The reality

I joke a lot. I mean A LOT. It's my way of dealing with stress.  

Example: As I was getting my latest c-section, I noticed if I looked hard enough, I could see the reflection of what they were doing (I.e. cutting me open to extract my child). Did I crack a joke?  Why yes, yes I did.

It sounds crazy.   My doctor commented on it months later, so it must've made an impression on her.  

But it's how I deal with tough emotions. 

I joke a lot about Evan and his medical issues.  

Here's the reality: I am incredibly lucky to have Evan with me today. There were times his life was in the balance and I didn't even accept how bad off he was. 

I've seen him stop breathing, I've seen him struggle, I've seen him slowly decline, and I finally saw him thrive. 

The memory of him struggling to survive will never leave me. I will always worry about him.

He is doing fantastic, and I anticipate he will continue to do so. But there is no guarantee. 

Our support group lost another baby yesterday. This child fought and was beautiful and really joyful and sweet. She was two years old. And something went wrong. 

My heart hurts for her family. Hurts so bad.

I've recently seen many beautiful children pass away, some from cancer, some from complications associated with their omphalocele.  I loved them, and I ache for their family. 

The reality is that each and every person needs to realize that every day you have with your child is a treasure. It's a gift, it's phenomenal.  Yes, it's tough and it's trying at times. But I can't help but feel grateful for every second. 

 

Progress Report

I'll admit it: I am worn out, worn down, exhausted and just plain tired. 

There are days I am just getting by.  

Mostly, though, I am just..... Crazy tired. 

I realized that I have been under a huge amount of stress since early 2011. Lo and behold, I see 2014 fast approaching and I think to myself: "It's been a long 3 years". 

I find myself composing possible blog entries in my head.  They never quite make it lately because my body and mind are wholly invested in just making it one more day. I also have been working on a personal project, one I've been thinking of for years but never quite managed to do. 

Nevertheless, I feel the need to defend that lone indulgence/pet project/search for my identity beyond "Momma".  

I feel a bit like the Lone Ranger.... and we won't discuss how often I hear that distinctive theme music in my head.  

In the last month, we've taken some steps forward. There are days I feel like I'm throwing myself into a brick wall.  

Evan is eating and drinking orally very well.  He has a follow up with his surgeon in early October, and I hope to discuss possible removal of his g-button. 

It may take a few months to get to that point, but in the scheme of things, I'd say it was well worth the wait. 

He has learned to recognize and respond to more and more words and phrases although his communicative vocabulary remains small and he seems to have trouble enunciating. 

We have put in a request to see a developmental pediatrician to have him evaluated. It should take some time for him to be seen. 

In the meatime, we still take him to therapy and work with him daily at home. 

He's working on opening doors, and has been fascinated lately with balancing things. He moves the dining room chairs and leans them on things precariously. 

Sometimes when I leave the room, I expect to come back to a "Poltergeist"-type situation. 

Alas, he doesn't have the upper body strength to achieve something like that just yet. But he would if he could. 

Yes he would. 

Too busy

It's been a busy month. 

Today we had his first feeding evaluation since before Kayla was born. A lot has changed in 5 months. Evan is eating and drinking... We'd like for him to drink more fluids orally since he only gets about 25% of his total fluid intake orally. We would also like to see more diversity in what he will eat, since he refuses all veggies and fruits.  His diet is pretty limited, so we supplement with an instant breakfast drink to fill in the dietary gaps. 

But all in all, he's doing really well, and has made a ton of progress. 

As of now, he is cleared from physical therapy. He no longer requires it. 

So now he's just receiving occupational, feeding and speech therapies.  

It's been busy with a lot of things other than usual routine of therapies.  Our AC went out, and we ended up having to purchase two window units (one for upstairs and one down) in order to stay cool for the 5 days we waited for it to be fixed by our landlord and the AC company they hired. Which made me want to crawl up the walls with frustration, because there was no reason for it to take that long. We all piled into our bedroom (the lone AC upstairs) at night and I got to experience the joy of Evan's head being firmly planted in my spine. 

We went to the lake, and let Evan wade around. It was a lot if fun. 

We had a rock thrown through Evan's bedroom window. Which was not fun. 

Luckily, Evan was not in his room at the time due to the lack of AC.  I say that the Fort Worth police officers that responded were very courteous and one even said "bye-bye" back to Evan as we ushered them out of our home. 

I do believe I'm done with August.  

Luckily, September is just around the corner.

I'd say we're ready. 

Evan's 2nd birthday

It was a fairly routine day yesterday. Evan was in a pretty good mood, and we went to his weekly speech therapy session in the morning, like always. 

I made cupcakes, and he and I snuggled at nap time. After daddy came home from work and we ate dinner, we lit the candle on his cupcake and sang "Happy Birthday".

