Sneak Peek At Me

Happy Tubie-versary

noreply@blogger.com (Janis) — Mon, 09 Feb 2015 00:07:00 +0000

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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2557 Days Ago

noreply@blogger.com (Janis) — Sun, 01 Feb 2015 16:16:00 +0000

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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Learning to Survive

noreply@blogger.com (Janis) — Sat, 31 Jan 2015 17:12:00 +0000

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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Special Needs Children's Blog Wins EPIC Award

noreply@blogger.com (Janis) — Thu, 23 Dec 2010 15:44:00 +0000

You like me. You really, really like me.

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.

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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We Will Be Celebrating Festivus Next Year

noreply@blogger.com (Janis) — Wed, 22 Dec 2010 14:35:00 +0000

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.

Yeah.

Sometimes you just need to know when to walk away.

Each year Festivus is looking better and better.

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Disney Epic Mickey Searches For A Hero

noreply@blogger.com (Janis) — Tue, 21 Dec 2010 14:50:00 +0000

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, 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.

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.

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In Which We Try To Stay Out Of The Hospital

noreply@blogger.com (Janis) — Wed, 15 Dec 2010 00:53:00 +0000

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.

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.

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.

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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Santa Says, Eat Your Vegetables!

noreply@blogger.com (Janis) — Wed, 08 Dec 2010 14:50:00 +0000

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!!

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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The Disney Fanatic's Christmas Tree

noreply@blogger.com (Janis) — Tue, 07 Dec 2010 00:42:00 +0000

Every year we (read: my mom) decorate a themed Christmas tree. Usually the theme is based on a color scheme, last year the tree was top to bottom in black and silver...my brothers would like to call the Raiders tree, but my mom dubbed it 'Aztec Princess'.

It was a knock out, but er...not exactly child friendly.

Yes, those are feathers! It was quite exotic.

(No, those boxes are not props. We really do pile them that high, 25 Grandkids!)

We started decorating the tree last night and Austin was quite busy "helping" with the ornaments, as in removing them to play. That seems to be a familiar theme.

This year when my mother (the designer) asked for suggestions I added my .02 and the final theme is Disney. Because gosh darn it, Mickey and Santa go together!

I think the grandkids are going to love it!

Today some final changes were made, when he wakes up from his nap this is what Austin will see.

The tree features some stuffed Disney favorites, among them Steamboat Willie, Dumbo, Stitch, Pooh and of course, Sorcerer Mickey. And to really top it off the Tigger and Winnie the Pooh figures are animatronics. So cool!

The Disney Princesses are all present, as well as some of Austin's personal favorites Buzz Lightyear, Pinocchio and Simba.

Do you have a holiday decorating tradition?

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'Tis The Season: First Picture With Santa

noreply@blogger.com (Janis) — Mon, 22 Nov 2010 01:43:00 +0000

Yes, you read that correctly. Austin has never met Santa in person before. If you recall, we do Holiday photo shoots at home.

But knowing that Santa season is coming, I have been subtly trying to prepare Austin for this moment for the past month and it paid off.

About a month ago I put a picture of Santa Claus on the fridge that I ripped out of a seasonal catalog. And every chance we get we have been practicing saying 'HO, HO, HO! Merry Christmas!'

It's one of the phrases that Austin was able to say last year that he seems to have gotten "lost".

Luckily, "H" is one of the sounds that has really improved since his jaw surgery. He can say "HI" or "Hew-wo" very clearly.

On Sunday we went to a local craft show and much to my surprise.

No line. No meltdown. No hesitation. No problem.

Bring on the jolly guy.

Austin climbed right into Mrs.Claus' lap and promptly gave her a TSA patdown.

I'm so proud.

Once that was done he focused on Santa's beard for a few minutes and they had a nice chat about The Beast. (Beast was 'toy of the day.')

It was an awesomely calm moment filled with smiles and candy canes.

And then he reached out and grabbed Santa's hand! As if to say "Nice to meet you Jolly man. See you again next year."

YES!! This is why I carry my camera in my purse.

I wasn't planning a picture with Santa so we were woefully unprepared in the holiday outfit department. Sorry.

