Please Tell Me Why Your Hangover is More Important Than My Son's Life

So lately, I have witnessed a new "hangover cure" being popularized by celebrities on social media.
Essentially, the "cure" is just an IV being placed by providers that specialize in relieving hangovers, exhaustion and jet lag.  And this practice is being popularized by celebrities.  Because, golly, it's just so HARD being them, and they need a pick-me-up every once in a while.
Forget coffee!  The hangover cure will fix you right up.

Under normal circumstances, I could not care less what celebrities are popularizing.

But since there's a shortage of the very same life-saving components  used in these hangover cures, I feel the need to speak up.


You see, there are many people who need these nutrients to live.  Not to feel better.  TO LIVE.  Such as this family, who shared their story two years ago.

And this mother who spoke out against this "hangover cure".

People who only are in this world due to the life-saving components that are in short supply, and have been for years.

So can anyone explain to me how it is possible that this same life-saving elixir is being used to alleviate people's HANGOVERS?
All you have to do is Google "IV hangover cure" and scroll through the images to see not only how widespread this practice is becoming, but also how it is being marketed. Images of people lounging by the pool with IV bags set up next to them, pictures taken and posted on Facebook and Twitter of smiling, healthy adults showing off their IV sites, people loaded on a bus receiving this "therapy" because they couldn't be bothered to even go to the nearest clinic.

Better yet, check out how Buzzfeed decided to detail their hangover cures.




How about this image:

This is my son. Do you see this large white line going directly to his chest?  That is IV nutrition. And he wouldn't be here today without it. 

Please tell me why your hangover is more important than a mother getting to hold her baby for the first time. 

Or why jet lag is a good excuse for me never seeing this smile. 

That my son's life means less to you than a night of over-indulging. 

There are more faces than his. Premature babies, children with various medical issues that prevent them from eating and drinking, and adults as well. 

We only required TPN for a short while.  Others live with it in their daily lives. 

How is okay to deprive anyone of something they need to live just so you won't be inconvenienced? 

Tell me how the life he leads is less than yours. 

I don't understand it. 

And neither does he. 

All he knows is that he is loved. 

So please, please, don't "like" pictures of people receiving this treatment.  Don't send the message that it's okay.  And if you want to take it one step further, how about speaking out against it?

You can contact Melissa Harkey, the mother I referenced above, who is fighting to bring to light the consequences of this misuse of IV nutrition.  She will send you a form letter to send to your state senator. 

Melissaharkey@gmail.com

Time to update

Well, as usual, I've failed to update my blog regularly.  When I last updated, we were receiving a diagnosis of diabetes insipidus for Kayla.  

Since then, we've been told that her MRI came back perfectly normal (epic high-fives all around) and that her lack of anti-diuretic hormone could possibly be caused by habit drinking.  But don't limit her liquids, just in case. 

I'm skeptical.  I've been watching her drinking habits, finding that she goes through periods where she is drinking an amazing amount of liquids, and other times she is drinking only excessively. 

She still gets upset if there is not a drink nearby.  

Her 2nd birthday is coming up fast in April, and her checkup with her pediatrician with it. At that time, I'll be talking to her to let her know we haven't seen improvement since we spoke last. 

Otherwise, Kayla is her usual strong-willed self. She's talking more, discovered the word "mine" (oh, goody) and covers her big brother in lots of love. Well, love and some wrestling, anyway. 

And Evan?  He's doing great.  Last week, he tried both raisins and apple slices (big win on our part- getting him to eat an apple has been years in the making), and ate enormously for a few days. 

I was practically doing cartwheels over his request for a sandwich and chips at 9:30 the other night. 

He's been discovering the joys of "writing" in some dry-erase books he got for Christmas. 

Christmas was a big hit.  

We got lots of books, which both kids enjoy. 

The biggest news for Evan is that we have been given the opportunity to have him enrolled full time in ABA therapy. 

ABA stands for Applied Behavior Analysis.  

This will be an all day thing, 5 days a week, taking place of his pre-k classes for now. 

They'll be working with him one on one to address behaviors that can be problematic, such as.... Well, this: 

I often joke about Evan's NEED to create a chaotic environment.  But there is an underlying issue with this. There are days he never stops- banging things repeatedly non-stop for as long as I will allow because he like the sound, moving on to destroy something else if he's re-directed. 

As soon as laundry or toys are put away in their proper places, they must be pulled out again, scattered across the floor. 

There are days he's just going non-stop. 

We've also been trying to deal with his frustration and anxiety. Evan can be so very sweet and loving. He's one of the sweetest kids I know. 

