He Loves Me

My absolute favorite picture of Austin taken in 2009.




Happy New Year Baby!!!!



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Medical Mumbo Jumbo - 2009 Finale

Well it is time to wrap up 2009 . I figured this would be a good time for a run down of what has been happening lately with Austin's medical team. We have been busy with specialists since our last medical update in September .




October:

Genetics: On a rainy October morning, we had nice, long {insert sarcasm here} visit with the Gene squad @ Cedars Sinai. We were referred to them because they are the same Genetics team that worked on my brother's case, back in the day.  The team was excited to meet Austin, but long story short, nothing has changed. We were hoping some new tests would determine once and for all that Austin's genetic profile matches Branchio-Oto-Renal Syndrome. The results are in, the answer is No .  So we are still going on a "clinical" diagnosis. The important thing to note is that this changes absolutely nothing in his current treatment.  The CSMC Gene squad are now attempting to have some researchers in Iowa take on Austin's case. It could be months, or even years, before they are able to give us any further answers.


November:

Gastroenterology: This is always a fairly quick and painless appointment as Austin has no ongoing GI issues - well unless you count the G-tube. It is more of a "Hey, How ya doing?" kind of appointment and often seems pointless, but we have to go in order to keep receiving his enteral (feeding) supplies. So in late November we went, he has gained some weight since we changed his feeding regimen and that is very good news.

The GI and I discussed some retching issues that had seem to resolve. The test to help determine a problem would be an upper GI. She felt that doing an upper GI would be just "more radiation" and we should avoid it whenever possible. I agreed and we decided to just watch the problem.

Then one fine Sunday in December blood come out of his G-tube during a routine venting procedure. Not good. So much for no ongoing GI issues.  Our Nurse and I decided since it was Sunday and a small amount we would watch it and see what happened. It continued and the following day I was very worried for his tummy, but he seemed fine other than some slow motility (digestion). Along with the blood (which looks like coffee grounds) he had some delayed gastric emptying - which just means that his food was still in his stomach longer than normal. More information than you wanted? Sorry. So needless to say his GI doctor was going to get her opportunity to shine.

A quick call to Children's Hospital and a few hours later we had a new Rx for Austin. He is now taking Carafate to coat his tummy. And yes, by the time he started taking it the blood was already gone, but better safe than sorry. Carafate is a medication often given to people with stomach or intestinal ulcers. Does Austin have them? We don't know, but the blood came from somewhere and it would take Radiation and a LOT more blood to get to the bottom of it. As I mentioned we are trying to stay away from Radiation.

Pediatrician: In November Austin had his 2 year check up. And the good news is with the exception of his Expressive (spoken) language he is pretty much right on target with his peers. We don't need to go back to see her for another year. HA, HA. We were back two weeks later for the 2nd H1N1 shot. And then again, two weeks later for Thrush.

Ok yeah, my two year old who doesn't even drink a bottle got Thrush. From where? No clue. So now we have another lovely medication to treat that. Actually, I feel kind of bad because I had no idea he had it. It began the same weekend as the GI bleed. I am good at diagnosing lung issues ; if you have pneumonia I am your gal, but a typical baby germ like Thrush and I am totally out of my element. Go Figure.


December:

Neurosurgery: Our appointment got cancelled twice, almost three times, before we actually got to see the Head dude. Just like the GI doc this appointment is ALWAYS quick and seems totally unnecessary. The long and short of it - Austin's head has slowed growth, good news. Dr. Neuro feels that Dr. Genetics overstepped his bounds a bit with the whole "cervical spine issue" this summer and believes there is NOTHING to worry about. He said if I REALLY wanted him to he would order a CT scan, but again that is "more Radiation". Then he pretty much promised that even if  Austin did have a congenital anomaly with his cervical spine, he will do nothing to correct it. Well that kind of sealed the deal, no CT and we go back to see him in a year. YAY one less doctor (for a year.)

Otolaryntology: Of course, the one appointment I dreaded the most went fairly well. Score! I don't often see eye to eye with Austin's ENT , but he surprised me this time. He agreed to a DL&B (direct laryngoscopy & bronchoscopy) for Austin to be completed before his next sleep study. A DL&B requires sedation, but the procedure is done in outpatient surgery. What it comes down to is a scope in Austin's airway to determine any underlying issues *if* the Trach should be removed. If everything is clear and his chin has grown enough to support his airway we may be able to have the Trach removed sooner rather than later. BUT, and it is a BIG one, we still have the issue of his Chronic Lung Disease and that needs to show some improvement as well, before the Trach goes anywhere.

