March for Babies

I'm happy to say that myself and a number of other Omphalocele moms are walking in the Fort Worth March for Babies event by the March of Dimes.

Our team is called Team Omphalocele, and we're walking to spread awareness.  

To help support our walk, we have t-shirts for sale through booster:
Buy T-shirts here!

We also have a team page that can be visited, and my personal page, where secure donations can be made.  Feel free to share all with family and friends! 

Team Omphalocele team page

My personal March for Babies page

Evan says "Thank You!" 

 

Fog

I think I'm finally beginning to see the fog that has been over me for so long starting to lift. 

I have struggled so much with anxiety and depression and (still) the traumas of Evan's birth and hospitalization.  

But spring is coming.  Spring always means new beginnings to me.  Kayla will a year old in April.  

And then it will be summer and we will celebrate 2 years without a trach and Evan's 3rd birthday. 

He's doing great. Really great. 

I worry and fret and I am trying to find a school that does ABA (applied behavior analysis) therapy to enroll him in when he's 3. 

Some days we struggle.  When he's stuck inside, my sensory-seeking child desperately needs activity, movement, sights and sounds.  Lots of it.

So he has a trampoline inside now. 

Because he killed his bed jumping in it for hours before going to sleep. 

We also got a zoo membership at the Fort Worth zoo. We have been graced with gorgeous weather so we've been going every day we can. 

It's been very fun and occupies him very well. 

Here's a timeline of upcoming life events: 

April 7th- doctors visit, and hopefully we'll get the all-clear to remove Evan's gbutton. 

April 12th- March for Babies walk for TEAM OMPHALOCELE !  

http://www.marchforbabies.org/mdstorey83&bt=24 

April 30th- Kayla's first birthday! 

May 5th- Developmental Pediatrician follow up. 

#TeamOmphalocele

#MarchforBabies

Omphalocele Awareness Day 2014

Once again, it is Omphalocele Awareness Day.  

Ever since joining a wonderful group of fellow Omphalocele moms, I have seen this awareness movement grow exponentially.  

It's a beautiful sight to behold. 

We have a website this year, created by a fabulous Omphalocele adult:

http://omphaloceleawareness.webs.com/

Other moms are working toward forming a non-profit.  

I will be walking with a team of other moms and supporters in the Dallas/Fort Worth area on April 12th for the March for Babies: 

http://www.marchforbabies.org/team/t2110991

We also have a beautiful tribute video to Omphalocele Awareness here: 

http://youtu.be/nNU7C_3gRjc

All of this is in an effort to being awareness to so many different people. 

There are those in the medical field that are not as aware of the various treatments for Omphaloceles, which can lead to mismanagement.  

I've heard so many heart-wrenching stories about mothers who in the same breath they first hear the word "Omphalocele" they hear the word "termination".  

I personally had a very positive experience, but it seems sometimes that for every doctor that breaks the news gently and compassionately and presents all the options available without prejudice or leanings either way, there are dozens that insist termination is the best option or fail to give a realistic outcome.  

Support is needed for mothers going through their journey into a new world of specialists, surgeons, NICU, and therapists.  It is terrifying to learn your unborn baby has anything going on medically..... You hear this word that you've never even heard before, your heart is pounding and the tears begin to flow. 

You can't know in that moment, that online there is a group called MOOs- Mothers of Omphaloceles, and there are 900+ members all over the world, ranging from mothers that just got a diagnosis a week ago, to Omphalocele survivors with children of their own. There, you can share your dreams and fears for your beautiful baby with other mothers. You can grieve, ask questions and build knowledge and contacts.  You can see the treatments that have worked and the ones that do not. 

Mothers of Omphalocele angels are online too, sharing their stories and experiences.  

Each and every story we share brings us closer to answers. 

Because Omphaloceles are relatively rare, it seems that there has been very little research done.  

What research we see published and accepted by the medical community can be outdated and not as effective as some of the treatments we've seen in our support group work time and again. 

This is another reason for spreading awareness. 

We, as mothers, want to know what went WRONG. We don't want to see others going through this, and if we can keep it from happening, we want to everything we can. 

We also want to see more information about treatment of Omphaloceles be made available to every medical professional involved. 

So many doctors, nurses, and therapists have told me that Evan was their first Omphalocele baby to work with. 

Omphaloceles provide a unique challenge in that when the organs develop outside the abdomen, the chest cavity and abdomen do not necessarily have enough room to fit "everything back in" without causing undue pressure. 

Complications arise, involving the lungs and heart.  The babies may suffer from a number of issues involving their heart, lungs, and digestive systems. 

 

Delays due to lengthy hospitalization, lack of tummy time, sensory problems, feeding issues, chronic respiratory problems..... All this can affect a child with an Omphalocele. 

It's not all doom and gloom, of course. 

We have beautiful babies.  Sometimes the outcome is the very best anyone could hope for. 

As mothers, we simply want the very best for our children. This includes care from doctors and medical staff, from their peers growing up, and from other parents.  

