repair surgery this past Monday and is having a very tough recovery.Please pray for sweet little warrior Jaime,his parents Sheryl,Tom and big brother Jared.You can read more about Jaime and his recovery here. Stop by say "hello" give them a virtual (((hug))). I know first hand when you have a child sick in the hospital reading comments on your blog of encouragement really can lift your spirits up.

Andrew is having a really tough time coming off of ECMO (lung/heart by pass machine) Please pray that Andrew's little body is getting plenty of rest while on ECMO so when the time comes to being weaned his body will be strong enough that he will no longer need ECMO.Keep his parents Gene and Becky in your prayers during this difficult time.You can visit Andrew's blog here.Thank you.


Chase is in a similar situation as Andrew.Tomorrow the Doctors are going to try and wean him off of ECMO again. Please pray that they will be successful this time. Keep his parent Brian and Arah in your prayers.Thank you.


Thank You for taking the time and reading about all of our CDH warriors.
Thank You for leaving a comment of encouragement on their blog. It mean more than you could ever imagine. Unless you have been in similar shoes then you understand how much it touches your heart to know people all over the world are praying for your baby. It truly is amazing what the power of prayer can do. 

While your praying say a little big prayer for all the CDH babies that are preparing for battle against CDH.Pray for their families as they are  about to board the reluctant  CDH roller coaster ride.
 Thank you thank you thank you

If you have a prayer request or would like me to add your blog on the side bar please let me know.

                                                                                         
Some one brought to my attention that they were unable to leave a comment.Makes perfect sense I was wondering why nobody left comment anymore. My strong witty husband is working on that right now. He is pretty computer savvy I am not.Hopefully the problem will be fixed soon because we like to hear what you have to say!

I just got word the comments are working again! 
Hip hip hooray!
So leave a comment I want to see if it is really  working.and I would love to here from you!


                                                                                           
In Owain news he finally hit the 20lb. mark. This is HUGE! We have been trying to fatten this kid up since day one. For ten months now our goal was to get him to  20lbs and that day has finally arrived. We celebrated. I baked him a cake with sprinkles. We ate the cake he ate the sprinkles. We still have a long way to go with our picky little eater. More on that later.but I am tickled pink that our almost two year old finally weighs 20lb.


Thanks for stopping by!

Especially with how the technology has changed since I was a kid way back when we used old school film cameras. Owain has learned that after I take a picture he can see himself on the little screen of the camera. With that said this is what I get every time I go to take a picture....



Needless to say I have quite a few pictures of him pointing at the camera.

Owain's language has really blossomed over the last few months. One thing that I know has really helped with his language skills is I have been teaching him sign language.

His very first sign was milk,then he started signing more and after a week of signing more he started saying more while signing it.I am so proud of my little man. :-)

Some of the other signs he use are:
thank You
please
all done
phone (he is a little obsessed with cell phones)
diaper

He is also known to say:
momma
dada
kitty cat
meow
bye bye
on
off
up
down
milk
bath

Owain continues to amaze me.
He learns something new each and every day.
I can't wait to see what tomorrow brings!

1.)I love your laugh. It is so easy to get you to laugh all we have to so is sneeze and you think it is the funniest thing ever.

2.)I love watching your mind work while your trying to figure out how something works. I think you have an engineering mind like your daddy.

3.)I love it when you see a kitty cat or a squirrel you "meow" it is probably the cutest meow I have ever heard.

4.)I love your love for vacuums. Anytime you see a vacuum you make your vvvrrrmmm noise. Daddy bought you a vacuum that is just your size and you are so helpful by helping mommy vacuum. You even park your vacuum right next to mommies. :-)

5.)I love that you are very independent.You can easily entertain yourself if mommy and daddy need to get something done.

6.)I love your love for books.Every since you were a few months old you have been fascinated with books.We read to you daily.

7.)I love that your out going spirit. You will go up to any man,women and child and work your charm. You usually give a big smile and wave hello.

8.)I love that you are a momma's boy :-)

9.)I love your jumping skills. You don't actually get yourself up off the ground (yet) but it is so cute the way you swing your hands above your head,bend your knees and then you say "jump" as you through your whole body into a big jump.

10.) I love you for being you!

Happy fifteen months my little man!

If you guessed Strawberry fruit juice Popsicle.
Your absolutely right!

= loads of fun!!!!

The other day Owain and I were on a mission (well I was on a mission he was along for the ride) to find the perfect toy box/toy organizer. Our first stop was Target and it was a succuss! We didn't have to make any other stops because we found the perfect toy organizer!!!

Once we got home now it was our job to put it all together....
Hey this is a pretty cool stick!!! It's bigger than me!!!
Maybe it goes in here?
Checking out my new puzzles that are now nice and organized in my new toy organizer!
And now the finished product....
I think I was a little more excited than Owain to have all his toys organized but he did have fun helping me put it all together. I couldn't ask for a better helper!!!

The other day we decided to give the boy's their very first bath together. They both had a blast splashing around. Owain especially loved playing with the faucet. This was not only Owain's first bath with a buddy but the first time we didn't put him in his rubber duckie bath. He not only enjoyed the faucet but he loved having the freedom to crawl around explore his surrounding. I think it might be time to say goodbye to rubber duckie bath.