Sunday, February 8, 2015

Happy Tubie-versary

Today marks the beginning of Feeding Tube Awareness Week and it also marks the SEVEN year anniversary of Austin's feeding tube.

Yep.

One week after the surgery that saved his life he had another.

Two life saving surgeries in 7 days.

This kid ROCKS!




Meet my arch nemesis.

The feeding tube.

Just two days ago I was candidly speaking to his feeding therapist, who is an absolute Rock Star in her own right; I wanted to know the ONE thing that I am sure every parent asks her.

Is he going to need feeding therapy forever? Is he ever going to REALLY eat?

I really tried to say it without my voice cracking. I think I succeeded, because without missing a beat she said, No and Yes.

You see food isn't his problem. He will likely always be a somewhat picky eater, but his problem is more behavioral now. This is his normal.

Which looking back at the last 7 years is a kind of a good thing.  Tricky, but good in weird and warped kind of way.

***

Austin was born at 5 lbs 6 oz. A tiny little creature. He left the hospital just 4 days later weighting in at 4 lbs 12 oz. So tiny.

At his one month check up he was 6 lbs 12 oz.

At his 2 month check up he was 8 lbs 2 oz and declared FTT.


FAILURE TO THRIVE.


Might as well have stamped failure right on my forehead.

It's not like we didn't feed him. We did feed him, ALL THE TIME.

But due to his small chin and lack of suck/swallow reflex he could only take 1 or 2 ounces of a highly fortified formula in 10, 15, 20 minutes. We weren't allowed to feed him longer than that because he was burning more calories trying to eat than he was gaining.

Round the clock we fed him, spreadsheets were involved, techniques were used, specialists were consulted.





It was all very well documented.

In the end, when he was hospitalized for his tracheotomy I knew that the only solution was going to be a feeding tube. I nearly begged them, let's not do two surgeries - just one shot get in & get out. The doctors were not convinced.

As soon as he has his trach you will see he will be able to breathe and the eating will happen, they said.

He won't need a feeding tube, they said.

But one week later they wheeled him right back into the OR and he DID get the feeding tube.

And then something really miraculous happened. He thrived.






Gone was all the torturous bottle feeding and stress over calories.

Or so I thought.

We've had many struggles and lots of triumphs. But definitely more struggles than I care to remember.

We still have long road ahead when it comes to feeding, but I will never regret getting the tube.

Austin loves his tube. That's a good thing.

I did the right thing.




He has grown by leaps and bounds. He lives a very full life. He plays baseball, soccer, goes to the zoo and Disneyland like any other 7 year old.

He just happens to get his main source of nutrition in a different way. I'm okay with that for now.

Someday he will learn to love eating too; until then I just need to trust in him and his abilities.

Someday the feeding tube will be behind us too.  I truly believe that.



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Sunday, February 1, 2015

2557 Days Ago

February 1, 2008.

That was the day I had to hand over my 3 month old son to the trusted arms of a surgeon.

It was the first time, and certainly would not be the last.







But, it saved his life.






There were moments when I was not certain I was making the right decision.

So many unknowns.

Then a week later, he smiled for the first time. I knew then that it would be okay.

Somehow we would get through this.

If he could manage a smile, so could I.




And we did it. Together we accepted a "new normal."

It was never easy, it was not fun.

We lost a lot in the process.

Together we lived that life our new normal for 4 years, 10 months and 17 days.

When we where in the thick of it, it felt like it might never end.

And then one day it was done.

Our struggles are far from over. And some of the things we lost we will never recover.




But once again, we will manage a smile.

We are in it together, always have been, always will be.

----

Someone once asked me, How do you remember all these dates?

My response was simply, How could I ever forget?



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Saturday, January 31, 2015

Learning to Survive

Where have I been for four years?

Where do I begin?

I guess I'll start in the middle of the story.

Karin died.

The same Karin who I thanked in my last blog post.

The same Karin who wrote, The Road Home.

One day in June 2011 she went to the hospital to have beautiful baby boy and she died. The next morning while reading the news on her Facebook page my heart felt like it stopped beating. There it was, following an earlier post and picture of her smiling and holding her new baby. A picture of her new family.

