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. 

How much information is too much?

In the wake of the terrible and well-documented hoax involving Brad Paisley and his wife and a stranger who stole pictures of a real child with cancer... (Read more here: http://news.yahoo.com/blogs/nightline-fix-abc-news/elaborate-hoax-lures-brad-paisley-kimberly-williams-paisley-153350254.html?vp=1 ) 

I feel the need to question- How much information should I share about my child online, accessible to everyone?  It is a parent's responsibility to protect our children, but at the same time, some of us desperately want to share the beautiful story of their lives. We want to create awareness, to show mothers who are going through a terrible time that there is hope and beauty and joy that can come from their journey. We want to show that there are enormous obstacles, but in order to overcome our fear, it helps to take away the unknown factor. 

To help our children and to help families everywhere and to help others understand, we sometimes share photos that are heart-wrenching and show the worst moments. 

This isn't shared for sympathy, but because we know that if we share these images, it might help someone down the road, if only by taking away the fear of the unknown. 

You all have likely seen the images of children with cancer or birth defects on Facebook, with the message "Like= $1" or "Like if you have a heart, ignore if you don't".  

These images are most likely part of the public domain, released as part of a news story.  And someone totally unrelated to the child in question is simply using the image to gain likes on their page. 

Beyond that, there are the people that use these images for far more sinister purposes, such as the story above. 

Now, I actually have sympathy for the people who feel the need to use such images to garner attention and public sympathy.  They are sad individuals that really need help, and this is a way they are reaching out. 

However, it doesn't excuse the fact that they are fabricating a person using someone else's very real pain. 

Things like this hurt the cause of so many parents who are only trying to bring awareness to the world. To make the world a better place for their children. 

I've often witnessed mothers being told that they're lying to gain sympathy, that they're making too much fuss out of nothing.

We see this happen a lot. Sometimes because people are more prone to think that stuff like this doesn't happen to real people. So they say we're lying. 

It hurts. 

So here is my statement in regards to all posts and pictures on my blog: 

These images are mine. These words are mine. If you use any part of my blog without my permission, you will be subject to what laws apply. 

In addition to that, if I find ANYONE profiting either monetarily or emotionally from images of my son's pain, I will not let it go until I track you down, personally.  

Consider this statement my copyright. 

Autism

Okay, so the subject is stark and unadorned.  Just like what I have to say. 

Because of Evan's still-significant delays in speech, and some behaviors that alerted me, we requested an assessment by a developmental pediatrician. 

After she did her assessment, her conclusion was that Evan exhibited mild to moderate signs of autism. 

Even though I was prepared for this diagnosis, I am currently trying to plan for all that comes next. 

Luckily, he's not yet 2 1/2 and early intervention can be a big help. 

<3 

<3

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. 

Two weeks later...

Now that we are halfway into our first week home without assistance (my mother helped out all last week) , I feel like I can update again.  

Wow, it's AH-Mazing having a newborn home with us.... This is probably helped by the fact that Kayla is a champion sleeper, sleeping amazingly well for a newborn. And what a contrast! I was so terribly miserable and sleep deprived for the last few months, my doctor immediately noticed a difference in me at our two week postpartum checkup yesterday.  How ironic that I get more sleep after the baby has arrived than I did before.

It has been emotional for me holding this tiny little baby next to me almost every hour if the day- it has gone a long way to healing so many of the emotional scars left from Evan's first few months.  I've done everything I could since he was born to be everything I could possibly be to him. I took on his care with a fierce determination to have a good rapport with him, to let him know he was loved and to care for him as we'll as any mother could care for a child, healthy or not. 

Because of the struggle I remember from the first few months with Evan, I keep asking myself "Can it really be this simple?"  Not that parenthood in any way shape or form is simple... But I keep looking over my shoulder thinking surely I'm missing something here- this is going way too smoothly, I MUST be doing something wrong and not realizing it! 

Of course, when I have a quiet house like I do at this moment, when both my children are napping (Evan in his bed, Kayla on me), I am hard pressed to find any fault. 

Evan has been adjusting.  It hasn't been easy, and my heart aches for him when he gets upset about Momma's lap being taken by his baby sister.  

On the other hand, his expressions when she is crying are FANTASTIC.  

Finally, though, I feel like we're striking a good balance between giving Kayla what she needs and Evan what he needs.  He has resumed eating orally, which is such a relief. He's enjoying real foods, so mostly I feed him off my plate- which kills two birds with one stone because I frequently get too busy and forget to eat, so if he is eating what I eat, I'll HAVE to make time to get something for myself.  Ha-HA.

We'll have good days and bad days, but one thing I'm confident in is that my babies will be loved always and will know it every day.  

We're doing okay.