My New York Sob Story

This is my entry for Project Mom Casting. What is PMC? Only the BIGGEST thing to hit BlogHer since...well, since BlogHer.

It turns out some fancy schmancy producers will be in NYC to interview blogging moms for a REALITY show. I know, I know. Call me crazy.

Truth be told, I recently submitted our story for a documentary series on Special Needs families, but we didn't make the cut.

Maybe this time, a single mom raising a toddler with special medical needs and trying to make a difference will be worthy.

I dunno. Whaddya think? Oh nevermind...just please support this craziness one more time.





My name is Janis, and in less than 10 days I will once again be bound for the allure of Manhattan.

I lived in NYC many moons ago, as a starving graduate student. It had always been a dream of mine to live in New York. So like Sally Albright, I packed it all up after graduation and I went to NYU.  I lived with my best friend and set out to pursue a Master's Degree in Counseling and Guidance.

Yeah, I actually planned to help other people plan their lives. Ironic, I know.

To say things didn't work out is an understatement. The short version: I got sick & headed to Student Health, they offered me a ride in an ambulance to the hospital. Yeah, that kind of sick.

The kind of sick that has your medical insurance denying you coverage. The kind of sick that has you sobbing on a plane home within a week. Why? Because you are a student and covered under your parent's policy...but only in California. (Read the fine print.)

Yup, my New York dream and my graduate education were stymied by lack of adequate medical coverage. {Why is this such a persistent theme in my life?} So I withdrew from NYU and vowed never to return to NYC until I was rich, it would all be different then.

Well here I am returning, not exactly rich; in fact, just as broke and under-insured as the day I left. But, this time I am returning rich in experience. This time I have a different set of dreams. This time I am coming with 2500 of my best friends.

Yeah, I'm still single and unlucky in love, but Manhattan is filled with women just like me...if you don't believe me just watch SATC {well, you know except that they are skinny and rich...and probably insured.}

Despite my hasty exit, I'm eagerly anticipating my return. I'm even staying an extra day in Manhattan because I want to walk through Greenwich Village and Washington Square once again. I want to browse the book vendors in Union Square.

I want to pass The Plaza and dream of staying there. I want to window shop at F.A.O. Schwartz and pretend I can actually afford to buy my son something.

Someday.

I still believe it will happen someday. These experiences, these stories I hold, Austin's story...someday they will all be told.


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Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

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Does Anyone Ever Want Bad News?

You know how people always try to deliver good news with the bad news so that it -- I dunno, softens the blow or something. Whenever someone says, I have good news and bad news, which do you want first? 

I always want to respond, 'give me the good news...keep the bad news, no way do I want it.'

Seriously, who EVER wants bad news?

And then there are people who just mix the bad news right in with the conversation and hope you don't pick up on it. (Mostly doctors.)

I'm generally a good news first kinda person. That's how I deliver information and how I like to receive it. (Take note, doctors!)

When it comes to Austin I think sometimes we are used to dealing with so many setbacks, that the inchstones get overlooked. {Also, sometimes we just have so much going on I forget to update you at all. My bad.}


So here we go:


Good news: Austin is doing pretty well on his new 'diet'. He is actually asking for food at least twice a day.
Bad news - He is not actually EATING any more than before. A lot of food is being pocketed.



Oreo cookie evidence


Good news: He is really drinking from his sippy cup like a champ.
Bad news: He liked juice a little too much, so we had to switched him to water.


Good news: He really hasn't complained.
Bad news: He doesn't drink as much water as he did juice. (So I guess technically, he is silently complaining.)



It's water with Crystal Light - the fake out "juice"


Good news: Occasionally, he is willing to drink the new formula (Boost Kid Essentials 1.5) straight from the box (similar to juice box).
Bad news: The new formula may actually be "too rich" for his system and we may need to switch back to the old formula.


Good news: Austin got fitted for new AFOs and they are ready to be picked up this week.
Bad news: Austin got fitted for new AFOs because his PT noticed his arch was underdeveloped and he still needs ankle support.
Very bad news: This means that ALL his shoes will no longer fit and now need to be re-purchased to fit over the new AFOs.


Good news: The new BAHA is here. (More on this in another post.)
Bad news: The new headband is not.


Well I think that's enough for today...oh yes, I have more.


Do you have any good/bad news to share?