I hope that next year we will have even better news to report.  I hope to see more people embracing a state of awareness.  

#omphaloceleawareness

#omphaloceleawarenessday

#omphalocele

Still life?

You know all those "Still Life" paintings that were painted with artfully placed bowls and fruit and such? 

Yeah. 

Not happening if you have kids. 

I can barely catch something with a camera. 

Yesterday I made a plate of pancakes for lunch (breakfast/lunch) and put Kayla in her high chair. I put the plate down on the table, turned my back for a second to address an issue Evan was having involving a toy and a too-small hole, and turned to find my plate of pancakes had magically slid onto Kayla's high chair tray. 

Thankfully, it was a paper plate (yeah, I got class).  Taking that towering plate of pancakes away from my daughter was like trying to convince a cat to go swimming. I swear her hair stood on end. 

And Evan was all like:

Kidding. I just love that picture. 

I am sleep deprived thanks to the usual Mommy routine.  Kayla has had some issues the past 4 nights. 

She's mocking me here. 

In other news, Evan gained 4 pounds in just a month. All without using his gbutton at all. 

I'm exhausted for multiple reasons, and chasing him around trying to shove food into his mouth is one of them. 

This is reason #80

See how I can't even take an un-blurry pic?  These kids are always moving. 

It took me 30 tries to get this picture. Evan has pudding on his shirt. 

Who needs a "Still Life" when you got a kid that is able to run forward, turn around and tell me to "go get up" (his version of "hurry up") 

I'll take that any day, despite my obvious exhaustion. 

Goodbye 2013

Goodbye 2013!  You brought many good things and many difficulties. 

Here's hoping for a smoother ride in 2014.  

In the meantime, look how cute my kids were at Christmas. 

It's the most wonderful time of the year

It's the most wonderful time of the year! 

At least that's what the Christmas songs would have you believe. I do enjoy Christmas, though. 

I do feel that this Christmas season has been dampened a bit by circumstances. 

There's not a lot going on in regards to Christmas cheer. 

Don't get me wrong, we've got our tree up, and took the pictures of the kids in Santa hats. 

They were adorable. 

I've been baking cookies like crazy, and though I've found a form of therapy in that task, I find my cookie decorating skills sadly wanting. 

Tasty, tasty ugly cookies warm from the oven.  Mmmmmmm. 

We've had a few interesting things occur recently.  

A major ice storm rolled through and dumped a lot of sleet and ice on us, so we were kind of stuck inside for quite a few days.  It's no fun playing outside when all you do is slip and the wind bites. 

Kayla is crawling everywhere. The determined little thing will quietly crawl to her goal, grab whatever got her attention, and like a minature ninja, will sneak up on me when my attention is elsewhere.  She's pulling up on everything, frustrated with the indignity of crawling and wants to stand like everyone else does. 

Evan is doing good. He caught a stomach bug and we had a couple of terrible days of spontaneous vomiting and little to no eating/liquid. It got bad enough I considered taking him to the ER because he didn't take any liquid for so long. 

But he got better. 

We haven't had to use the g-button, at all. 

I'm hoping to get it removed with no fuss in the spring. 

Evan is doing okay. He is always such a sweet boy.  He comes up to me and says "hiiiiii" in his own particular way, and hugs my legs, then walks off. 

I've debating taking the kids to see Santa this year. I want to, but feel like the mall with all it's noise and pack of people would make Evan feel a bit overwhelmed. I notice he tends to do better when we go shopping for groceries at less popular hours than when the place is packed. 

He's become very intently interested in letters and numbers. He'll point to a letter or number and say "This?" So I tell him what that letter or symbol is.  

I've been having a hard time with certain things though. After my initial burst of activity after his diagnosis of autism, I have done nothing. 

I mean, we still go to therapy, we still do all the things we normally would do..... But I have yet to make contact with other parents. I haven't quite gotten up the motivation to start calling and inquiring about other programs we can take advantage of. 

And that's okay, I'll get there. 

In the meantime, I'm going to bake cookies, take the kids to the park, take Evan to his therapy and try to have a very Merry Christmas.  

 It won't truly be that hard to be merry. 

Thankful

Every year, I am so thankful. I'm thankful for my family, immediate, extended and in-laws, and thankful I am alive and with my kids.  I am thankful I was given the opportunity to be a mother at all, that Evan was born, that just when I was getting used to being everything being his Momma entails, Kayla came along and shook things up. I am thankful she was healthy and has such a big personality. 

I am thankful to have a roof over my head, to have reliable transportation, and to have food in our bellies and clean water. 

I am thankful to have been given all  the opportunities I have.  And that I have been given the opportunity to learn from my (sometimes monumental) mistakes. 

I am thankful for all the wonderful people who have helped care for Evan through the years. From the day he was born til today, he has had so many people care for him, I have lost count. 

I am thankful for my life. It's not perfect. It's not traditionally beautiful. 

But it's my life and I love it.