So that's why it is important to get the DL&B done prior to the sleep study on February 8th. If all goes well, Dr. ENT will request for Austin's Trach to be capped during his sleep study. Being capped means that he would spend the night breathing through his mouth and nose for the first time in two years, he has had his Trach since February 1, 2008. Of course this all assumes that the stars align perfectly. Excited? Me, too.

Audiology: Austin was booth tested again. He still hears about the same as he did in June '09; with his BAHA he has a normal/mild hearing loss on paper . The concern is that since his speech is not really improving rapidly he does need the 2nd BAHA. The insurance denied it this past year, but we will test him again in April '10 and then submit the paperwork again. This next time we will have three more tests behind him as evidence of his ability to hear, but not differentiate the sounds needed for words. We need to practice for the next booth test at home. In April he should be able to follow directions and place blocks on command.

Well that about wraps up the Medical portion of our program. Stay tuned for a therapy update soon, boy this end of the year stuff is really wordy, sorry.


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Looking Back At 2009 - Our Best & Worst Moments

Looking over this past year it was pretty easy to figure out our best & worst moments. Although this blog is only 7 months old we have had some doozy moments.

But let's start with the fun stuff shall we? I would say almost all of our best moments have a common theme: Family. Austin and I are lucky enough to have the support of my family behind us. I don't talk much of being a single mom, but honestly it sucks a whole lot of the time. What makes our lives easier is having a loving family to help.  We are not perfect, but we sure know how to have fun. Austin has cousins he adores and lonely is not a word in his vocabulary. From fingerpainting to museum visits to Disneyland he has had a blast this year.



Now on to the not so good stuff. Most of our worst moments also have a common theme: Medical. If you have been reading long enough, I don't suppose you are too surprised to find that our worst moments involve medical mishaps & our nursing personnel. I cannot wait until either issue is no longer a part of our daily lives.  But until then, I hope to be able to continue to find the humor in it.


May:

The King & I

He Can Hear!

Total Communication


June:

Front Row Seats For Disney

Orthotics & The Quickest Appointment Ever!

Just A Typical Day

Eleven Hours





July:

You Don't Have To Yell

Feeding Austin

Quick Medical Update

The One Where I Whine About the MBSS


August:

Another Surgery

Once Upon A Time

Beyond The Face Is A Heart

I'll Tumble For Ya


September:

I May Have To Give Up Sleeping or Coffee

Been There, Done That!

Deaf Awareness & The Pointy Nurse

Walking & Talking





October:

How Dinosaurs Became Extinct

You Don't Mess With The Family

How I Almost Became A Celebrity Stalker

Homework


November:

Twice Blessed On My Birthday

Double Trouble

Hate to Interrupt You, But...

Results, Not Typical


December:

All I Want For Christmas

I'd Like The Non Smoking Section, Please

Christmas in Candyland


Wishing you & your families a very HAPPY NEW YEAR!!!! Here's to hoping that 2010 brings us many more happy moments and a lot less medical issues. Yes, I am dreaming.





Did I list your favorite Austin moment from 2009?


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Christmas in Candyland

Happy Day After Christmas. Uncharacteristically, Austin has decided to sleep in this morning so I am going to take advantage of the time to share our Christmas with you.

We spent Christmas Eve with family at my Grandpa's house. It was a FULL house and we had a great time hanging out, just like the good old days.

The highlight of the evening was the Gingerbread house extravaganza. Behold.








Austin absolutely LOVED it. Isn't his baking apron adorable?








He piled on so much candy it was sliding down the roof! After it was all said and done, his house weighed at least twice as much as everyone else's. I was amazed that he got so into it. He was concentrating on every single piece, whereas Elijah was plucking candies of his house and into his mouth faster than his mom could stop him. It was quite a humorous scene.





While the 'craft' was intended for the kids, even the adults got in on it. Thank you, Auntie Becky for bringing some fun, we had a blast!


The finished product!





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'Twas The Night Before Christmas...

So here is this year's attempt to get Austin in his stocking . Actually, getting him in the stocking was the EASY part. Getting him to stay still for a non blurry picture, now that was near impossible!

It went something like this:





















Happy Christmas to all, and to all a good-night.


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The Reason For The Season

This scene reminds me of one of my favorite holiday songs, The Little Drummer Boy.