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Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

Places to Peek This Week

In a bit of Austin related news, we have an appointment with the Plastic surgeon tomorrow (yes, Saturday) to get the final sign-off and hopefully a date for his Jaw distraction surgery next month. Please send us some good thoughts. This morning (weather permitting) we are off to enjoy the beach!



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Exciting news!! I have been invited by Children's Rare Disease Network to blog with them. Yay me!! My first post about Privacy vs. Advocacy. Hope you'll check out some of the other information & resources.





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I reconnected with my friend, Sarah, this week and my 5 Minutes for Special Needs post was about her daughter Mila. Check out her cuteness!!





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Speaking of cuteness check out the pictures on Early Childhood News, in honor of National Hug Your Kid Day, July 19th.

Cute! cute! cute!


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This is the LAST day to vote for Bunchland's BlogHer contest.




I would really appreciate it if you could please take minute to register and vote for me today.

***IMPORTANT*** You may vote ONCE per hour.

I want to THANK everyone who has voted this week so far. I have to give a special shout out to my friend, Juliette for rockin' the vote on Twitter like a maniac.


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In other news, I published an article on She Posts about the awesome Twitter Charity hats that Mommy Perks is wearing.


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And lastly, my post to win a trip to BlogHer (writing contest) was chosen as a finalist. The winner will be announced sometime today. Although I don't expect to win, it was nice to be recognized in my category.


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Have a great weekend!!



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Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

Send me an email (click on the little @ globe in the top right corner) with your name, email address, blog url and your favorite inspirational saying and you can possibly be featured on Just Sayin' Saturday.

We Are Not A Zoo Exhibit, Move On!

A few months ago there was a Twitter storm about a mother breastfeeding in public in a certain LA store. An apparent unauthorized rep from the store went on Twitter and said it was not okay. Bad move.

This unleashed a firestorm of breastfeeding moms to bash the store. And then a flurry of posts on opposing sides, one even went as far as suggesting that children should be left at home because other people don't want to be uncomfortable while shopping.

I am not a mom who takes her toddler into stores often. As a matter of fact, I can count on one hand the number of times my 2yo has EVER entered a store with me.

It's not because I am afraid people might stare at him for throwing a tantrum or worse stare when I feed him in public. I know they will. Matter of fact, they usually stare the minute they see him. Who wouldn't...he's freakin' adorable! It is something we deal with regularly, children point and their mothers hush them.

I have to admit I am one of those moms with a walking, talking toddler who feeds in PUBLIC. I dare someone to tell me it's gross or wrong. Oh please do.

You wanna talk about uncomfortable?

Try TUBE FEEDING your toddler in public. Trust me if there is anyone who is more uncomfortable about it than me, please step forward.

What makes it uncomfortable is you standing around staring.





It would be more helpful if you at least offered to lend a hand. It's not always easy hooking up a long plastic tube to your child's belly {whoops, careful now - don't show too much skin}, attaching a 60cc syringe, then using your free hand to open a can of formula {which happens to be made by Nestle} and "feeding" your child because he can't/won't/doesn't chew and swallow food like your average toddler.

No biggie? Now try doing that at the mall, the zoo or Disneyland and see how it goes.

If it's so uncomfortable then, for me then why do I do it?

Because its really simple, the child needs his meals on a schedule that may happen to coincide with your trip to Disneyland, Target or the zoo. We do this 3 times a day. We actually prefer not to have an audience, but I can't control you.

And no, I don't want to walk all the way to the end of the theme park to feed him in the First Aid department or the bathroom or my car. Where do you do feed your toddler? Yep, that's right...in public.

Oh and the reason he doesn't go with me on short trips to the store is not because he is a royal brat, who might tantrum his way through Target. It's because it would also require a nurse and at least 2 medical machines, which take up alot of room and let's face it Target carts are just not big enough for all that on top of my shopping loot.

So yes, I see you; the lurkers, the whisperers, the gaspers...don't pity us, go do your shopping and enjoy your day. Let us be.


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Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

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Good Morning, You're Fired!

I feel that I MUST preface this by saying that I do appreciate the awesome job that our two current day shift nurses do. That said, boy oh boy has this past week been a doozy with Nursing issues.

Back in April, I wrote about how we had a nurse who went on vacation and I wasn't sure if I wanted her to come back. Well once her replacement overdosed Austin and then lied about it...I changed my mind about the vacationing nurse. She did return.