But sometimes, he gets frustrated and hits, or will bite. It's been a while since he did bite, but while we've reduced the hitting of other people, he's taken to hitting his hand on surfaces.

Another benefit of the ABA therapy will be the coordination between us and the therapists. 

Strategies that work for him, both at home and in his therapy environment can be shared, and used to help him make more progress. 

His speech is still delayed, but we have been seeing growth there.  He's saying "thank you, Mama" and requesting specific foods (usually chips or popcorn), talking about Curious George, and even starting to ask about the potty. 

Potty training has been difficult- he often refuses to even sit and try, displaying a lot of anxiety when asked.  So we've taken a relaxed approach, and have made minuscule steps forward. 

I hope that ABA therapy will be a good thing for him. I believe that it will.  

Go with your gut

Yesterday was Kayla's MRI.
She did wonderful, only getting upset from her lack of liquids and food the last hour we waited before her sedation.

When they did her blood work, it showed that she had low calcium and sodium levels- both signs of dehydration.
Previous blood work showed her electrolytes at a good level- because she was given as much as she wanted to drink at all times.
This is one of the dangers of diabetes insipidus.  Without something to drink, she will dehydrate faster than anyone would expect, due to her body's inability to conserve water.

They had her hooked up to IV fluids during the MRI, and she was actually in a really good mood after waking up. She usually is so happy and sweet when she's properly hydrated.


I've been thinking about Mommy instincts lately.
So often, when a mother has a concern about a child, she's given a lot of advice, either through friends, the internet, coworkers, or family members. They are all well-meaning, but I sometimes find it very disturbing how often mothers are told to ignore their gut reactions when it comes to their kids.

I can give a million examples from my journey with Evan how going with my gut reaction has benefitted him.
But for the purposes of this blog post, I'm going to use Kayla, because I feel the need to emphasize the fact that she was born with no complications, had a dozen perfectly fine well baby checkups, and has always been within the range of "normal" in her development.  I feel she is a better example because OF COURSE Evan was going to have medical issues related to his Omphalocele. We knew that, and were prepared.
"Go with your gut" is often the best advice I hear for mothers with questions on our support group for Omphalocele babies.
I feel it is far less likely to be said to mothers of children with no known medical issues.

When I started feeling concern for Kayla's excessive thirst, I started googling.
"Excessive thirst toddler".
It was the first step prior to seeing her doctor. I wanted to see if there could be any simple answer out there, and as a veteran medical condition googler, I knew I would be reading a lot of unhelpful advice posted on message boards.
The ones that stuck with me (in a bad way) were the comments from other mothers advising one another : "of course your kid drinks a lot, you offer the cup to them, they're going to drink.  You should limit how much you offer." Or this gem: "Don't give in to your child's demands, they're just wanting to delay bedtime (or whatever, there were several supposed reasons)".
All advice for children under the age of 3.

I found that very disturbing.

Now, I'm all for sharing experiences and advice. But I whole-heartedly believe that it should be followed by the caveat- "all children are different.  What worked for me may not work for you.  Go with your gut."

One of the questions the kidney doctor asked me was - "have you ever limited her liquids?"
My reply?
"Yes, but only for a short time.  It never felt right."
Let me elaborate.
I limited her liquids for about an hour. I already knew from experience how upset she got every time her sippy cup was empty and she went to get a drink.
I felt, for lack of a better phrase, in my gut that her reaction was not normal, and that limiting her liquids was not the right thing to do.

I am a big fan of Dr. Sears and his (and his wife's) books on attachment parenting. I read all the advice when Evan was in the hospital. Using many of the techniques outlined (sometimes modified due to our unique situation) I formed a bond with Evan that helped me to understand him and his needs.  While he was connected to tube and machines, I held him, I watched him, I became intimately familiar with his behaviors and I connected with him.  I understood his needs, and it benefitted us both.

I believe that practicing attachment parenting helped Evan through the hardest bumps.

So when I had Kayla- I held her. I nursed her. I listened to her needs.  I developed that "mommy gut feeling" that tells us when our babies need something from us.
The signs can be small, almost imperceptible.

Kayla needed to drink.  She ate well, but still drank enormous amounts. Why should I limit her liquids?  It wasn't hurting her.  I gave her water mixed with juice to prevent her from drinking too much water (it can happen).  I rotated the types of juice and added pediasure, milk, and just gave her liquids at all times.
It was easier than trying to fight it.
Sometimes, when something is "easier" because it keeps your kid happy, it really is the best path to take.



Diabetes insipidus is the diagnosis- cause unknown at this moment. It is most likely a problem with her pituitary gland. This includes the possibility of a pituitary tumor.
There, I said it.
I didn't want to, because it's a scary thing to say.