Come they told me, pa rum pum pum pum
A new born King to see, pa rum pum pum pum
Our finest gifts we bring, pa rum pum pum pum
To lay before the King, pa rum pum pum pum,
rum pum pum pum, rum pum pum pum,

So to honor Him, pa rum pum pum pum,
When we come.

Little Baby, pa rum pum pum pum
I am a poor boy too, pa rum pum pum pum
I have no gift to bring, pa rum pum pum pum
That's fit to give the King, pa rum pum pum pum,
rum pum pum pum, rum pum pum pum,

Shall I play for you, pa rum pum pum pum,
On my drum?

Mary nodded, pa rum pum pum pum
The ox and lamb kept time, pa rum pum pum pum
I played my drum for Him, pa rum pum pum pum
I played my best for Him, pa rum pum pum pum,
rum pum pum pum, rum pum pum pum,

Then He smiled at me, pa rum pum pum pum
Me and my drum.


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Feliz Navidad - Our Christmas Traditions

Christmas season is in full swing around here and not a moment too soon. Christmas around here usually means space near the tree can no longer be found. I know you think I am kidding, but I'm not.



And this is only a fraction of it!! Which is really weird, because this year the adults didn't even buy any gifts for each other; we collectively decided to adopt two local families and buy for them instead, which was A LOT of fun. So where the heck did all this other stuff come from?

In a word: GRANDMA.

With 25 grandchildren & 1 great grandchild I suppose it was inevitable. We expect to see the tree again on December 26th.

In the meantime, we will stuff ourselves with some traditional Mexican fare: Homemade Tamales & Capirotada. If you have never tried it, go find some! If you've never heard of it, go check it out, I'll wait here. Although Capirotada is traditionally served during Lent, we make it for Christmas too. There is something about holidays and family recipes that just makes it a requirement.



I would share my Grandma Mikaela's super delicious recipe, but then I would be voted out of the family. So trust me on this, it is quite yummy.

This past weekend was our Tamale Extravaganza, in which we attempted to host a party AND make a bazillion tamales. Even the kitchen was decorated in a Tamale Theme, Grandma strikes again!

Sixty pounds of masa later we had Red Chile & Pork, Red Chile & Turkey and Green Chile & Cheese tamales out the wazoo! I wouldn't call the party a tradition per se. Unless you count that traditionally we only do this once every 3 years or so; just long enough for us to forget how much work it is!! When we get nostalgic we make tamales from scratch. Next year we will go back to my brother standing in line on a cold December morning to purchase them from Liliana's like every one else. Now that is a tradition I can live with.

Do you have any family or cultural holiday traditions at your house?


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News Flash: I Am Not Super Mom. Are You?

Due to ongoing computer issues and more importantly Austin-related medical issues, I have not been online much for a few weeks. Just when it seemed that the computer issues were resolving, the medical issues started. Ah, such is my life.

But I have been online enough this past week to know that something not so nice has been happening over in Twitterland and in the Blogosphere. It all started on Monday night when Shellie Ross tweeted that she needed prayers for her sweet son Bryson, he had fallen in the pool. After the paramedics arrived she tweeted from her mobile phone to ask for prayers. We prayed and a short time later learned that indeed Bryson, 2, had earned his Angel wings. Unleash the firestorm!

While many in the blogging community rallied to support her family, others bashed her and said unmentionable things about her as a Mother. Within hours of losing her son. Unthinkable. To be honest I have not read the negative blog posts because, quite frankly I have no time in my life for that. It saddens my heart. Not only must Bryson's family deal with his tragic death, but now also with media requests for interviews. Come on, let them grieve. Yes, Shellie is a well known blogger, but she is first and foremost a mom with a broken heart. Let her be.

Speaking for myself, there is something special that happens when you are a part of an online community, be it a mom blogger community such as MomDot, a special needs parenting forum, or even Facebook. These people who live across the globe and might otherwise be "strangers" have become my friends, these are the people who understand my situation and live it themselves, these are the people I look to for advice and support.

What happened to Shellie & Bryson, in a split second, could have happened to any one of us. Thank God it wasn't me this time, because Lord knows it so easily could have been. A few months ago on a morning without any nursing care I walked out of the room to get a cup of coffee and came back to find Austin had removed his Trach. He could have died. Another fine summer day came to a halt when Austin, clearly testing my Super Powers, face planted over an armchair in the living room. In both instances I was just seconds away and BOOM!