In addition to Santa we also watched a fantastic group of Carolers AND decorated a cookie.

After the cookie we made a beeline for the car as "someone" was in sensory overload and in need of a nap.

It was a good hour.

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My Kid Takes Great Pictures

noreply@blogger.com (Janis) — Thu, 18 Nov 2010 17:38:00 +0000

or at least I think so. ;)

But I'll be honest, there was a time I didn't always think so.

When he was a tiny baby and underweight, a preemie, he did not always take great pictures.

He looked sad most of the time. Doh, he was sick so of course he was unhappy.

Still I should have taken more...if I had known, I would have taken more.

January 12, 2008 -- Look Ma, no tubes in my face, neck or belly.

This is the last picture I have of Austin before we knew exactly how sick he was, before his body was attacked with tubes.

(Okay so maybe attacked is the wrong word, but you get me.)

He still has that little frog. Some day we will recreate this moment, although it may be many more years before ALL those tubes are gone.

I think that might be the beginning of a kinda-sorta smile.

That's how I'll remember it.

Do you have a favorite picture of your child? Ellen's photo carnival ends today. Come by and check out all the cuties!

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So That Autism Thing...

noreply@blogger.com (Janis) — Wed, 10 Nov 2010 16:01:00 +0000

This seems to be a never ending saga. Heh, right along with every other saga we have going on. Perhaps the blog name should be changed, take your pick Sneak Peek at Saga, or maybe Sneak Peek at Drama?

Anyway. I missed the boat on that whole speak out on Autism earlier this month. But heck, I'm sure since I'm new to this Autism mom role, you'll cut me some slack, right. Cool. Thanks.

So I finally got a chance to see the Psychological evaluation completed by Regional Center. The long and short of it: PDD-NOS. That is Pervasive Developmental Disorder - Not Otherwise Specified, for those not into Autism Spectrum Disorder lingo.

They are also terminating his services as this diagnosis is not debilitating enough. Which means it does not interfere with his life enough.

Excuse me?

I dunno, call me crazy, but he doesn't make eye contact or speak. Now if he doesn't want to look at someone, well that's probably not a HUGE deal for most kids...but when you are trying to communicate with him via ASL. Well then not looking in my direction is kind of a HUGE deal.

So basically, we are screwed. In September his RC coordinator sounded fairly confident that a PDD-NOS (provisional) diagnosis would mean a continuation of his services. Last week I got the denial letter.

So in a few weeks we will be saying good bye to his Speech Therapist, Physical Therapist and Occupational Therapist (Feeding and Sensory Issues.)

This will leave Austin in therapy limbo basically.

Based on his IEP, he will be getting 3 hours of Special Ed instruction and 1 hour of Speech Therapy per week provided by the school district. And that's it.

Last week I contacted the Boone Fetter Clinic to have him evaluated there on the recommendation of his CHLA Speech Therapist. She is concerned and feels that he needs more services and an independent evaluation. I agree. So far I am playing phone tag with the Intake Coordinator.

Alternately, I have the option of paying OOP $800.00 to have him evaluated at another clinic. Either way I have to appeal the RC decision in order to get him some behavioral therapy. With any luck, some time after next summer we will have a Fair Hearing to work it out. {Oh fun times.}

In the meantime, we are trying to engage him more in structured activities and stop the twirling as needed. I think the new schedule, therapies in the AM and "school" in the afternoon will help him. We are going to implement a picture schedule (PECS) and hope he will work well with that. His Special Ed teacher is also a Kindergarten teacher for Autistic children, so far they have worked well together.

***

Now here is a little eye candy.

Austin met his new cousin, 10 day old Zachary.

It was Love At First Sight!!

BTW that blue blanket was once Austin's too!

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Touched By The Lion King

noreply@blogger.com (Janis) — Thu, 04 Nov 2010 13:50:00 +0000

Last month I had the privilege of attending a showing of The Lion King while in Las Vegas for Blog World Expo. I made a date with my favorite Southern gal, Supercatcalhoun and we headed to Mandalay Bay to go to the Theatre. {You have to spell and say it the proper way when it involves at least one cast member speaking in a British accent. What? You didn't know that?. Okay, maybe that's my own rule.}

It was truly an Experience. With a capital E!