Over the past two months her performance has been lackluster and I actually caught her with her eyes closed...not a momentary head nod, but a real it-looks-like-I'm-sleeping eye closure. It turns out she has a bit of an issue with sleeping at night because she may or may not have been out at a local card club and then came to work at 6AM. So after that 'I may or may not be asleep' incident I asked the Agency to let her go.

It is never any easy decision to lose a nurse, especially one that works full time and has been here for several months, but I had had enough of the "last minute calling out, no-show, I'm too tired to work" routine. I just could not take my chances with her falling asleep on a day I wasn't home or EVER!





A good nurse is (apparently) hard to find. So imagine my surprise when the next call from the agency is 'we found someone to fill the extra hours.'

Well this someone showed up 3 hours late to her first training shift. She stuck around for 5 hours during which time she watched our current nurse do her job. She never once spoke to Austin or made any physical contact with him. Never. She never asked any questions about his care and really only seemed concerned that there was too much 'play time' and that his bed time was too late. (It's 8PM.)

Sometimes you just get a vibe from someone and know they are not going to be a good fit. She seemed too distant and just not the right caregiver for a spry 2 year old. Austin was doing his best to entertain her and she did not so much as crack a smile...really? Not one comment about how cute or smart or creative he was. Nothing. I just found that really ODD.

I didn't expect her be fawning all over him, but to not so much as smile when he does his cartoon character imitations or dances wildly around the room to music only he can hear...well that shit is funny. At that point I was thinking, I'm not sure she is human.

Kidding. Sort of.

Throughout the day I never got to really know her at all. After she left for the day I was just not really happy with how things had gone. I mulled it over and called the agency to ask her not to return for her second training shift. They said they would take care of it.

So why did she show up again the next day? Late, again. UGH.

The Agency was closed (of course) and the After Hours doorknob scheduler had no clue about what had transpired the previous day. She tried calling her cell phone, but it went straight to voice mail. So at 8:30 AM I had to go and break the news myself. Without so much as a brush through my hair or a cup of coffee - I had to fire her. AGAIN.

I was almost willing to let it go - you know take it as a sign that I had been hasty in my decision and give her a second shot.

That is until I walked in the room and found Austin playing with the other nurse and the trainee sitting in a chair, legs crossed with her text book in her lap and a highlighter in her hand. At which point I shot fire out of my nostrils asked her to pack her books and go study at home.

Like I need this.

I know I am not the only alone with Nursing issues. It just boggles my mind with all the stories we have heard from others and experienced ourselves. How do these people stay employed? And better yet, how can they possibly be in a profession where CARE and ATTENTION are required? (If not, absolutely essential.)


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Photo: Katya Mikhlin




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Do you have... A favorite quote to share about overcoming adversity? A saying that inspires you or others? A special needs blog that needs some love & attention?

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What In The Heck Is She Talking About Now?

In order to demystify my world a little bit I am about to crack the code let you in on some FAQ. I realize Special Needs (SN) parents speak and write in our own lingo.

Here are some terms I use regularly in my articles that you may not be familiar with (in no particular order, except for the ones that are obviously in alphabetical order.)

PEOPLE:

The Breakfast Club: A name I gave to our Intensive Feeding Therapy Team. You can read all about them here and here and here. It is quite the ongoing saga.

And as long as we are mentioning sagas...let's talk about the {former} Nurses, shall we. I know you may have a hard time keeping them all straight.

The Pointy Nurse

The Smoking Nurse

The Choking Nurse

The Overdose Nurse

The Nurse I Stalked

(You're welcome.)





OT: Occupational Therapy. Trained personnel who focus on teaching every day activities through play. We focus on Eating & Drinking.

PT: Physical Therapy. Trained personnel who focuses on developing Gross Motor Skills and muscle function.

Pulmo: A doctor specializing lung function. Also know as the Head Honcho who runs this show.

GI: A doctor specializing in stomach, gut, intestinal function.

DHH: Deaf & Hard of Hearing; a teacher/program provided by a school district to teach ASL and deaf culture to children & their parents.


PLACES:

Who am I kidding the only place we regularly go to is the hospital. Boring.

Although there was that time we went to Disneyland

Lest we forget what happened at the Petting Zoo

We had the most fantastic experience at Build A Bear and The Beach.


THINGS:

AFO: Ankle Foot Orthotics - aka: Braces

ASL: American Sign Language

Aural Atresia: Medical term for missing inner ear canal

BAHA: Bone Attached Hearing Aid, pronounced like Baja but similarity with Cabo San Lucas ends there.

