Our family's journey through life

I am sitting here in sea horse room 22(the same room we were in 16 months ago) listening to the buzzing of the machines.The drip of the IV. Finding Nemo playing  in the back ground for the third time today. Owain is in and out concious. He currently has an epidural,morphine and Tylenol to help with the pain. His surgery yesterday lasted eight long  hours and it was pretty invasive. Owain remained stable through it all! Everything went as planned. I don't have the energy to explain in great detail of what exactly was done I will save that for later.

Right now our number one goal is managing his pain.This afternoon seems to be doing better than last night. Last night was pure HELL. None of us slept longer than ten minutes at a time. The hardest part right now is not being able to hold him(he has been put on bed  to comfort him when he is having fits of rage because his left arm is in a sling,he has two chest tubes and he hates seeing the IV's in his hands. My heart aches for him. I hate seeing him go through all this AGAIN. What brings him comfort beside all the pain medication is his momma,daddy and grandma's caress of his sweet little swollen face(during surgery they pumped him full of fluids which caused him to swell). Oh and Nemo. Does anyone know where I could find a stuffed Nemo?

By the look of things we are going to be here for a while. Sea horse room 22 is our home for now. Thank you to all of you for keeping our little man in your thoughts and prayers. Reading all of the comments on facebook have been helping us get through this bump in the road.

Much love to all of you!

SHARE


-Verb
1. to divide and distribute in shares; apportion.


2. to use, participate in, enjoy, receive, etc., jointly: The two chemists shared the Nobel prize.

We finally have a date and a game plan for Owain's surgery.Hip hip hooray. Not hip hip hooray Owain has to have a fourth surgery.It would be fantastic if our little man did not have yet another recurrence but the reality is he needs to have another surgery. So Hip hip hooray finally a game plan and a date.

Tuesday March 30 a team of Doctors will be working together to fix O's recurrence. Dr. Z  Owain's main surgeon since day one. He has  been their through every bump in the road. We love him and are very thankful he will be in the OR (operating room). Dr.S we have not had the pleasure of meeting him yet.I do know he is one of the best. He has been a pediatric surgeon for over twenty five years. The third surgeon  being brought into the equation we met with  him this morning. Dr.L he is a plastic re-constructive and aesthetic surgeon. Your probably wondering why he is being brought into the picture. That is where I bring you to plan A. Remember a few post back I mentioned one of the possibilities other than gore tex is latissimus dorsi flap. Well that is exactly what Dr.L's job will be. He has done hundred's of these type of surgeries but O's case will be a first for him. He is very confident that he is the right man for the job. We are too. Their is always a plan B and C but  quite frankly I am to tired to explain all this medical lingo.

I am happy that their is finally a game plan..O is still showing no sign of discomfort. The scary thing is if he didn't have that x ray two months ago we still would not have a clue that part of his large bowel is poking through his gore tex patch.We are so thankful for that x ray and for his team of Doctors working together to come up with a better solutions. I am at peace with this next big surgery. Hoping and praying that this one will be  his last and final surgery. Only time will tell.

We have been busy enjoying every moment  not being in the hospital. Keeping things as normal as possible. Going to story time at our local library,play dates hanging out at home playing in the sand box or park when the weather permits. It's been nice. I am so glad that I haven't kept O in lock down. Which was my first gut reaction two months ago. We decide the best thing for O is to keep our normal routine. Of course my fear is him getting sick before his surgery. Knock on wood. .We are frequent hand washers. He has been 100% healthy.We are so thankful.
Can you guess where we ventured off to this past Sunday that had our little man jumping in excitement?

Earlier this afternoon Owain decided he no longer needed his old stink'in crib by nearly giving his momma a heart attack when he decided it would be a great idea to climb out of his crib (a first). I walked in on him with big crocodile tears standing trying to get back into his crib soothe and all.I examined him, starting with his head ending with his cute little toes. Everything looked intact just as it did before his nap. He was just a little shaken up(me too).So just like that the decision was made. It is time to turn his crib into a big boy bed. For the last couple of months hubs and I have been contemplating when would be the right time  for this big milestone.To be perfectly honest neither one of us haven't been ready.Until today. Instead of taking a nap Owain got right to work with daddy transforming his crib into a BIG BOY BED!
Oh boy the excitement in his eyes  while he worked side by side with his hero (daddy). He twirled in circles as he watched the transformation. Crib no longer he now has  his very own BIG BOY BED. Just like all of his  little friends. My baby is officially a big boy. Sniff Sniff.
Hubs and I were curious to see how bed time would go.After twenty minutes I walked in on this....
My big boy completely  in dream land. Probably dreaming about trains,,fire trucks or driving a garbage truck.
My big boy sleeping peacefully in his BIG BOY BED. Sniff Sniff. I will be ok. I still have a few years before he goes off to school. Sigh.I'll be honest I had tears in my eyes while I watched the transformation.Just like that my baby is now officially a big boy.Sniff Sniff.
He will always be my baby even when he moves out goes to college,gets married and has children of his own. Sigh. Is it just me but does time fly by extremely  fast when you have a children?

Play at the indoor playground,paint with sponges,laundry,read books,build a bridge out of blocks,shake my booty while Owain plays the keyboard,let my little man get creativity with scissors,glitter and glue (wait until you see what he created),sweep,play in the sand box,called his Doctors office left a message,unload the dish washer,flash cards,answer a call from his Doctors office (more on that later),waste some time on Facebook while my little man should be sleeping,check my email,unload the dish washer,color with wonder markers,make pan cakes for dinner,feed the cats,reload the dish washer,clean up pee off the floor,have bath time not once but twice,scrub Owain's head repeatedly but gently to remove all most of the sand,pick up blocks all  in a days work.

I love my job being Owain's momma. I couldn't think of anything else I would rather do than watch my little man grow and learn.Before Owain was born my job was pretty similar. I worked in child care for fifteen years.watching,teaching,playing and loving other peoples children. I  loved every minute of it.One of my favorite age groups to work with is two through five when there little big imaginations are in full swing and they say the funniest things and sometime be brutally honest.Through out my career I kept a journal and wrote down every clever thing they said. Here are some of my favorites.....

wavy blonde hair blue eyed four year old Marissa runs up to me in a panic "Amber,Amber we have to call my mom I left my brain at home!" She was dead series. I had to calm her and reassure her that her brain was still safely inside her cute little head.

Sweet little Emma 21/2 said "when I was a baby I was in my mom's  tummy and I popped out of her butt!"

"Only grown ups can eat chocolate before bed time"
Caleb 4 yrs old.

"I always feel like I'm 41/2 even though I'm 5.I just don't feel like I am old."
Sophia 5yrs old.

"when I grow up I want to be a teenager" Today Hunter is only a couple years away from her aspiration.
Hunter 5yrs old

"When I grow up I want to be piglet"
Aspen 3 yrs old

"I am skipping like a tornado"
Jack 2yrs old.

"Lady bugs just don't taste very good"
Mallory 3 yrs' old

" I can't go to jail because they don't put princess in jail."
Sophie 4 yrs old.

"I wanna get a homawk"
Gabe 5 yrs old.

"kid rock baby oh ya!"
Maclean 3yrs old.

"batman wears pull ups"
Sean 2 yrs old

"My dreams are in the air"
Emily 3 yrs old.

"I am going to the moon to eat pepper sauce"
Clair 2 yrs old.

and my all time favorite from my  five year old  nephew Isaiah

"Amber your tummy is only a little bit fat,my mom's is a lot fat!"

I am so happy that I kept this journal. It's fun to look back on and get a good laugh. Hope you enjoyed it. What are some of the things your kids have said?

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!