If you haven't seen it and have the opportunity You.Don't.Want.To.Miss.It! And I'm not in awe just because we had fantastic seats or because those seats were complimentary, thanks to KDC Events & Mandalay Bay Resort.

I just really loved it.

The set designs, the costumes, the dancing, oh my! Really, I don't gush very often, but it worth the entire trip to see this show - it was the highlight of the weekend.

Marija Juliette Abney, Jeremiah Tatum, and Derrick Spear in the opening number “The Circle of Life” from THE LION KING Las Vegas. ©2009, Disney. Photo Credit: Joan Marcus.

I did spend a lot of time wishing that Austin could have enjoyed it too. I'm not sure he could have lasted through the entire sitting without fidgeting, but I'm sure he would have love it. What makes me so sure? He is obsessed with Disney movies and The Lion King is one of his Top 5 favorites.

Despite, or perhaps because of, the fact that I have seen the movie about 10 million times, give or take, I found myself really enjoying the live performance from start to finish. I knew what parts were coming up next and never once had to consult the program {Thank You, Austin.) And the really fantastic part was seeing how they made every aspect of the story come to life, right before your eyes.

I loved that they added in some new musical numbers and I enjoyed the classics as well. It was really phenomenal to see the characters "in real life". I especially Timon & Pumba's on stage time, they were a riot!

Now time for a confession: I hate musicals. I do. People busting out in song for no good reason really annoy me. I am pretty sure I am the only person I know who doesn't watch and love Glee, but that is another story.

This, however, wasn't your typical musical...it was Magical. I was in complete awe of the pageantry and overall experience. The Lion King may have changed my mind about musicals, I'd see it again in a heartbeat.

If you are heading to Vegas, you can catch the show until December 2011.

***

On a side note, I read a story in the LA Times about one of the cast members who died of Leukemia, 11 year old Shannon Tavarez played young Nala on Broadway for 6 months. Please say a prayer for her family, as always it's sad to hear of someone losing their child.

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Nothing To See Here, Folks

noreply@blogger.com (Janis) — Wed, 03 Nov 2010 17:41:00 +0000

I'm writing at Hopeful Parents today. Drop by and let me know what you think.

If you missed Austin's 3rd birthday post be sure to check it out.

Here's a random pumpkin picture to delight you.

And last but not least, I started a daily newspaper last month. If you are one of the 75 tweeps on my Twitter list "The Cool People" you may be featured. The Cool People daily is aggregated stories from my list of parents/caregivers of special needs (medically fragile) children. If you are not listed but should be let me know. NOTE: You must have a Twitter account.

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A Tigger-iffic Birthday

noreply@blogger.com (Janis) — Mon, 01 Nov 2010 07:25:00 +0000

Austin's last two birthday parties have been Halloween themed. That's the problem with being born so close to a holiday, it just meshes right in. So this year, for his 3rd birthday I decided I wanted to do something different, a non-Halloween-type birthday party. I just needed to decide on a theme.

It was almost Buzz Lightyear, but then his cousin, Elijah had a Toy Story party for his birthday in August. So I switched gears. Then we planned to go to Disney's California Adventure for a Princess breakfast. But cost and surgical recovery impeded that plan. With a chronically ill child one thing is for sure, planning too far ahead is TROUBLE.

**

When I came across a toddler-sized Tiger costume in a grocery store {of all places}, I brought it home and stashed it away for Halloween. Austin has a "thing" for Tigger. He watches Winnie The Pooh cartoons daily, its his latest obsession.

He even met Tigger on our last trip to Disneyland, the day before his recent surgery. He was scared and thrilled at the same time.

Then the Big birthday party plans got ~~overshadowed~~ sidetracked by the Big surgery, so I decided it would be better if we would just had a small cake during our annual Halloween party, again.

Next year we will attempt a non-Halloween party, again.

Then on a stroke of luck, Austin was gifted a cake by Icing Smiles, three days ago. I was thrilled that they were able to pull it off, since we decided to save his "dream cake" for another date when he is finished with all these surgeries.