Branchio-Oto-Renal Syndrome: A genetically inherited disorder adversely affecting several systems of a developing fetus: Branchio = neck, Oto = ears and Renal = kidneys. aka BOR.

Broncho Pulmonary Dysplasia: Another fancy name for Chronic Lung Disease.

Extension: long tube used to deliver meds, formula or water to stomach via Mic-Key, nothing to do with phone or Kate Gosselin's hair.

Go-Bag: A bag that must be carried at all times containing emergency medical supplies in the event of Trach or Mic-Key removal.

Hemifacial Microsomia

MBSS: Modified Barium Swallow Study - a very expensive look at your anatomy (mouth/throat) function via X-ray vision. Requires you to eat radioactive food.

Mic-Key: Gastrostomy tube site, nothing at all to do with Mickey Mouse. aka: Mic-Key button.

Microtia: medical term for missing outer ear (pinna)

PulseOx: A machine that measures Oxygen via a probe attached to toe or finger. Also measures heart rate. Usually found in a group of other equipment.

Sleep Study: Usually an overnight study done in a hospital or lab during which different brain and breathing (respiratory) functions are measured using a ton of wires attached to the head, face, and chest. A therapist watches you via night vision. aka Sleep Deprivation Study to those of us who attempt to sleep.

Trach: Tracheostomy tube. May be referred to by maker ie: Shiley or Bivona.

URI: Upper Respiratory Infection

This list is not meant to be all encompassing and may be added to from time to time. It is also MY list for explaining things & people in our lives, so other SN parents may have different frequently used terms.

Do you have any things that need explaining too?


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Save The Drama For Your Mama!

Austin has a flair for being a tad dramatic. {He doesn't get that from me! *cough*} So last week when I heard the screams coming from his room I did not jump from my seat until the Nurse called me over.

Then I saw it. Blood.

The nurse decided to cut his nails after a bath. Big Mistake.

1. Usually I cut his nails.
2. The conditions for doing so must be perfect.
3. She has never cut his fingernails before.
4. She cut off a chunk (okay, a tiny piece) of his Thumb.
5. He bleed FOR.EV.ER (or maybe 30 minutes)
6. The blood could not be contained with band-aids.

Let's just say it's a good thing we have medical supplies hanging around.





It was totally an accident. She felt horrible about it, but Austin would not have anything to do with her for about an hour after that incident. He wouldn't even let me take picture. Drama, I tell ya.


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A Brief Conversation About Death and Honesty

We had one of those teaching moments and to be honest it totally caught me off guard. I'm sure I've mentioned before that my nephew and niece, ages 7 and 6, love to hang out and play with Austin. They shadow him, even when he has to go get his diaper changed or get his meds they follow along to keep him company and "help".

So on Father's Day it was not unusual for them to tag along while I gave Austin his 7PM meds.

Then the questions started.

Kid 1: What's that?

Me: This is his medicine.

Kid 2:  Medicine? For what?

Me: This is for his tummy.

Kid 2: Is he sick?

Me: (Avoiding the loaded question) This medicine helps his tummy feel better.

Kid 2: You know, sometimes babies get sick...(looking concerned)

Kid 1: Yeah and you know what? Sometimes sick babies die.

This is where I realize I have totally underestimated their intelligence on the subject of Austin. Then I started wishing we weren't having this particular conversation at this very moment, without their parents present. But in the absence of any other adult approaching to save me, I decide that honesty is the best policy.

Me: Yes, sometimes sick babies die and that's sad. But not THIS baby.

Pause.

Kid 1: Good.

Kid 2: Yay Austin!

Whew! Yes, indeed. Good.

I have no idea where that line of questioning came from, but hopefully it (Austin dying) isn't something they will continue to be concerned about.  I'm so glad they accepted my on-the-spot answer and  that we ended on a happy note. I'll leave the rest of the discussion to their parents.


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Father's Day - What Can I Say?

I'm sure someday Father's Day will be harder to deal with when Austin is old enough to ask questions and realize the difference between the words Dad and Grandpa. For now the signs in ASL are close enough and he doesn't even use the sign for Dad or realize that he doesn't have one in his everyday life. That will not always be the case, but it works for now.

Today I read something that made me realize I have it easy now. I shape Austin's world and he has no clue what he is missing. But the truth is that for children raised without their father life can be difficult; especially when you CAN grasp the complexities of why your father is not in your life and you do know what you are missing. Hallmark truly does not make cards that express what Libby is going through. I wonder if Austin will feel that way some day?





