Thankful - We Are Down, But Not Out!

Thanks so much for your patience. My computer is still disassembled and currently miles away from my house. Something went very wrong and it is taking a while to diagnose and fix the issue. With any luck I will be operational again sometime this week.

In the meantime, enjoy these pictures from our visit to Santa Teresita's Fantasia Family Fun festival last weekend.














Yeah its another attempt at getting a good Christmas shot - we need to get in all the practice we can! Austin refused to sit with the nuns, but he was all smiles (& jumps) to have his own photo shoot again. I don't think Santa is going to have any better luck than the sweet nuns.


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Must Have Stocking Stuffers

Last week my mom showed you her some of her favorite pics from Christmas 2008, well now it's my turn.

Here is what I like to call "Vintage Austin", circa all the way back to 2007. Now THIS is a Christmas picture worth ooh's & aah's. Go ahead, I'll wait.





Yes, Silly Mommy thought putting me in my stocking was cute - two years in a row! Har, har, I'd like to see her try THAT this year.



"Hey buddy, here's a candy cane. Now get lost, will ya!"


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Gettin' Crafty with Twitter

I often see different sites with kid crafts and think to myself 'Oh that would be nice -- or a complete disaster to try with Austin'. Today I was draggin' around, coffee in hand, thinking I need to get ready to go to the craft store and buy some Turkey type craft stuff because Austin needs to make something Thanksgiving-y or I have failed as a mother.

Then I was checking Twitter and I saw a post about Thanksgiving baby signs from @ElizabethSigns and promptly taught Austin the sign for Turkey. But we have no Turkey...ugh. Now I really need to get up and go get some Turkey stuff to make this a complete lesson.

Well, lo and behold then I saw a tweet from my kid craft guru @NoFlashCards. This woman can do everything!! She featured a poultry craft with some crumpled leaves. {Lightbulb!} Hey, I have leaves...lots & lots of leaves. I can do this and I don't even need to get out of my PJs! (Hey it was only 8am.) Then, DOH! I recalled that I have TONS of scrapbook supplies gathering dust.

So I took a paper plate, some old scrapbook paper and a handful of leaves which had fallen right into the veranda. Seriously this could not have gone better, I didn't even have to put on my shoes. Niice.





I found some tacky glue, cut "feathers" and set Austin to work on his first Turkey. The leaves did not want to stick on with my tacky glue and...well I did not want it to get too messy or complex for a 2 yo with short attention span. So I cheated and used glue dots to hold one massive leaf for the Turkey body. Austin lightly colored a face (we need new crayons)...and Voila!



Gobble! Gobble!


The artist did not want to be photographed in his PJs. Excuse the lousy pics, still without my computer and my cell phone lacks good picture quality.


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Results Not Typical

Does the difference between big promises and reality lie in the messenger or the recipient?

I recently attended a very important medical appointment for Austin with my mother.  We came away with very different perceptions of what occurred. It is proof enough to me that indeed, you hear what you want to hear. It would seem that one, or both, of us had selective hearing that day.

In my opinion, the doctor was a bit overzealous and made some pretty big promises about certain medical advancements and how it could benefit me, Austin and others in my family. The things he mentioned were staggering. While it sounded fan-freakin-tastic I was still skeptical because I had done enough research on the subject to know he was giving us the best case scenario pep talk. I listened, but in the back of my head I was making mental calculations. I understood the reality of how much work was to be done in order for ME to benefit from what he mentioned, it sounded promising. Too promising.

On the other hand, my mother was ecstatic about the news. She took his word at face value and started spreading the word about this wonderful new medical discovery. And it is a wonderful thing don't get me wrong, any medical advancement that could help us is GREAT! But I almost felt like she did not hear the disclaimer. There was a pretty big IF in there. In fact it sounded to me like the whole thing was based on an IF.

What sealed the deal for me was when the doctor finished his whole "medical advancement rah-rah-rah" speech, the research coordinator came in and said something to the effect of, 'Dr.So&So sometimes tends to over promise results. Please understand that you may not get those results.'

There it was, the medical fine print.

Whether or not the outcome is as big as promised, the funny thing to me was how differently we chose to view the information. Here we are, both mothers of children with a very rare medical diagnosis, the SAME diagnosis; yet on hearing the same news we view the outcome so differently. If nothing else it certainly highlights our differences.

My mother is an eternal optimist, she has 25 years on me in terms of dealing with Doctors and treatment plans, yet she still believes them. I find that staggering! I, as you may have guessed by now, am more of a pessimist realist.