On Friday, I spoke with the local baker and I let her know that he was going to be Tigger for Halloween, but since it was last minute and a holiday...I let her know I'd be happy with even just a pumpkin cake.

It was all very vague.

Then she called and said it was done, so I went to pick up the cake while Austin was napping.

All I can say is WOW!!

Have you ever seen a more perfect fitting cake? It even matched the decorations.

Austin was very happy, although it's hard to tell from these pictures. {Smiling is hard work these days.}

When it came time to blow out the candles I was sneaky and bought those trick candles that re-light. ;)

I love the look on his face.

Priceless.

But the best picture is the pucker...look at his lips rounding and the blowing! {Is it crazy that the first thing I thought was - Boy, his OT is going to love these pics!}

WOOT!!

When it came time to go trick or treating Austin opted -- ah, LOUDLY -- to stay home instead. Fine with me. I was just happy he tolerated the costume and the face painting.

Maybe next year we will work on actually leaving the house.

This year he just wanted to sit in front of his cake and play. He lined up all his new toys on his cake topper (with a little help).

And as a bonus, he even ATE some. {More OT happiness!!}

Now that is what I call a Tigger-iffic birthday!

**

I need to give a shout out to our wonderful baker and Icing Smiles for making this happen. Everyone loved the cake, but more importantly Austin was thrilled and for that I cannot thank you enough. It was truly a generous gift.

Readers: If you are a baker {even as a hobby}, please consider donating your time to a worthy cause. And if you are a parent of a chronically ill child, you can request your own dream cake too.

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Halloween Crispy Treat Cupcakes

noreply@blogger.com (Janis) — Sun, 31 Oct 2010 05:19:00 +0000

Move over Emeril, Bobby and Jamie!

There's a new chef in town.

Tonight Austin helped decorate some goodies for his 3rd Birthday party tomorrow.

What is that saying, necessity is the mother of invention.

I intended to make these into rice crispy balls, roll them in candy and place them on a stick. But the mixture was initially too gooey and Austin wanted to help. While it cooled slightly, I decided instead to use cupcake liners et Voila!

He helped place the sprinkles and placed the sticks himself. He has quite the knack for decorating with candy.

We started with a basic rice crispy treat recipe:

4 tablespoons butter or margarine
1 package (10 oz. marshmallows) or 4 cups mini marshmallows
6 1/2 cups crispy rice cereal (dry)

Wooden sticks
Multi-colored sprinkles
Cupcake liners

1. In large saucepan melt butter over low heat. Add marshmallows and stir until completely melted. Remove from heat.

2. Add crispy cereal. Stir until well coated.

3. Add some multi colored candy to mixture, fold in.

3. Using buttered hands scoop warm cereal mixture into cupcake liner.

Then light bulb moment...quick, while my hands are buttered someone grab a camera!!!

4. Add sprinkles and push one wooden stick into each. Cool.

5. Try your best to wait for the party!!

They make the perfect kid sized treat. {For those of you who have kids that eat. Weirdos.} This batch made 21, but if I had filled the liners more it probably would have been closer to 15.

And as a bonus, NO sticky fingers!!! You're Welcome.

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A Hypothetical Preschool IEP

noreply@blogger.com (Janis) — Thu, 28 Oct 2010 13:50:00 +0000

So let's say you had an IEP meeting scheduled for a Tuesday and on the previous Thursday you realized that you had a legal right to get the evaluation results in advance for your review, but you didn't actually receive anything.

So, hypothetically, the following day you call the School Psychologist and she says sure she'll email you the "draft" the following day, but calls it "unusual". You decide to ignore that and wait for your test results to show up in your Inbox.

In the meantime you may or may not have innocently started a bit of a debate on your Facebook page about whether or not it is your RIGHT to ask for the results and if it is "professional" for educators to provide those results upon request.

The promised email arrives at let's say 7:24pm on Saturday (you know, a totally random time.) As you are reading it you see some typos and/or things that need serious correction. One statement says the student's dad has mental health issues...you consider leaving that part in just to be fun, but decide that is probably not the best place for such tomfoolery.