What else can I say about being a single mother on Father's Day that hasn't already been said so well by Christine and Shara?  Eh, it ain't all its cracked up to be. But its only one day, so by no means am I cursing fatherhood while hiding under the blankets, sobbing and tossing back bonbons today. You see, while my son may have a out of state father, I sure don't.

I have a very involved family, as a matter of fact, so we will be celebrating today. There will be grilling, and children running through sprinklers and wine, lots of wine.

We will be celebrating ALL Dads. Austin has a loving Grandfather who is in his life every.single.day. He also has a Great-Great grandfather, plenty of Uncles and a very giving Godfather who he connects with on a regular basis.  Not to mention me.

By no means is he missing out on love, attention and the required roughhousing a 2 year old boy needs. Austin is growing up much loved, even by his own father, in his own way.


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The Saturday Evening Blog Post - May 2010

Welcome to THE SATURDAY EVENING BLOG POST, where bloggers gather on the first Saturday of each month to share their personal favorite blog post from the previous month, hosted by Elizabeth Esther.








May was a busy month around here. Two nurses on vacation and Austin happened to get a really bad, case of something that turned into nearly 10 days on him requiring Oxygen 24/7 and some pretty powerful antibiotics. There were way too many long nights. I It was a mess.

Right smack dab in the middle of all of that we celebrated our 1year Blogoversary and Mother's Day. On both occasions I was reminded that many mothers have walked in my shoes. My choice for my favorite blog post was an easy one: Where I Draw My Inspiration.


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The Power of Love And Loss

Day in and day out I write about the things on my mind and occasionally, I write about the things on my heart. It probably seems more so the latter lately because I am having to make difficult decisions about Austin's medical care that are complicated and risky. Sometimes the risk is paralyzing.

Two and a half years ago these defining moments seemed so far away.





I know more now. I accept more now. But I also worry more now. I'm just not sure I am ready to say goodbye yet. Because that is a risk. However small, it does exist. To help myself get past the worry I try to focus on the benefits that these changes will create for Austin. But still, it's always sort of there.

On nights like tonight, when I learn that someone is preparing to lay their sweet baby to rest, I just stop in my tracks and thank God that we have made it this far. There were so many moments when things could have gone wrong and I could have been that mother

The one who lays her child to rest. I don't ever want to be that mother. No one does.

I am truly in awe of those with the inner strength to take something as tragic as losing a child and to turn it into something more, an act of goodness, of grace. I'm speaking of course, of the mother who starts a foundation or a non-profit and inspires others in the memory of her child. The mother who blogs, shares and puts her pen into action to record a life worth knowing. The mother who forms jog-a-thons, runs a support group and holds the hands of other families. Those mothers.

If there is one thing I have learned on this special path, it is that mothers instinctively fight for their children. Sometimes they are worn and tired from the battle, but they keep on going. Sometimes they acknowledge that they need to lay down our weapons and cuddle up next to our children as they take their last breaths. I know too many of those mothers.

I hear their stories and I ask myself the very question that I get asked. How does she do it?

And of course I already know the answer.

Margaret Rudkin knew the answer too. Not long ago I read Margaret's inspiring story and felt a sort of kinship to her. You see, she was the mother of a child with severe food allergies and asthma. Her son was unable to eat most processed foods and feeding him was a challenge. I know that challenge. I live it everyday, for different reasons, but the frustration is there.

Margaret, like so many special mothers I know, was determined to help her son thrive. She put him on a special diet of fruits and vegetables and tried to eliminate processed foods from his diet. Some might have called her an organic mom, before it was even popular. In an attempt to help her son get healthy, she decided to take matters into her own hands {literally} and bake him bread. She had a revolutionary idea - using whole grain ingredients, why not bake the vitamins and nutrients right into the bread? When her son started to thrive, the doctors who had written her off soon began singing her praises.

Did she do it because she liked to bake? No, in fact she had never baked before. Did she do it for fame and fortune? Hardly, it was 1937 and the World was about to go to war. She did it for one reason and one reason only, for her child's survival.

I'm sure if she had sat down at her kitchen table and explained to her family that she was going to start a multi-million dollar company they would have laughed. She did not set out to create Pepperidge Farm, it was born out of love for her son.

The most cherished things are born out of love for our children, be it bread, blogs or books.