Karin died last night.

The words just started at me. Stunned. Shocked.

It was too much. How did this happen?

I was suddenly consumed with an amount of grief that I did not even know was possible for someone I had never met in person. That day a piece of my heart just broke off and died too.

Karin wasn't just another blogger, or just another special needs mom. She was my person. She was a perfect fit for a best friend - sarcastic, witty and smart as a whip. She was giving and friendly and just the sort of person I needed on my side when I started this journey.




Karin wrote a humor blog, over at It's All Good If You Can Laugh, and although she didn't focus her writing solely on her son's medical issues, she did agree to write a post here and share a small part of her journey with us. In her guest post, The Road Home, Karin expressed a fear she had as a parent; a fear a lot new parents share, but a very real and daily fear for those of us who had medically fragile children, kids whose very lives were dependent on technology and a back-up battery to survive.

When I went back to read it, this last sentence was haunting.

"Someday, I hope to put my child to bed, confident in the simple faith that we will all wake up in the morning."  {emphasis mine.}


Honestly, I was not sure if or how I would ever tell this story if I came back to writing my blog. It's probably not my story to tell.


Except it is. I can tell you about the part where my best friend died and how that has affected me.

----

Dear Karin,

You know for years I went to your Facebook page and posted messages to you - whenever something important happened in my life or just randomly when I thought of you and wanted to say Hi. I guess some habits are hard to break.  

Sometimes I thought it made me seem just a teeny bit crazy posting there. It's not like you are monitoring your FB page, right? But I figured it was as close as I would get to visiting you. Finally, about 18 months ago I unfriended you, it just felt like it was time. I'm not going to lie it was hard and I almost felt guilty. But I've never stopped thinking of you. Never stopped wishing you were here.

It's been three and a half years now since you've been gone and I still cry on occasion; when I think of how much I miss your friendship, when I listen to Duran Duran's Ordinary World, or when I stop and think back to all the love and support you poured into our trach community and to me personally. 

When your birthday passes each November I think of how you'd probably want to be celebrating at Disney World. When that nasty business with Penn State happened I am sure you were very vocal about it, but I am certain you are still a loyal football fan. And each June when the anniversary of your death comes and goes I think of your sons and wonder how they are doing now.

I don't cry just because I miss you, I cry because your sons don't have their mom. And it all seems so unfair. These children that you wanted so very much and carried next to your heart; they won't have you when they go to school, or graduate or get married. And it just covers me in a wave of emotion. I know in your absence they are loved and cared for, I never doubt that for one second.

But your death - so unexpected and shocking, it really rocked me.

What if that had been me?

It's something no one imagines will happen to them. It's not part of the birth plan.

That first year was especially hard for me without your support. When I got Austin's Autism diagnosis a month after you died I cried because I couldn't call you to cry with you. How silly. There were just so many things left to say. There were days (okay, weeks) that I needed to hear your encouraging words to me, mom to mom.  I could imagine your words.


"Don't let this stop you. You've been through tough times. You are Strong. Tell your story. If you ever need to talk I am here."





But you aren't here to do this for me anymore. And things are different now.

You've been on my mind a lot lately. You know just the other day I found that CD you mailed me - you remember, the one you stopped to send as you were on your way to Disney World, with the pictures of 'Bubba' and his surgery. You were exactly the kind of friend who would do something like that. I miss you.

Those four years that we grew to be friends, oh boy we went through some really tough times with our kids and in our own personal lives. I'd like to think we held each other up. That's what besties do.

You know Austin's ASD diagnosis was the first BIG thing I had to tackle without you to reassure me that it would all be okay. It was tough.

I guess I just wanted to say thank you again. In the months before you passed, you helped me through a very difficult miscarriage. You know to this day, I never told anyone but you. I didn't need to, you were my person. And even as your own baby was growing in you; a baby who would never know your laugh or see your smile but his first hours, you helped me.

You cried with me. You sent me encouraging emails and talked with me. Every single day that I needed you, you were there for me. Thank you.




I remember how completely over the moon you were to be pregnant again. I remember the day you found out and made me swear not to breathe a word until you made a formal announcement.  We kept pregnancy secrets, that's what we did for each other.