However, I should be hearing from the doctor about the MRI results this week.

Hopefully today.

Waiting sucks.

Diabetes Insipidus

I tend to keep things to myself until I have more information when things are going on in our lives.
This has been true all through our journey with Evan.
We've had some medical concerns for Kayla over the last couple of months. At first it seemed very innocuous, she just drank a lot. All the time. She got mad if she didn't have a drink.
But I started tracking her fluid intake, and the numbers were alarming. She took in 100 ounces yesterday, and that's pretty typical for her - water, a little juice and milk.
To give you an idea, the recommended water intake for an adult woman is around 72 ounces.
I expressed my concern to her pediatrician and she referred us to a nephrologist (kidney doctor). It takes time to see a specialist, and then time to get test results back for both blood and urine samples.
The doctors are testing her for diabetes insipidus (totally different from diabetes 1 & 2 and more rare) since her glucose tested fine. Diabetes insipidus is caused by either not producing enough of an anti-diuretic hormone, or her kidneys not processing the hormone, causing her to urinate excessively. In order to prevent dehydration, she drinks more.
The tests came back and the nephrologist feels from the results that the problem may lie with her pituitary gland (where the anti-diuretic hormone is produced), and has ordered an MRI to be done on September 30th.
She will need to be sedated during the MRI.

Diabetes insipidus can be a symptom of other issues, which can be determined by the MRI.

Until that is done, we have no other information. Kayla is happy, and otherwise healthy, so in the meantime, we're giving her as much to drink as she wants, having a drink available to her 24/7.

http://en.m.wikipedia.org/wiki/Diabetes_insipidus

I've had some time to process this information while we were were waiting.

It's hard to think that something could be medically wrong with one child and after all that we went through with Evan.
Though a diagnosis of diabetes insipidus is not devastating, the possible causes has me on edge, and fills me with anxiety. Waiting for answers is hard, and the possibility of getting no sure answer is high.
I can't help but feel, though, that all my experience with Evan has prepared me for handling this knew unknown with Kayla.

Shopping challenged

Having never been to a Toys R Us before, I set off cheerfully in the late afternoon Thursday to pick out toys for Evan's birthday.

I say I did this cheerfully because I could not know I was about to experience what could only be described as the most heinous shopping experience ever in my life.

We walk in and I have one child in the cart. The other left to roam free. So far so good.

Until we came to the Thomas the Tank Engine train set and table.

Oh Toys R Us- why do you hate me so?

Now don't get the wrong impression- I love that Evan loves Thomas. He adores trains.
But a train set in a public place where a multitude of other children is asking for trouble.
We spent 30 minutes there.
He ran off other kids
Kayla wanted down to play, or so she made me believe, but it was only a ploy to get out of the cart and go tearing down another aisle.

Screaming ensued as I wrangled her.

Evan refused to leave the table. Or look away from it.

Finally after he swatted at another kid who got too close I swooped him up kicking and screaming a removed ourselves to the opposite side of the store.
Hoping to distract them sufficiently elsewhere.

Can I say thank you enough to Toys RUs fore configuring their store in what can only be described as a labyrinth?  During our trek down aisles that were not clearly marked and dead ends, I half expected to come across a Minotaur. It probably would have improved the experience.

Luckily, I was able to follow the bread crumbs that no doubt were produced by my children and find the registers.
I just followed the loudest concentration of screaming. By children, by parents, I'm not sure, due to the temporary partial deafness that was the result of pulling my kids away, shrieking from every toy in sight.

Then I saw the lines.

Good Lord, I'm in Dante's Inferno.

I gave up. No toy is worth the aggravation.
Leaving the store holding two screaming, squirming children, Evan flailing about.  Leaving the sounds of tormented souls behind.

Stay tuned for part 2 of my recent shopping experiences, wherein I discuss the travails of a mother in need of a kiddie leash.

Birthdays

Evan's 3rd birthday is next week.
As always, I try to hide it, but I hurt inside. My anxiety skyrockets and I feel less like a mom celebrating the birth of her beautiful son and more like some ancient warrior preparing for battle the next day.
Why?  I mean, Evan is utterly fabulous, he's an amazing, sweet little boy who has the ability to touch my heart with just a smile.  I love him to pieces, and everything he does seems miraculous to me.

But no matter how I try, every birthday I remember. I remember the day we got his diagnosis- we were laughing, seeing this active little squishy on the screen, kicking and hiding his face. Then the doctor walked in.  And when she told us "There is a problem" it felt like my heart was ripped out of my chest.
Bless her heart,  Dr. Papa was absolutely fantastic to us, so compassionate and understanding.

But that feeling still is fresh to me.