Then say you pass the draft along to your IEP support buddy for her input and she calls you laughing because the IEP states that your "other son" has Autism. She wonders where you are hiding the other kid, because (hypothetically) you only have ONE child named Austin and not say...Moe as listed in the "draft" report.

Then say the Speech and Language portion is missing and that is really the meat of the report, but you wait patiently for it to arrive on Monday. And the Adaptive PE portion is also missing because no one informed the teacher about the upcoming IEP, as you learn the day AFTER the IEP.

Then it comes time for the IEP. You rush from the hospital to drop your kid at home and make it right on the dot! Whew. But thankfully you are not the late one and the meeting is held for a few minutes to wait for a few stragglers.

Fourteen people are seated around a table of thankfully adult sized chairs for three hours discussing your child. It is agreed that his name is Austin and not Moe. They assure you, you DID receive the correct report!

The discussion begins with the Nurse and a review of his Medical record. Boy, was that long! Then come the test results and the qualifications.

Yes, Moe qualifies for Special Education. His primary qualification is OHI (Other Health Impairment) and secondary qualification is Autism. Right there in Black & White.
Ouch. {Although it is worth noting that the School District has different criteria than a Psychologist.}

You make your spiel and say how much you love his Head Start homebound teacher, BUT you point out that, she is neither a Special Education teacher, nor does she know any sign language - both of which you feel is the least we could do for Moe, er, Austin considering all his "issues".

At which point, the Director of Special Education leans over to whisper to her neighbor for a lengthy period of time. No worries because your IEP buddy is staring them down. You know, just for fun.

Then, you continue your ~~tirade~~ thoughtful discussion and state the obvious. If the doctors, who without realizing it {or actually being in attendance} were the most powerful people at the table, but if the doctors had let Moe go to school we'd be having a different discussion. But they didn't.

And because he has to stay home until say March or April, we need a plan that includes instruction by a Special Ed teacher, some DHH support, and at a minimum Speech therapy at HOME.

The DSE says she can't do that last part part without permission from the Superintendent. Again, an "unusual" request. She then says that they are only obligated to offer Home School to children in First grade and above...but since this is such a special case she is prepared to offer the standard 3-5 hours per week WITH a Special Education teacher.

Which makes you state the other obvious...if he "could" go to school he would get 9 hours of specialized instruction per week -- so 3 hours sounds like it might not be enough. Just sayin' we need to really try to aim for 5.

There is more whispering. Then suddenly the Speech Therapist in attendance offers her services and says she would be glad to take on Moe as a client and make a weekly home visit. At which point the Director looks like she wants her head to spin off, but she agrees. Even though this has "never been done before" ... Really?

You have always wanted to be a trendsetter, so you put your stamp of approval on it.

It's been three hours and everyone gets up to stretch, satisfied that you have accomplished something. People sign the paper and leave. It's a wrap!

You read over the minutes, make a few minor corrections and submit your own notes and a brief narrative to the Psychologist for the file. On the bottom of your notes, you may or may not have cc'd a local advocacy group that you contacted for input.

The Director of Special Education upon reading it then asks, with four witnesses present, if you have sent this paper to said Organization. You say 'No, not yet...we just discussed it.' She then states "you know when you bring one of those advocates to the discussion it can make things more difficult and ...you know, adversarial."

To which you say, ~~Did you just say what I think you said?~~ 'Adversarial? Didn't we already all agree on something?'

To which she says nothing...perhaps realizing that she just publicly told a parent NOT to pursue their right to seek an advocate for advice. Really?

Whoops!

Which of course makes you wonder how many other parents she has said this to? And how differently might things have gone if you had shared your notes at the beginning of the meeting instead of the end?

Anyhoo, the next sound you hear may or may not be a letter being sent to the Superintendent of Schools. (Hypothetically speaking, of course.)

What would you do if Moe was your child?

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Photo: Mashe

A Word To The Powers That Be

noreply@blogger.com (Janis) — Wed, 27 Oct 2010 18:12:00 +0000

We need to find a way to work together.

School Administrators and Parents.

Doctors and Parents.