His cupcake was CRAZY sweet (cookies n cream batter with strawberry icing.....what were we thinking??) so he didn't eat any, since he's not a big fan of overly sweet things. 

Then we opened and put together his present, which was a big hit. 

After that, it was time for bath and bed. 

We'll be taking him to the zoo when Dad is not on-call and likely to be called out to fix an AC.  

Today we had his 2 year checkup.  He is pretty much following his own curve- 8th percentile in weight at just 24 lbs, and 22nd in height at 33 inches.  Pretty typical numbers for an omphalocele kid. 

We discussed how far he's come, and keeping an eye on his developmental milestones, since he's delayed.  

I have been a mess remembering the day he was born. It's hit me hard this year, I think because Kayla is so young and her birth still fresh in my mind, in stark contrast to his. The fact that she just turned 3 months, which was a turning point for Evan.... It wouldn't seem like they would be related, but they are in my mind. 

Happy 2nd birthday my sweet boy- I love you more than words can express. My world is a better place with you in it. <3

2nd birthday in 2 days!

I can't believe Evan will be 2 in just two short days.  

I have been so emotional thinking about how lucky we are to have him part of our lives. Literally crying a little every day lately. 

He's doing so good. He's hit a speech "growth spurt" and has been talking quite a bit. And (drum roll please) HE'S DRINKING!!! 

How awesome is that?  He'll have close to a full sippy cup through the day. We are still having to supplement with liquids through his g-button, but we're slowly reducing the amount. Almost ALL his calories come solely through eating orally now, with only some whole milk in the morning and evening. 

He's trying to run, climbing over everything, understanding more and trying to communicate more. 

His baby sister will be 3 months as well, and she is doing fantastic.  It's strange to have a chunky baby. Evan is starting feel more comfortable with her and will touch her (relatively) gently. 

All in all, I have to say I'm one lucky Momma. 

Eating and climbing

It never fails to amaze me how much I used to take the idea of eating orally for granted.  You just have no clue how difficult it really is to teach someone how to eat when they have never eaten with their mouth before.  

Babies can develop oral aversions for many reasons.  Evan just was never given the opportunity due to poor health while he still had his sucking reflex as a baby. Yes, they lose it. Add to that some reflux, and being intubated (on a ventilator) and (ironically) having a naso-gastric feeding tube, and you have a child that won't eat or drink. It takes time and patience for him to learn what is instinctual for most babies. 

That being said- OH MY GOD, I AM SO PROUD OF HIM! 

We started an experiment where we gave him formula through his feeding button only once in the morning and once in the evening.  The rest of the day we give him water through his g-button, since he's still not drinking, and let him experience cause and effect with hunger and eating. He's doing AWESOME. We started the "experiment" over two weeks ago, and have not looked back! He eats great through the day, chowing down on bread and peanut butter, cheese, crackers, soft meats, apples, bananas, etc.  We're working on expanding his food choices. 

I really can't express how amazing this is to me.  

I'm hoping that we can get him drinking sometime soon in the coming months.  

His little sister is 2 months in a few days. She has been fantastic, getting more and more expressive and sweet. 

She resembles her big brother an awful lot. 

Evan still isn't sure about her, but I think they'll be good buddies when she's big enough to play. 

In the meantime, he is FAR too busy climbing.  On everything. And running.  Because I needed a workout routine, obviously. 

In just a month, we will be celebrating two years since we began our crazy journey with Evan. <3

The problem with social networks is....

I have a love/hate relationship with social networks.  

I love them because they do help me stay connected with people I like and find support for rare things like a child with an Omphalocele.  Support groups and shared stories have made the difference for so many people out there. 

I really, truly hate social networks because they become a popularity contest for many people. Or even better, they become an unhealthy outlet for terribly unhappy people, who feel the need to say ugly and hurtful things in order to get a reaction. 

Unfortunately, these two collide more than they should. 

I can't help but imagine a day in the life of someone who puts so much effort into APPEARING perfect and put together all the time, or at least for their friends on Facebook. It boggles my mind the energy they invest in getting JUST the right photo posted of their kids (carefully groomed, posed and consequently unhappy) , or their home (seriously did you put those flowers in the glass vase out just for that photo, because I can't imagine a small child leaving that alone), or a video their pets doing something that took HOURS to teach. 

Consider my brain boggled. 

Because I am so terribly imperfect. I'm not going to represent myself as otherwise. 

Through the years I've been criticized for being a little too honest at times- I just can't shake this bad habit.  

My house is an utter mess, no makeup has graced my face in weeks, a tank top, flip flops and maternity pants qualify as "getting dressed", and my child doesn't even understand the notion of "posing". 

I'm cool with that.  Because what's more important?  Spending hours on the appearance of having everything put together, or investing that time in being a parent? 

It's a tough job to do, but the benefits are pretty awesome when you take the time for them.