And then one day I woke up and you didn't.

So needless to say my heart has not been the same for a while now.

I never got the chance to tell you that two months after you died I found out I was expecting again too. And then a few months later I learned it was a son.

I'll admit after what happened to you in the hospital I was a little more than scared.

When we were deciding on a name the one name that kept coming to mind was Kiran - a suggestion by my friend Sarah to honor you.  Honestly, I wasn't sure I could do that - could I name my son after a friend who died after giving birth to her son?

Maybe it was the perfect thing to do - the circle of life and all that. I am certain you would have thought that was totally cool.

But in the end, the decision was not completely up to me, I let Austin decide. Sort of. We practiced and practiced, but he couldn't pronounce the name Kiran and so I ultimately decided to let that go as a choice. (Sorry, we are still working on speech therapy.)

It was a very rough pregnancy, lots of tests, lots of ultrasounds, lots of reasons to worry. But in the end Austin has a little brother now. He also has special needs and you'll learn more about him in the coming months.

So now almost 4 years have passed since you've been gone and so many, many things have changed in my life. I am slowing coming back to writing. And I know you would say "it's about time!"  But I knew that before I began to write about my life on this unexpected journey, I wanted to say thank you for your constant encouragement to continue to tell our story. Thank you doesn't even begin to cover it.

I like to think of you as my own guardian angel. And just know that you are so very missed by a community that seemed to go a little quieter when you left. This is one case where silence is not golden.



Right back 'atcha!




But I won't cry for yesterday
There's an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive


Ordinary World
Duran Duran




(FYI: My Twitter handle is no longer "sneakpeekatme". Long story. The Road Home & Kysilka are Karin's public Twitter accounts.)


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Thursday, December 23, 2010

Special Needs Children's Blog Wins EPIC Award

You like me. You really, really like me.


epicmombloggerwinner


Last week I was nominated on Twitter for an award, Disney Epic Mickey's Epic Mom Blogger. The award was hosted by Mom Bloggers Club and they wanted "to reward a mom blogger who has closely supported important causes or otherwise gives back to the mom blogger community."

Voting was completed solely via Twitter, and I was blown away by the support I received from Twitter's #specialneeds community and all who tossed a nomination in for me.


mamabegood epic


When I saw this tweet last week I joked with the sender that I would use it as part of my acceptance speech. Never dreaming of course that it would happen.

On Monday, when the nominations were tallied I found out I was a finalist. As only the Top 5 nominees moved to the next round, I was encouraged, now I had a 20% shot of taking home the Epic Mom Blogger title and the grand prize. (The grand prize is a $1,000.00 gift card, Nintendo Wii, and copy of Disney Epic Mickey.)

I knew things were going to get tough. I only had 24 hours to write one helluva blog post describing why I deserve to win. Easy.

Not.

If you know me in person at all, you know I'm more of a behind the scenes kinda gal. I love to help and organize. I support many causes, but rarely am I the girl out front chanting with a banner and my face painted.

Except here.

On this blog I am waving my special needs flag and yelling at whoever will listen to me.

I wrote a blog post about my journey as a special needs mom, Disney Epic Mickey Searches For A Hero.

And I won.

This blog is a very small fish in a very large pond (no pun intended)....and I won.


***


So I want to take a minute to thank my a few of my Dorys. These are the moms without whose help, guidance, support and laughter I could not have made it over the past three years. These are the moms who encouraged me to start blogging and continue to help me share our story.

Thank you Sarahs.

Yes, plural.


Sarah I., writes (occasionally) over at Tales from a NEHI Momma about her three adorable (read: crazy) children.  In particular about her son Wesley, who is diagnosed with a rare intersistal lung disease, NEHI. She is hysterically funny and without a doubt has gotten me through some of my toughest times, she was around long before this blog.

Sarah K., is a baking from scratch, babywearing, clothes making, organic cooking kinda gal. So in other words, my total opposite. Our love of coffee and late night chats were instrumental in getting us through many tough surgeries and recoveries. She is a witty old soul, supermom to Mila and a total rock star.