In the past two years, I have heard more than my share of bad news. One thing I know for sure is that I prefer the direct, honest I "just-don't-know-how-long-this-will-take" approach. I will accept a guesstimate, because let's face it that is mostly what I get. But I don't want to hear the "in-a-perfect-world" answer.

That answer does not apply here, it is reserved for the miracle babies who get "cured". In all honesty, if we lived in a perfect world I would not be sitting in this office for a 3-hour consultation I would be out among the rest of you living my fine, splendid life far, far away from doctors and hospitals, thankyouverymuch. So no I don't want the prettied-up version.

No matter the outcome of these latest tests, I have already received my miracle.

When it comes to getting medical news are you more of a "realist" or an "optimist"?


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RSV Awareness

We have this sign on our stroller:



When out and about everywhere from Disneyland to our doctor's offices, I get asked where I got it from. Our sign came in the mail from the makers of Synagis, but you can order them here. We have 2 signs because Austin has had two seasons of respiratory syncytial virus (RSV) shots. Today he began his third seasonal round of shots, much to his dismay, so it is very likely that a third sign will arrive at our house soon.

Often with the explanation of the sign comes the longer explanation of RSV and its risks. Chances are if your child is not in a high-risk category you have never heard of Synagis or very much about RSV at all.

As the parent of a child with Chronic Lung Disease my social life is dictated by taking extra precautions during RSV season. I take it very seriously, I even have the County website for RSV cases bookmarked on my browser. The site is used to update healthcare professionals in our area of Respiratory illness cases county wide. It covers the seasonal flu as well, but is dominated during RSV season by RSV cases. This season it also includes H1N1 cases reported in our county. Noticeably, those numbers are increasing at a much higher rate, but it is still early in RSV season. Usually there is a peak of RSV cases closer to January where we live.

RSV season runs from October to April depending on where you live in the US. RSV season is serious business. RSV can affect ANY child, however special precaution is taken to protect preemies born prior to 35 weeks as their lungs are very fragile. Austin was a 36 weeker, but due to his Trach and Chronic Lung Disease he is also a candidate for RSV shots. When he was born, in November, his Pediatrician said he did not need the RSV shots. But 3 months and one Trach surgery later, his Pulmonologist said he was an automatic candidate, but by then there were only 2 months of RSV season left.

A home health care nurse sent by a Pharmacy shows up at our house every month from November to April and gives him his Synagis injection. The dosage is based on weight, 15mg/kg of Synagis (Palivizumab) so it changes monthly.


The following information is provided by the makers of Synagis.

RSV is common, seasonal and easily spread virus that infects nearly ALL children by their 2nd birthday. While most children get mild symptoms some at-risk babies can become very ill and hospitalized.

Who is at Risk:

• Preemies born prior to 35 weeks.
• Babies with Heart Disease under age 2.
• Babies with Chronic Lung Disease under age 2.

Symptoms of Severe RSV:

• Persistent coughing
• Wheezing (a whistling sound when breathing)
• Rapid breathing
• Gasping for breath
• Bluish color at fingernails or mouth
• Rectal fever greater than 100.4 F

Important Things You Should Know:

• Synagis is NOT a vaccine, it is a medication given monthly. Each shot carries RSV specific antibodies that preemies may not have gotten in utero due to premature birth. It is the only FDA approved medication to help protect against RSV.

• Synagis shots may be recommended through your child's Second year. Each Synagis shot is scheduled 28-30 days apart. If your child begins a Synagis regimen it is very important to continue with each shot throughout RSV season, each shot only offers RSV protection for up to 30 days.

• In its severe form RSV can cause up to 125,000 babies to be hospitalized annually.

• RSV virus is spread by sneezing, coughing, and handshaking. It is very persistent and can live on surfaces for up to 6 hours.

Additional Possible Risk Factors:

• Other toddlers or children in the home or daycare.
• Family history of Asthma.
• Exposure to Tobacco smoke or tother air pollutants (Smoke is always bad for lungs.)
• Multiple births - Multiples are often premature or low birth weight.
• Low birth weight - under 5.5 lbs
• Crowding - four or more members living in a household.
• Age: Less than 3 months of age at the onset of RSV season or born during RSV season.

Safety tips for RSV Season:

• Wash your hands before touching a baby, ask others to do so as well.
• Keep babies away from crowds and young children.
• Keep babies away from those who are ill with colds, it may be undiagnosed RSV.
• Wash baby toys, clothing & bedding often.
• Keep babies away from tobacco smoke. (Smoke is always bad for lungs.)

If you think your child has or is at high-risk for RSV please consult your healthcare provider.


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Being A Patient Advocate - Mom Knows Best

Have you ever wondered what your child's medical chart says about YOU?