I have written this post as a part of Blog Nosh Magazine's carnival Celebrate the Heart and Art of Motherhood.


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Will You Please Put My Son In The Hospital!

It's no secret that I avoid inpatient hospital stays like, well the Plague. So why then, you might ask, am I willing to beg for a hospitalization?

I assure you, I have not lost my ever lovin' mind. Not yet, or at least not officially.

Now we all know that Austin's trach won't be going anywhere anytime soon. But in the meantime I'd like to see more progress on other fronts.

One of those front is EATING. What so many other parents take for granted, just doesn't come easy for Austin. There were no wonderful moments of bonding while breastfeeding for us. To be honest there really was no bottle feeding bonding either.

There were a lot of late nights and alarm clocks. Austin had to be fed every 2 hours around the clock. On doctor's orders each attempt could be no longer than 15-20 minutes or he was burning more calories trying to eat than he was taking in.While an average newborn might take 30cc in less than 10 minutes and gradually increase the volume, Austin struggled.

There was a note pad on the fridge that listed his progress. It read something like this:

3am 15cc
5:30am 22cc
8am 17cc
9:30am 23cc
you get the idea...

Frankly it was depressing as hell. Every attempt was racked with frustration and sadness. He just did not "get it".  From Day 1 he had a poor suck-swallow reflex. It was dismissed as something that happens to babies born too early. But when I really think about it, it makes sense that his lungs are so crappy. He probably never swallowed enough amnio fluid to do whatever amnio fluid does to help build up the lungs in utero.

In hindsight the worse thing I ever did as a parent was wish him out of the NICU too soon. Yes he held his sats and "seemed" to finish a bottle on his own. But there was something very wrong and it went undetected for far too long.

Two and half years later I am finding myself desperately trying to correct that problem.



I have spoken extensively with both his OT (feeding therapist from his in home program) and his SLP (feeding therapist from his outpatient hospital based program) about his slow progress. And it is SLOW. But now with his recent gains in passing his MBSS there is nothing holding him back from eating.

Yet we seem to be stuck on volume. Austin will try just about anything, but eats only a few bites before he declares himself done. Every.Single.Feeding. He has learned to drink from a straw and will carry around a sippy cup, but only drinks when prompted and not nearly enough to sustain hydration.

So the tube feedings continue.

In light of the fact that he will be starting school in 6 months and our OT services will be cut, I am feeling  increased pressure to have him EAT as a typical toddler. I know he he likes "the idea" of eating and if he sees other kids eating he does attempt it, but its never enough.

He needs an intervention.

Thus I have contacted a local feeding team and I am asking them to evaluate Austin for their program.  Their program is inpatient. So yes I am reversing my stance on inpatient stays - just this once. My hope is that we can get on a waiting list of some sort and that sometime this summer they will accept Austin.  This would require the BOTH of us to live in a hospital for at least 3 weeks of intensive feeding therapy, maybe more.

His SLP is in full agreement with this plan. His OT is on the fence, but understands that in 6 months we will be on our own and our best chance to catch him up might lie elsewhere.

Editors note: I started this post about 2 weeks ago, on the day I contacted the feeding clinic via email.  I saved the draft hoping to finish it up soon. This past Friday I was contacted by the feeding team. They have a last minute opening and our evaluation is tomorrow. We will go and learn about the program and see if it's a good fit. I am excited and scared. But I am going to reserve my final decision until I have all the facts together. {Obviously.}


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A Common Cold = Chaos For Sick Lungs

Austin has been sick this week. Really, really sick. I have had phone calls daily for status updates that's how bad it has gotten.

I'm concerned.

The nurses are concerned, even his Ped called today to check on him. We were just there yesterday.

It has been a long time since he has been this ill. I measure illness by vital signs. We are dealing with increase respirations, increase heart rate, fever, wheezing, coughing, yellow secretions and low sats. He is on round the clock breathing treatments, heavy duty antibiotics and needs oxygen 24/7.

His primary nurse had a sore throat ten days ago. Then, like clockwork, 7 days ago he started coughing. And BOOM! Pneumonia.

Every virus that comes through here lands in his lungs. And, well you get the idea. It's bad.

There was brief talk earlier this week of a hospitalization, but fortunately he was able to stay home. Which doesn't make him any less sick, or us any less busy. So needless to say I am running on empty.

We have no night nursing. Never have. But I'll tell ya it's weeks like this that I seriously consider it. The days have been bad, but oh the nights have been downright scary.