Fast forward a few months, through the spring and into the hot summer months, to July 31, 2011.
10 AM, and I begin to suspect I am in labor a full month before our due date. It's a Sunday, and I had just had my baby shower the day before.
We drive to the hospital, I'm definitely in labor but secretly hoping they can stop it. 11:30, we arrive at the hospital and while my husband is parking the car and I'm riding on an elevator to go to get checked out, my water breaks. Everywhere.
They get me in a room, and I'm so overwhelmed by the contractions and the suddenness of it all, and the fear, I have not told the staff that my baby will need special help. Even though my mind is screaming "Get the surgeon, get my doctor, get the NICU staff ready, call my mom!"  I'm utterly terrified.

My husband does all this for me once he tracks me down. They check me over, hook me up, prep everything and I see the L&D nurses hustle. I'm dilated to 6 already. This labor is going fast.
My doctor is out of town, so the on call doctor at her practice had to review my file. He's taking too long to get there, the nurses have an edge about them that says we'd better hurry.
"She's going now, whether the doctors are ready or not."
They check me again, and I'm now dilated to 8.
I have to have a csection, my son' sliver could be damaged in the birth canal if I have him this way.

So I'm prepped for the csection. Everything is a blur at this point.  Contractions are coming fast and hard and the nurses keep telling me "Just breathe, don't hold your breath, don't push".
They take my husband aside and get him dressed in his paper booties and gown.

I'm wheeled into the OR, alone amongst a scrambling mass of people. The anesthesiologist wants me to sit on the table, and curve my back forward so he can place the spinal.  I can't see the needle but I know it's huge. A contraction comes right as he's inserting in my back, but it's okay, I need to be very very still so they can proceed forward as fast as possible.
I'm laid down on the table, already feeling numb, contractions are no longer a problem.
They brief everyone in the room. My husband comes in.
A paper sheet goes up between me and my belly, my baby that's coming too soon.

I worry.

Everything starts and it feels so strange, like pressure with no real feeling behind it. I listen to the doctors talking back and forth.

I wait.

The look in my husband's eyes is two parts adrenaline and one part sheer terror.
I think I keep repeating "it's okay, it's going to be okay".

1:30. I feel my body moving, they're jerking me around trying to get the child out of me. Taking him from me. I rock on the table and the anesthesiologist says "get ready, Dad, take a quick picture when I say so". He gets his phone out and is ready.  The anesthesiologist gives the word and he peeks over the paper sheet and points his phone.  "Wow.  Oh, wow."  Those are the the only sounds I hear.

No crying.

They rush Evan away to the side of the room, and my husband watches from my side, silent, unable to see anything for all the medical professionals surrounding our son.

It's a blur until a doctor approaches. He leans over and tells me "the Omphalocele was ruptured.  We have him stabilized but he's going to need surgery."
They eventually roll him by in an incubator.

I see Evan for the first time.
Absolute love. I look past the ventilator tube, past the incubator walls and the gauze and bag on his belly.
My son.
I love you.

Then he's gone from me. Taken to the NICU to be prepared for his first surgery.

It's a blur afterwards. I remember very little except my parents arriving, my husband going next door to Cook Children's to wait while surgery tries to keep our boy alive. The roll my bed out to watch Evan go.


It's still so fresh in my mind. And every birthday, I re-live the events even though I know he's fine now.
It's hard to celebrate his success without acknowledging the pain and turmoil of his birth. If I don't remember the struggles we had over his first 8 months, it is minimizing how amazing he truly is.

And I think a little pain is worth that.

It's been a while

Life reached up and smacked me around for a bit, sorry about the lack of updates. 

So..... Updates!  

Evan HAS NO GBUTTON!  His trach and gbutton stomas are closed. 

For the first time ever, I ran my hand freely over his belly. No bandages or equipment. 

I had tears in my eyes. It was awesome. 

We walked in the March for Babies. 

It was so fantastic. 

We attended both the NICU reunion and the TCU reunion. So great. 

(somewhere below you will see a pic of Evan being held by his pulmonologist) 

We've been enjoying outdoors a lot. A LOT.  The zoo, various parks through Fort Worth, playing on the patio- we live for the outdoors. 

We have stayed busy. 

We are restarting Evan's therapies. 

He's eating so well, but we need to work on his variety and eating more to gain weight. 

Oh, and a very pretty girl with unmanageably wispy hair had a big first birthday!  

She is not only walking, she's running. It's the most fantastic thing to see her and Evan chasing one another and laughing. 

They're partners in crime. 

Again- very very busy. 

Enjoy the pictures.  I promise to be more faithful to my blogging. 

Truly. 

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. 

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 

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