Does it drive you crazy when the doctor, nurses and therapists call you "Mom", instead of by your name? (or is that just me?)

I have quite a "reputation" among Austin's health care providers. Shocking! I know.

I am not sure how it all came about, if they each discovered this on their own or if there is a note in his medical chart somewhere, but I am known to be, and I quote, "on the ball". Over the past two years I have heard this said about me numerous times.

But that is a good thing, right? When you have a medically fragile child you need to be "on the ball", right? I am sure there are a LOT worse things than that. In fact, I know there are.

In some instances I am pretty sure "on the ball" = "difficult" to them. I prefer to think that I am well-informed, well-read and often just a teensy bit more knowledgeable on the subject at hand, which happens to be my child. They may know kidneys, blood pressure and how a muscle should work, but no one knows your child better than good ol' "Mom".

Looking back, my reputation may have started as early as Day 3 of Austin's life. I recall having an ever so...erm, polite exchange with a Pediatrician about an immunization. I declined it and she felt it was her job to tell me what a bad and uniformed parent I was. I knew my Patients Rights,and I exercised them. End of story. She is not the only health care professional I have fired, I just cut my teeth on her. Is that "on the ball" or difficult?

I remember when she left my hospital room, my mom was shocked 'Did you just argue with the doctor?' Yup! I sure did. If you try to brush me off, belittle my concerns, treat my child badly, provide negligent care or just plain ignore him. Guess what, then I can become difficult. Otherwise, yup you can call me "on the ball". Secretly, I kinda like it.

So what makes me so "on the ball" you ask? Just taking a guess here, but it may be one or more of several things:

• I call to follow-up on tests
• I ask for a copies of reports for my records
• I ask questions about possible alternative treatments
• I offer suggestions {gasp!}

Basically, I just look out for Austin's medical interests and I try not to get blinded by ego; mine or theirs. When it comes to Austin's medical treatment I intend to be seen and heard and whenever possible I like to participate in the discussion. I am his patient advocate

Obviously if I had all the medical answers I wouldn't need them. Trying to keep up to date on relevant studies or reviewing tests doesn't give me all the answers, not even close. I realize I need their expertise and experience to help guide the best course of treatment. I am constantly reminding myself, "No one can whistle a symphony. It takes a whole orchestra to play it." {H.E. Luccock}

Being your child's advocate does not mean being combative, not at all. Parents should be able to work cooperatively with a medical team. I would not suggest going into an appointment waiting to pounce on a doctor or disregard them, merely be prepared with your own questions. Unfortunately, it appears that some health care professionals are not used to a parent working that way.

I wonder how many other parents are considered difficult, erm...I mean, "on the ball". Have you clashed with a doctor on your child's care?



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Wordless - Anatomy Of A Christmas Card

Since I still have no access to my current photos or my computer (a moment of silence.)  I have decided to do a flashback post. This week last year I was trying my darndest to get a cute shot of Austin for our 2008 Christmas card.




















Guess which one made the cut?



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My Computer Has A Boo-Boo

Just a quick note to let you know, I have not fallen off the face of the Earth. My computer has a major boo-boo and is OUT OF ORDER! So until I can get it fully repaired I will be scare.




But on the bright side: ALL my laundry is folded and put away, Austin's toys are sanitized & organized, and I have caught up on this season's episodes of Cake Boss.



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Wordless - What's For Dinner?

Mashed Potatoes, of course!


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I May Have Created A Monster

Austin LOVES to watch his videos. At least I know he appreciates all my hard work, but it is getting a little bit out of control around here. Just about every time he walks by the computer he signs that he wants to see "Mickey Mouse".

He grabs the headphones and waits right.here.next.to.me or he walks around holding my wireless mouse hostage until I play his latest birthday video at least 5 times in a row. He really doesn't care for the last song & pictures, as soon as there are on he removes the headphones and signs "more" or "again." Meaning, let's get back to the part where I can see Mickey Mouse lady.





One day last week he sat at my computer and watched every.single.one. of his videos very intently. That is 40+ minutes of back-to-back Austin.

I have stooped to saying some very un-parent-of-the-year-like things, such as "Goodnight, computer" and switching off the monitor or "the headphones are broken, there is no music." Sad, I know...I know. I didn't say I was proud of it. I am happy that he loves them, but I want my computer back now, please!


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Hate To Interrupt You, But....

THE BABY IS CHOKING!!!!!!


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I really did not want to write about this because I don't want come off negative to those in the Nursing profession (Love you Cristin!). But good God, why do I keep getting LEMONS?? I don't want to make more lemonade. I just want to be able to work or sleep and know that my son is in capable hands. Is that too much to ask?