Thank you to my lawyers (turned Special needs moms), Karin and Catherine. Although I have never actually sought legal advice from either of you, I'm sure you were good. ;)

Karin is the former special needs mom who wrote this and never stops offering her love and support, often through humor.  Many hours, emails, pictures and tears later...she is my go-to gal for everything I ever wanted to know about jaw distractions surgery but was afraid to ask. Also, her being a complete Disney fanatic helps to keep our friendship going strong.

Catherine, late to the party, but my virtual soul mate. My rock. You are a genius, do-er, go-getter and the best blog conference roommate, ever. I wish I had half your energy and spunk, I'd bottle it, sell it and we could be millionaires. Billy is one lucky boy to have you on his side. There is no one else who could have helped me through these past six months the way you have. I love you and thank you for all you have done.

And of course, readers, followers, fans and friends: Thank you for reading, supporting, commenting (hint, hint) and just plain being here. To my fellow special needs parenting bloggers, you are my online family and you are never far from my thoughts. You have helped to change the life of this struggling single mom, more than you know.

And lastly, a HUGE thanks to Disney, you make dreaming possible.



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Wednesday, December 22, 2010

We Will Be Celebrating Festivus Next Year

You know how sometimes you have a really great idea.

Like dressing your toddler for a holiday party.

Then remembering that you wanted a Christmas card photo in front of the tree.

While making him wear THE most adorable snowman hat.

Four days before Christmas.

While he screams at you.

Five minutes before you leave for a holiday party.

In a torrential downpour.


The No Christmas Card


Yeah.

Sometimes you just need to know when to walk away.

Each year Festivus is looking better and better.



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Tuesday, December 21, 2010

Disney Epic Mickey Searches For A Hero

The Disney franchise is famous for creating one of kind heroes and villains alike. As I was reading about the new Disney Epic Mickey game one description read, "players strive to help Mickey become an epic hero by helping him make right choices."

How cool would that be? To have someone helping you as you navigate the murky waters of parenthood, and better yet this lovely place called Holland (as the world of special needs parenting is often referred to.)

As a matter of fact, that's just the sort of person I was searching for eighteen months ago when I started this blogging "hobby." I have found that person many times over, she is alive and well in other "special" parents.

A few months ago I wrote that Shirley MacLaine was my hero(ine). The truth is I have many heroes, but my favorite Disney hero doesn't even have a film named after him, now how's that for unsung?


marlin 2


Marlin, from Finding Nemo, is an overprotective, yet determined parent who fights relentlessly against many obstacless to find his son lost in the Great Barrier Reef.  The first thing he says when he meets his son is "I will never let anything bad happen to you, ever" which is the same feeling I had when I held my son for the first time.

Eventhough Nemo is the one with the movie and nautical ride named after him (one of Austin's favorites, by the way), Marlin is the one befriending sharks and navigating through a mine field of jelly fish. He has a singular goal, to bring his son home safe.

How many times as a special needs parent have I wished for that same thing?

At the beginning of the story Marlin lives a nice, safe, secluded life unaware that it is about to take a very tragic turn, one that will challenge everything he believes and holds dear. Once Nemo is all he has left of his former life, he limits, rescues, protects and clings to him. His expectations are low for Nemo, due to his disability - his "lucky" fin.

Once his life has been irretrievably disrupted Marlin recognizes his true calling the moment he sees his son get taken away from him. The question of refusing his call is never an issue because he knew he would not allow himself to lose his only son. My son is lost in a different kind of ocean, it's called "special needs", and while many have swam here before few have been able to map the way.

I hold a certain affection for Marlin. We both have children who would be considered "special" and as much as we want to protect them and keep them home all to ourselves. We have begun a journey that will release us from our fears and bring us the greatest joy we have known.

I've written many times about WHY I blog. What started as a way of informing my family and friends quickly became more than a hobby, it is my joy and my passion. Once I started receiving emails from across the country and around the world it became something so much more than just MY story.

If there is one thing I have learned over the past eighteen months it is this, I'm not alone.


epicmickey1


I don't deserve to win Disney's Epic Mickey Mom Blogger simply because my child is sick or because he has special needs. Or because I am some sort of crazy Disney fanatic . (I am.)