Speaking of which, I actually pulled out the Ambu bag the other night. I have never done that before. Talk about a surreal moment.





How do you keep from running yourself ragged when your kids are sick?



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photo: Monika

Traveling With A Special Needs Child

Every single thing on this luggage cart {except for the black dress} was for Austin.

For one night away! Jealous much?



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I Have To Admit, I Lied.

Some Mothers Get Babies With Something More

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.



Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Author: Lori Borgman; Photo: YvesBonnet


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The Saturday Evening Blog Post - March & April

Welcome to THE SATURDAY EVENING BLOG POST, where bloggers gather on the first Saturday of each month to share their latest and greatest blog posts from the previous month, hosted by Elizabeth Esther.




This month features my favorite posts from March and April.

Looking back at my March archives it was not too difficult to chose which post to highlight. I had an awesome opportunity to participate in a writing contest. My entry was chosen as a Top 10 Finalist. Not too shabby, eh? I wrote about my loving Special Needs community.

Unfortunately, I got word this morning that I was not the Grand Prize winner. But that's okay, it allows me more time to devote to writing and advocating right here.

April was another story altogether, so many things seemed to go wrong last month it was really hard to narrow down just one post to highlight. It was a particularly jumbled month, both medically and personally.

But in the end, I did decide that the medical diagnosis post would probably be most helpful to new readers wondering, what makes this kid so special?

On a positive note, in April I began writing a weekly blog over at 5 Minutes For Special Needs. I am having a fantastic time as a contributor, every Thursday.


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Full Speed Ahead

Today is Blogging Against Disablism Day, around the web posts will be written reflecting different perspectives on the topic of disability discrimination. Please do take some time to read them.





Tomorrow Austin will be 2 1/2 years old. Time has flown by at an extraordinarily fast rate. And it is so true, if you blink you miss it.

Of course there are many moments in the past when I wished I could have done just that, blink. If I blink I will miss this...then it never happened. Unfortunately life doesn't work that way.

We've had a rough two weeks. Heck, I'll say it, it's been a rough two and a half years!

But I am determined not to let these latest setbacks chart the path. Yes, he has to keep the Trach for a lot longer than I ever imagined. Yes, it is clear I need to continually monitor his care. Yes, we are in a dire financial situation.

No, we are not stopping.

I will keep advocating for better care, better equipment, and a better plan.

I will not allow other people to get me down or drown me in their pity.

I will continue to find strength in my community.

I will continue to celebrate the inchstones and the anniversaries.

I will keep writing, encouraging, motiviating, and offering to this wonderful cause.

I will be there to support you when you are down.

There is great strength in our community, I am reminded of that everyday when I read the beautiful and supportive comments. Rest assured, I am facing the coming days with my eyes wide open. I don't want to miss a moment of this great journey.


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Scavenger Hunt? - Wordless Wednesday

Can you guess how many objects I found tossed behind the crib and the changing table?

a. 19
b. 29
c. 39
d. 49
e. None of the above







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Mamacare vs. Obamacare

There are some choices no parent should have to make. As Greg so eloquently stated in his post on health care, groceries vs. doctor appointments tops my list. Well, the good news is that inhumane dilemma looks to be off the table for good. The bad news? For some, it's too late.

Most parents would give anything to have their children with them tonight and would gladly go hungry to make that happen.

There is a lot of conflicting information out there about health care reform so I am not going to add to that. It baffles me to read that some people are so upset about this Bill that they are focusing their argument against reform on "people who are lazy & on welfare." {For the record, I am neither...not that it's anybody's business.}

So many people seem to be forgetting that millions of Americans who will benefit from health care reform are hard working and underinsured. These forgotten people are paying a hefty price, often bankruptcy, with little sympathy from insurance companies.

True story: I have over $20,000 in yet unpaid medical debt incurred during Austin's first six months of life. Now some might say, oh $20K is nothing. And to you, I would say, please make the check out to Janis C… {just kidding, sort of.}

Before Austin was born I worked professionally for nearly 20 years and paid into the Medicaid system never expecting to reap a dime of benefit until I was well into my old age. {Ahem!} I have gotten those letters from Social Security that let me know how much money I had earned and how much my dependents would earn if I were ever disabled or died.

Little did I know that my only child would someday be forced to Medicaid, but not because I was lazy, on welfare and uninsured, just the opposite in fact. I was fully employed and woefully underinsured!