Apparently so.

Last Friday & Saturday we had a relatively new nurse, she has been here several times and every time I kept wanting to pull my hair out! But when you are desperate for some sleep you cave and you give the benefit of the doubt one too many times. Or I at least I do. Did.


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Let me start with Friday. We needed to leave for the hospital by 9AM. At 8:58AM I had everything in the car except for Austin. Yes, I packed it all...not the nurse. The only thing she needed to get to the car was Austin. BIG MISTAKE! She tells Austin "Hurry we need to leave," so he RUNS...do you see where this is going? He RUNS with wild abandon full speed, stumbles into the kitchen and face plants on the HARD.CERAMIC.TILE! Okay, this stuff happens. It has happened on my watch so I know he is 2 and he is going to fall sometimes. BUT at this point I am pissed because he is wailing and she is standing around dumbfounded. Grab some ice, grab the baby...do something!!

I momentarily considered calling and canceling the appointment because well his face was you know, throbbing and such. But we moved on. After I calmed him down I handed her a Nemo ice pack and told her to apply that to his forehead in the general area of the purpleness (yeah, that's my new word.) Two minutes later she whines, "he doesn't want it on." Too bad! He needs it on for the swelling to go down...didn't they teach this in nursing school?


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So now we are running late and I am flying down the HOV lane on the 10 freeway doing 70MPH. Which really is not THAT fast, but faster than the regular lanes. Suddenly I hear a cough/hack/sneeze from the back seat that sounded - excuse me - goobery. KWIM? Then silence.

This bothered me because that kind of noise coming from a kid with a Trach generally requires immediate action. Nothing. Then the noise comes again, more cough/hack/sneeze. So I look in the rear view mirror and still no action from the backseat where the nurse is calmly sitting right next to Austin.

So now I say, "um, I think he needs to be suctioned". Just then I look in the rear view mirror and see his face turning red, he is gasping & now she is fumbling with the suction machine. It's on but I don't hear any suctioning.

So now I am louder, "he is choking, he is choking..." She yells back, "the suction catheter came undone." By then he is gagging & retching. I am still driving in the HOV lane. So I look in the mirror and she he still fiddling with the machine and I say "unbuckle yourself and help him, he is CHOKING!!!!" Now I figure she is a complete moron, so I do the unthinkable.

I pull over into the area next the the carpool lane and STOP.THERE. put my flashers on I jump out of my seat and turn around grab the d@mn catheter and suction him myself. He is still retching. I yell for a 60cc syringe. OMG. She calmly opens it I grab it out of her hand and attach it to his G-tube. He stops gagging. I grab some tissues and hand them to her to clean off his face. Then she says, "well you know the car was moving and I'm not used to that I couldn't get the catheter in."

O.M.G.

So needless to say I wanted to throttle her and secretly wished a police car would drive by so he could take her away. Far, far away.


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Against my better judgment she came back on Saturday. I woke suddenly @ 6:20AM. I saw the monitor going so I knew Austin was still asleep but I did not hear the nebulizer machine humming so I knew he was not getting his breathing treatment. I walked out in to the living room and asked her "did Austin get his water & meds?" She looked at me like I was speaking Greek. So I stormed back to the room and prepared the meds and water. By the time she caught on I was already mid stream to MAD. I hand her the syringe and go to the bathroom to privately scream! I walk back in and the light is on...why is the light on? He is ASLEEP!! So I turn off the light and say "um, we have a schedule printed out because certain meds need to be given at a certain time because of drug interactions. They need to be ON TIME." So she innocently looks at me and says, 'so then you wanted me to wake him up?'

No, did I say wake him up? No, I said, there is way to do it without waking him up. Everyone else can manage that, but guess what you turned on the light, Brainiac so yeah now he is awake!

And so begins my day.


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'He doesn't want to take a nap, he wants to watch his DVD.' So I gave her my standard response, "Well I'm the Mom and I say it is nap time, so there." Yes, I really did say that. He is 2, of course he wants to watch Nemo, but guess what it is nap time and he really is tired he just doesn't know it yet. ARGH!

Now because of the whole early AM medication fiasco the schedule was 30 minutes behind. My direct instructions to her at nap time (11:00 AM) were, "hook up his feeding to him so you don't need to fumble in the dark later or turn on the light. Then at 11:30 you turn it on."

So why did I look at the clock at 12PM and think to myself...hey I don't recall her walking back in there. So I go ask. I find her mid bite into her sandwich. "Did you turn on his feeding at 11 or 11:30?", I ask.