I deserve to win because I'm not satisfied by waiting on the world to change, I am a hardworking, single mom who is effecting social change. I want acceptance for my son, not merely tolerance, and I know the best way to make that happen is to share our journey.

I can dream of bloggy fame and fortune (a book? a movie? a hollywood tv show?), but really all I want is for my child to live a happy, healthy, successful life. And the best way I know how is to set an example.


Thank you to everyone who has supported this blog and nominated me for such an honor.

No matter what happens, we both know he is the real hero in this family.


IMG_9554





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Tuesday, December 14, 2010

In Which We Try To Stay Out Of The Hospital

Early morning wake up calls by the Nurse are never a good sign. And when she says I have already called the hospital...even worse.

Let's backtrack for a minute, Austin was very upset last night and woke up a few times crying and doing that crazy thing where he desats to the 60s after he stops crying. This craziness started happening right after the jaw surgery and it was attributed to pain issues. So when it started again last night I figured it was probably some sort of stomach pain, it did not occur to me that it was jaw pain because he has been off his pain medication for a month.

He has had a bulge and redness on the left distraction site, which I have spoken to the surgeon about a few times. He figured it was scar tissue and said he would clean it up when they did the next surgery to remove the internal distractor hardware. Case closed.


Toddler Face Close Up


Which bring us to my wake up call this morning.

The bulge ruptured and the nurse noticed that there was bleeding from the distractor site and skin was hanging. Yeah gross, I know.

Of course it was before office hours so she called the Plastics doctor on call, to no avail. She woke me and I put in a call to the Plastics surgical nurse, packed a bag and jumped in the shower. Don't you love multi-tasking before you've had any caffeine?

When the surgical nurse called me back she said, "Come on down." So we did. I packed a bag because last time we got caught off guard and I knew if it was bad they would probably admit him.

Here's the deal.

The internal hardware needs to stay put until at least the end of January. There is no doubt he will have surgery to remove it, but it's too early right now. So this morning when I called out to my Facebook friends asking for prayers I was hoping that the surgeon would have another solution and we could avoid going inpatient 10 days before Christmas.


Hemifacial Microsomia Jaw Distraction


The current plan is to buy as much time as possible for his jaw bone to grow and strengthen. If they have to remove the hardware early the entire surgery will be considered a failure. They are certain he will relapse because the bone needs at least three months to grow in. So we wait. And hope.

We came home on both topical and oral antibiotics to try to avoid infection. Right now that is the major concern, avoid infection and buy time (preferably at home). He will remain on antibiotics until they remove the internal hardware. Austin has been a total bear today, so we are pretty sure he is in pain again. Sigh.

This surgery has had more complications than I care to mention right now. But the good news is we are home and everyone is taking this very seriously to avoid surgery too soon.

I tried to get a good picture of the offending hardware on my cell phone.  You can see it much better if he lays down, however then the screaming and kicking ensues so this is as good as it gets for now.


jaw distractor surgery


Let's just hope this antibiotic regiment works and we can keep Austin infection and pain free for the next 6 weeks. Thanks for all the thoughts and prayers, keep 'em coming.

****

If you are on Twitter would you please consider a tweet for me? Mom Bloggers Club wants "to reward a mom blogger who has closely supported important causes or otherwise gives back to the mom blogger community." If you think I qualify just tweet:

I nominate @sneakpeekatme for Disney Epic Mickey's #EpicMomBlogger! http://bit.ly/epicmomblogger



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Wednesday, December 8, 2010

Santa Says, Eat Your Vegetables!

I made a Christmas video for Austin...or rather, I answered a few questions and uploaded some pictures. The folks at Portable North Pole actually made the video for Austin. (Picky, picky.)

Either way, Austin enjoys watching HIS video message from Santa. And as a bonus Santa is asking him to eat new foods, now THAT is a gift Mommy would love for Christmas!!

video

The video is free to create, unless you want to download it. It cost $4.99 to download to your own computer.

Me thinks, it was money well spent.

And on the subject of Santa, check out this humorous story by Catherine Calhoun about keeping the magic of Santa alive. (Read the comments. I like the ones that says 'if you don't believe, you don't receive.')


Do your children still believe in Santa?



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