I didn't even realize there was such a thing as underinsured, until the bills started rolling in. I know better now.

At the time of Austin's birth we lived in the great State of Texas, which in my opinion has a low opinion of taking care of its sickest children.





Sure they have waiver programs for those who don't qualify for Medicaid, but the waiting list is 5-7 years long. That is unacceptable, who can wait that long for medical coverage? I notified them when we moved to California so they could make room to move one more person up the list.

Sure they offer financial counseling in the hospital, but I was informed {with a straight face} that for my income level I would need to have 5 more children before Austin would qualify for any assistance with his medical debt. {insert eyeroll}

As a single mother raising a child with a life threatening condition it was unbelievable how many doors were closed to us, all because I was employed and owned my own home. Do I blame the government? No. Do I blame the people on welfare? No. I blame the broken health care system.

More specifically, I blame United Health Care (UHC) for not seeing the sick child beyond the numbers. I blame them for denying coverage for everything from hearing aids to Skilled Nursing. If only they had covered Skilled Nursing care in my home I would have been able to continue to work, to contribute the $400 per month to my employee medical plan to cover my son. Not to mention, pay my mortgage, make my car payment and employ my gardener.

If "Obamacare" had been in effect two years ago I would have been able to pay out of pocket for an insurance plan that would have been more comprehensive than that offered by my employer for about half the cost. I know this because I applied for just such coverage for Austin.

UHC, which covered Austin under my employer's plan, sent me a letter stating that if I wanted to purchase a separate plan they would be glad to offer him coverage for anything EXCEPT for anything related to his ears, syndrome or Craniofacial surgeries. (Read: Uninsurable due to pre-existing condition.)

THIS WAS THE SAME COMPANY! He was "suddenly" only insurable for well-baby care. FU-UHC!

Again, as a single parent with no family in Texas and no nursing care for Austin while I worked, an unfortunate chain of events was put into motion; these events led to me losing my employment (no childcare, no FMLA, no more vacation days), my home (no income to pay mortgage), my savings (escalating medical debt) and my excellent credit rating (unpaid medical debt, housing debacle). We became a health care statistic.

Unfortunately, at the time, the only option left was "Mamacare", Medicaid, a cross country move to California and my family.

So yes, I am excited about this new health care reform, as Austin is one of the children who could benefit, as early as September according to the Wall Street Journal.

The good news: I will never again receive a letter from an insurance company stating that my child is not insurable.

The bad news: This Bill is two years too late to save my home, my job or my savings. Those things are all gone.





But thanks to Mamacare, my son is still alive.

I'd do it all over again if I had to, but thankfully I never will.


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The (Life Of The) After Party

My sisters are going to have a good laugh with this blog post title, because I'm so NOT! But it's my blog and I get to say whatever I want, so humor me.

This past week was a real rollercoaster for me. While some great things happened for me professionally, it was a pretty low week for me personally. I'll hit the highlights.

I participated in 5MinutesforMom's Ultimate Blog Party and found so many great new blogs to read and gained some new readers myself. {Welcome!} Everyone who visited was complimentary about Austin and this blog, which was really nice to read.

A few of my new UBP favorite reads are:

1. Twofermom
2. 4Tunate
3. Tractors and Tire Swings

I hope you'll check them out.

The Ultimate Blog Party was a blast! As a matter of fact, today I found out I won a $50 gift card to Build A Bear. You may recall, we took Austin last summer and his dinosaur had some major surgery. Next time he can get his own bear and some more costumes.


*****


On Monday I woke up to this:





OMG! Amazing! I was floating all day. I posted an entry for the Mabel's Labels BlogHer contest last month. While I had hoped it would catch the eye of the judges, I knew the competition was pretty stiff. There were 136 entries, and i am in the Top 10. I still have to wait until May 1st to find out who the Grand Prize winner is, but honestly just getting this far has been a DREAM!


*****


On Thursday nights I try to attend the #LATISM party on Twitter. It's a very supportive group of Latinos in Social Media and the topics range from the Census, to raising money for the Chilean EQ victims, to personal/business finance. The party starts at 6PM PST and that's usually dinnertime here. So I always end up at 'the after party' where we chat about whatever stuff we all have going on in our lives and on our blogs. This past Thursday they had a special after party giveaway.

On Friday I was delighted to see this:





*****


It was a bittersweet week for sure. If you missed the lowlights you can read about the results of Austin's sleep study or the nurse who overdosed him.


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