I am finding so many people are missing the big picture.

This is not about your BUDGET or your EGO -- this should be about MY child and what is best for him.

I want what is best for him.

You will need to get over it.

Believe it or not, I do not want to fight with you. {But I will.}

I want to work with you and walk away knowing we both did our best for him.

The End.

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The {Great} Pumpkin Festival

noreply@blogger.com (Janis) — Mon, 18 Oct 2010 13:50:00 +0000

We went to a local Pumpkin Festival with the family. It was the perfect Fall day for Pumpkining. (Yes, I made it up.)

We had two wagons, two strollers and about 11 kids.

I wasn't sure how things would go...you know, since Austin has a ~~love~~/hate relationship with pumpkins.

But since he WAS having a great hair day...I decided to go for it.

***

Austin loved running {away}.

It turns out he is quite an expert at picking the perfect pumpkin.

Of course, he loved hanging out with his cousins.

He's such a ladies man.

But the best moment of the day happened when he saw Zac sitting by himself,

went over...

...and gave him a hug.

***

Now I have a craving for some apple cider and pumpkin cookies.

What are your favorite Fall recipes?

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Quiet Time

noreply@blogger.com (Janis) — Wed, 13 Oct 2010 05:14:00 +0000

Sometimes you just need to relax with your best friend and a good book.

Getting well requires lots of kisses and gifts from far away places.

Thanks Billy, Ella & Cat for the awesome autographed book! (And for Mommy's gift too!)

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Why I Should Be Chosen For Mayo Clinic Center for Social Media Advisory Board

noreply@blogger.com (Janis) — Tue, 12 Oct 2010 13:50:00 +0000

Mayo Clinic Center for Social Media is seeking to complete the formation of their 25-person Advisory Board. And they asked for my help. Sort of.

They've stated that they'd like to consider: "representatives from state, local or federal government, public health, medical and scientific journals, hospital and nursing associations, disease-oriented organizations and patient foundations, medical associations and specialty societies, and of course physicians. While we have a pair of patients among our initial members, we’re open to more. And we don’t want to limit nominations to the foregoing categories: we hope to also have representatives from other industries (such as the technology sector)..."

You know what is missing here?

No, not lollipops.

Caregivers.

DOH! {just kidding Guys.}

Speaking of which, did you notice the Advisory Board is mostly male? Granted these are some top dudes I follow and learn a lot from, but maybe they could use a bit more estrogen on this panel. After all, they did say they were "seeking ... diversity in all its forms."

If they bring me on board they will have added an educated (Sociology), Latina, Single Mom raising a kid with a rare disease -- all wrapped up in one package. Trust me, if that isn't diversity, I don't know what is.

Their Mission:
Lead the Social Media revolution in healthcare. {Sort of like Jamie Oliver, but with computers and maybe stethoscopes.}

Did I mention I am a social media junkie, advocate and writer? {Read: Revolutionary} How could they not pick me?

But they don't have to take my word for it. They can just ask the folks at 5 Minutes For Special Needs, RARE Blog, Hopeful Parents, She Posts, Kidz, Complex Child or Vote 4 Hope what they think. Or maybe they could check out my growing Facebook or Twitter communities.

Either way I'm sure once they consider how my unique perspective as a caregiver can provide value to their panel they will be calling (or tweeting.) Maybe we will run into each other at Blog World Expo.

Thank you for the opportunity Mayo Clinic, I look forward to hearing from you.

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How To Crowdsource For Special Needs Children

noreply@blogger.com (Janis) — Mon, 11 Oct 2010 13:50:00 +0000

The buzz word in social media is "crowdsourcing". A company has an issue or a question, wants to make a change or fill a job or position...they crowdsource it.

It means they go to the people. They don't call in the high paid "experts", they turn to the average Joe (Or Jane) for a solution.

I have been doing that for years. I dare say, we (as caregivers of children with special medical needs) all have.

Going to the crowd is nothing new to those of us dealing with children with complex medical issues. We call them message boards, list serv, yahoo groups and forums. And I am gonna say it, in my opinion we are experts, at least of our own children.