It only takes a second for disaster and how many of us have been there? I know I have had so many moments where for some unknown reason I turned just in the nick of time to reach out and save Austin from falling or hurting himself. Bad things happen and often we are not lucky enough to say "Whew, I'm so glad I was there, did you see that?"

So, no I don't judge Shellie's choices. I grieve along side these women, for a mother who lost sight of her son for a second and lost him forever. That's what friends do.


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Shiny Things

You know how some things seem like a good idea in theory, but not so much in practice...




















...that would be my idea about having Austin help decorate the Christmas Tree this year.


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I'd Like The Non-Smoking Section, Please

If we did not have Nursing care I am not sure what I would write about folks.  So far this year we have dealt with The Nurse who I wanted to duked it out with while Austin was in the hospital on New Years Eve, The Pointy Nurse, The Choking Nurse , the Nurse who said Austin was too violent (trust me that was a doozy), and now we have the newbie Nurse who asked ME a very dumb question. Yes, that was a long sentence, but it has been an equally long year.

"I'm not sure how to ask this, but...well...I'm a smoker. Can I smoke after the baby goes to bed?"

I had a two-word answer. "Absolutely NOT!" Then I added a few hundred more words and went into a 10-minute speech on the evils of Smoking. I guess that'll teach her.





I know most of you will be shocked that I did not toss her out, but I explained "The Rules". She agreed to them, so we are good for now.

The Rules:

• No Smoking whatsoever on the premises, ie: There will be No "breaks" for Smoking, No "let me just Smoke outside" and No "let me just crack open this window and stick my arm out".
  
• Don't wear any clothing to work that has been smoked in and not washed ie: Don't smoke in the car on the way over and expect to keep your shift.
  
• If she cannot stop herself from Smoking for 8 hours, three days a week then this is not the job for her. She can work on destroying her OWN lungs on her own time.
  

So all of this discussion this begs the question: When she read Austin's medical chart what part of Chronic Lung Disease did she not understand? Or do you think maybe she saw our snazzy oxygen cart and wanted one of her own in a few years? Perhaps the idea of being hooked up to Oxygen while you sleep is enticing to her who knows?

Truthfully I have never been really fond of being in the presence of cigarette smoke or Smokers even before Austin came along. But now it is a non issue. Smoking in his presence is OUT.OF.THE.QUESTION. There are plenty of statistics on the health effects of second hand smoke on children and as you can imagine smoking near a child with a Trach (direct access to the lungs) and chronic lung disease does not mix, to put it mildly.

I don't know about you, but I'd like to to NOT add any other Specialists or medical issues like asthma, heart disease or lung cancer to my 2 year olds already packed medical resume.

Do you allow smoking around your children?


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Photo by Lucas Janin @ Flikr

All I Want For Christmas...

Two weeks ago, I got a lovely letter from our DME (Durable Medical Equipment) rental company stating that I now "own" a piece of Austin's equipment. This is considered both good and bad; Good, because hey who doesn't like to own shiny new things, right? Bad, because now I am responsible for all maintenance of, said machine.

I had one problem, I could not figure out WHICH piece of equipment the DME letter was referring to. Go figure. We already own the Pulse Ox machine, the Compressor (Humidifier), the Zevex feeding pump, the Suction Machines (2), the Nebulizer and the lovely IV pole. So, yeah, I was stumped.

The letter stated: 'Portable - Oxygen Gas'. So I asked my go-to-Lung-gal, Sarah if she thought they meant the Oxygen Concentrator, since that is the only piece of equipment I do not currently own. We joked about how we would hardly call it "portable" but, whatever. I'll take it. It would not be a bad thing to own considering Austin's chronic lung disease, and all. Although I was kinda sweating how I would swing maintence on THAT since it's not like just anyone can fix your Oxygen Concentrator, kwim?

So I put the letter on the back burner and made a mental note to call and ask the DME if we did indeed own the O2 concentrator. Usually when you "purchase" a piece of equipment they pick up the rental and deliver a shiny NEW one. I was all excited, then I forgot to call. Until yesterday.

The equipment person placed me on hold and verified that indeed we (or rather Austin's medical insurance) had paid enough money this past year to "purchase" the "Portable - Oxygen Gas". But, no it was not "code" for a new, shiny, blue Oxygen concentrator, it was equipment lingo for this doohickey:





Yes, that's right it is the cart that pulls the O2 tanks. Gee, thanks! I am sure Austin will be thrilled to find it under the tree this year.


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Brrrrrrrrr

Hey it hit 60 degrees here in SoCal, that calls for winter wear!!!










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