SHOCK! It registers.

She is eating her lunch and looks up and says, 'Oh, I forgot.' You forgot...YOU FORGOT! You are hungry and eating YOUR lunch, but you forgot to feed the baby who can't eat. Seriously. You forgot? You stupid, stupid beast!

Now I am completely disgusted.


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Then she has the freakin' audacity to say to me, 'you know I need to leave exactly at 2pm today.' Oh don't worry sister you will be leaving at 2pm and not one moment sooner. Oh trust me I wanted to toss her out on her ***, but I had things I NEEDED to do, like um, shower and laundry. I gave her a list of "Austin" chores to keep her busy. So then at 1:20 she brings me her time sheet to sign. I handed it back and told her bring it back to me at 2PM to sign. You think by then she would have figured that I'd be a bit, um I dunno "testy" given her behavior. No, not so much.


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Austin woke up from his nap at 1:47PM. Perfect timing for a diaper change and some water. Do you know she actually refused to do it saying 'I need to leave at 2PM.' The clock read 1:53. So I said you have 7 more minutes that is enough time. 'No my watch says it's 2PM.' I don't care what your watch says, THAT clock says 1:53 so that is that.

Right on cue after his diaper change as he is laying on the changing table Austin begins to retch and vomit, I try to sit him up and she pushes him back down. WTF? "He needs to sit up so he can vomit, DO NOT lay him back down!" Isn't this written somewhere in Nursing 101?

So at 2:00PM on the dot she left. FOREVER!

Let me add that we do have some WONDERFUL nurses here, but every once in a while, a true LEMON! Please tell me I am not the only one with Nursing woes.


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A Thousand Words Thursday - You're My Hero!

We recently had some photos done at a local park with a Littlest Heroes Project photographer, Marjorie Williams. I think she did a fabulous job capturing the essence of Austin, but then again I may be biased. ;)




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Little Music Lovers CD Review

Austin is a HUGE music fan. Despite a severe hearing impairment he loves dancing along to music and the louder the better (obviously)! The boy loves music, always has. He especially loves Classical music.

If Donny & Marie are considered 'a little bit Country & a little bit Rock & Roll,' then Austin is a LOT Classical. There are worse things in life than being a Classical music junkie, right? So I'm not too worried about this particular obsession.

Recently I was contacted to see if I would like to review a new CD series by Decca called Little Music Lovers. I was expecting a Children's sing along type CD, so imagine my delight when the Sampler CD arrived and it contained various "famous works by renowned composers such as Bach, Beethoven and Mozart along with well-known lullabies that will accompany little ones through all of their daily activities including play time, story time and of course, bed time."

During a recent play date I busted out the Smart Music Series Sampler to see how Austin & Elijah liked it. Apparently, they agree on one thing: Classical music. And as you know music calms the savage beast, so of course Mom liked it too!

The Little Music Lovers Smart Music series includes:


Little Music Lovers: Beethoven - Smart Music for Story Time



Little Music Lovers: Mozart - Smart Music for Play Time


Little Music Lovers: Bach - Smart Music for Activity Time


Little Music Lovers: Lullabies - Smart Music for Bed Time

As you can imagine, Austin is in Concerto heaven! I think Bach is his favorite so far, Brandenburg Concerto No.4 in G is the perfect soundtrack for him running crazy through the house.

I said he liked Classical music, I didn't say he wasn't a typical 2 year old!

Just in time for holiday shopping, Little Music Lovers CDs would make a great stocking stuffer (hint, hint) and are available for $6.98 at Amazon.com.

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DISCLOSURE: I received a sample of a product to review and keep. I personally have not received any payment to post this review.

Wordless - Day of The Dead

As promised, here is the completed project for our Day of The Dead celebration.



Personally, I like her Pedi! But that's just me.


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Double Trouble

If you know Austin you know he doesn't get out much, especially not during flu season. So play dates at the park or Gymboree are pretty much out of the question.  Thank GOD for his older cousins wanting to come over and play with him.

Occasionally they get sick too and that is a drag, but mostly they just have some good old fashion fun together.

The exception: Elijah.


AUSTIN! How could you not love this kid???





It's a pity too, because they are closest in age. His next older cousin is 5 and a girl. So you can imagine my excitement when his cousin Eli came along nine months after Austin. I thought they would be instant playmates.  Not so much! For some unexplainable reason, Austin flips out within 2 feet of sweet Eli.


Last week Elijah came over to play one night before bedtime. And there was a breakthrough, for the FIRST time they actually played together.















Now that they have learned to cooperate, I think we will be in for some trouble with these two in no time at all!


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