Now I am a fairly educated person and I can recognize the difference between medical advice from a professional (Doctor, Nurse, Specialist) and real-life practical advice from another parent in a similar situation. But trust me, if I need to know "how-to" work or troubleshoot a particular special needs medical equipment who am I going to call? a Pediatrician? a Physical Therapist? or my friend on Facebook?

Granted, I may put in a call to the person who sold or rented that particular piece of equipment, but on a Saturday at 8PM I am not likely to get a response. My friend in Maine however may be awake and have a couple of suggestions that will help me get through the weekend. I just crowdsourced.

Some of the most useful advice I have ever gotten regarding feeding tubes have come from other moms, not from the doctors or nurses whose job it is to "teach" me. As a matter of fact, on more than one occasion I have taught them a tip or trick I learned -- online.

We, the parents, have known for years that crowdsourcing a medical issue is likely to bring us a solution and more often than not differing opinions on how to deal with a problem. In which case, I can then take all of these possibilities and run them by my son's doctor. It's called participatory medicine. We can discuss it openly and come up with a solution that works for both of us.

By now my son's doctors are used to me having suggestions. They often comment on how involved I am in his care, as it should be. Some are surprised, but most are glad that I am interested enough to research an issue and seek a possible solution on my own time. Let's face it we can never have enough time to pick their brains during a 15 minute clinic appointment.

I say if it is good enough for The Gap or World Renowned The Mayo Clinic, it's good enough for me. Because frankly, sometimes it does take a village.

I love my crowd. If you are new to world of complex medical needs I highly suggest finding a group of caregivers you trust to bounce ideas and solutions off of. Facebook or Yahoo groups are a good place to start, even Twitter but most health issues, disabilities, conditions or syndromes have their own websites with a forum built in for just such discussions.

Note: Any suggestions or advice found here or on a message board should not replace your own doctor's medical advice. The idea is not to ignore your child's doctor, but rather to open a dialog about their care. {Personally, any medical professional who is not willing to listen to my concerns is probably not going to stick around long. That is what second opinions are for and a discussion for another day.}

Photo: Bram J. Meijer

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Is Head Start Trying To Force Feed Your Kid?

noreply@blogger.com (Janis) — Sun, 10 Oct 2010 13:50:00 +0000

The other day I saw a tweet from a concerned Aunt (someone I do not know personally). Her 4 year old nephew had just started a Head Start preschool program, but was not allowed to attend school. It seems that he is lactose intolerant, but the school would not allow him to bring his own "safe" snack or food from home. Even with a doctors note he was sent home until it was "figured out".

Now, not knowing ANYTHING at all about the program myself, I asked around to my friends who are Head Start moms.

And it's true Head Start does not allow ANY food to brought from home. Period.

I had no idea.

So of course this had me a bit concerned.

You see, as luck would have it, Austin was recently accepted into Head Start's program. He starts in two weeks. {I'll get back to that right now.}

So if was true that Head Start did not allow food from home...we were in big trouble. There is no way Austin would "eat" at school without some major modification going on.

I resolved to find out on Friday. That was the day I had to go and register him. It took TWO hours. The coordinator, bless her, told me it would take about an hour. But she must have confused me with a "typical" mom, so of course it took twice as long. The registration is tedious and this is the government, so of course everything was in triplicate. (Trees, anyone interested in saving some trees??)

So while we were talking I casually asked about the no food from home issue -- you know for my new friend on Twitter.

And while I understand the principle of the answer, it still made me scratch my head.

Here goes:

Head Start is a federally funded program for low-income families. As such the State provides well balanced meals for its participants (the kids). Cool. However if someone, like Austin or my new friend's nephew, has a valid medical issue that requires food other than the traditionally provided meal, it needs to be documented. Forms need to be filled out. Arrangements need to be made. No one goes to school unless arrangements are made.

This "arrangement" does not include food coming from home. Head Start aims to make everyone equal - sort of. They want all the kids meals to be provided by their own "Food Services". So if your child has ANY food allergy this needs to be stated PRIOR to them entering the program.

During the registration process, a form (or three) needs to be filled out from the doctor stating which foods are NOT safe and which foods can be substituted. So for instance, for my little friend they would purchase and deliver SOY milk instead of Whole Milk and so on.

The key to the entire situation is that they need to know BEFORE placement otherwise Food Services will deliver the same snacks and lunch for everyone. {I am now happy to report that my Twitter friend was able to get the entire situation squared away.}

So...what does this mean for Austin?

Austin will not be joining 20 other ~~germified~~ kids in the ~~cesspool~~ classroom. He will be joining the "homebound" program.

So it stands to reason that if he is in the homebound program then we don't need to worry about this Food Service issue, right?

Well my friend, that is where you and I would be wrong.

I still need to get a form (or three) signed by his doctor as to his non-safe foods and substitutes. They will not be purchasing Boost Kids Essentials to feed him his formula, with the proper documentation they will allow tube feeding in the classroom because it is "medically necessary". Great. But we still need to fill out the forms because what about snack time?

Here's the deal.

The homebound kids are required to do "socialization" visits twice a month and a snack is provided. Snack would be something like apple slices and milk. Er, yeah...um he only eats thinly shredded Monterrey jack cheese, an occasional piece of hamburger bun and very, very tiny cookies made by the fine folks at Keebler. (Bless you Keebler!! -- unpaid plug.)

So I had to fill out a form that said, please do not feed ~~the bear~~ my kid any food that can bitten into or food that won't melt in his mouth or food that is too big. {Serious.} But I also need to be specific because if the form says he can eat a puree texture, for instance, they will deliver him some yogurt. Right. Okay, unless you want yogurt on the walls...do not attempt to feed him that. While he is "cleared" for purees he refuses to eat ANYTHING on a spoon.

And this is the extent of the conversation I am having with the coordinator when she says, 'What about a plastic spoon? Does he only refuse to eat food on silverware?'

I think I may have *snorted*

Oh bless you sweet, dear homebound coordinator. I WISH!

Then she asked me to draw a picture of the size of the food he would eat. I think she thought I was joking.

Exhibit A:

An average chocolate chip cookie vs. Keebler Gripz Chips Deluxe "mighty tiny" cookies. As you can see it would take about 27 tiny cookies to equal one average kid sized cookie.

{BTW I am not saying Head Start is giving your kid ANY cookies. Just using this as an example of how my kid's portion size compared to a typical portion.}

Before his surgery Austin was eating about 15-20 cookies in one sitting. Now, I am lucky if he will "eat" six in a 20 minute time period.

So it will be interesting to see what happens at snack time when Austin shows up for one...in APRIL 2011.

Happy Veggie Kid: Lars Christensen

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Positively Overwhelmed

noreply@blogger.com (Janis) — Thu, 07 Oct 2010 11:50:00 +0000

There is so much going on right now I could not possible do it justice to write about it. Let's just say we have A LOT going on here right now between this surgery, related recovery, work related commitments, testing and school placement. So many things are up in the air, medically and personally.

Right now Austin is not very happy with us twice a day and still dealing with some occasional pain. Obviously you have noticed that I am not posting any pictures...yet. I will try to get to it soon. We have seen the surgeons twice in the past week, and after two possible setbacks things are once again moving along.

I will get back to blogging it all...soon.

In the meantime, I received this note of encouragement today and it seemed appropriate to share.

Poem/Image: Terri Mauro

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Vote 4 Hope Social Good Campaign Continues

noreply@blogger.com (Janis) — Sun, 03 Oct 2010 17:50:00 +0000

I'm blogging over at Hopeful Parents today.

***

Before you leave help me wish my Dad a very Happy Birthday!!

Happy Birthday Dad!!

***

Then take a look in the sidebar --->>>

Please click to help Global Genes Project win a nomination in Mashable's Awards - "Most Creative Social Good Campaign" for Vote 4 Hope.

Thank you so much for all your voting...we finished in 12th place! It was a great effort and we raised awareness for rare disease like never before.

***

Now we need to focus on taking our cause to Congress!

Support our Change.org petition. We must urge our Members of Congress to join the newly-formed Congressional Rare and Neglected Disease Caucus. We need 3000 signatures!!

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