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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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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Ready For School?

When it's homework time at our house Austin gets into the act as well.





While my niece does her Kindergarten homework Austin also does some reading and coloring. Anything to hang with the "big kids." The stack on the left is "unread" books. The stack on the right is "finished" books. In between books he colors for a minute or two. LOL.



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The Breakfast Club - Part II

I am getting emails and phone calls for this update. So you know what that means? I better see some comment love folks. Yeah, you know who you are. ;)

We had our follow-up appointment with the Breakfast Club this past week. It was a 2 1/2 hour deal that had our day starting by leaving the house at 6:30 AM.  Trust me when I tell you I was making some coffee as soon as my feet hit the floor at 5:15AM.

It might not have been so bad, except that I had totally forgotten that I had also booked a Pulmonary appointment for later that afternoon. At another hospital. In another county. So it was destined to be a LONG day.

And to top it off Austin broke his $4K BAHA (Hearing Aid) the previous afternoon. So, being the SuperMom that I am, I sandwiched a trip to the Clinic to drop that off for repair in between the other two appointments. Why? Because I am a glutton for punishment. Why else? It takes 2 weeks for it to be sent out and fixed so obviously the sooner we get on that the better. {But I'll get to that visit in another post, the current working title is: The Great BAHA Debacle, if that gives you any clue as to how that will pan out.}

But back to The Breakfast Club.

As far as appointments go I cannot remember a better one. Not as quick and easy as Orthotics, but it ran very smoothly. If you leave out the 'we-got-there-a-tad-bit-early-and-the-waiting-room-was-locked' so we had to go find the cafeteria to eat first part. Otherwise, it ran smooth.

We met with 8 people. Hi, I'm So&So, shake hands, Hi I'm So&So, shake hands...rinse, lather, repeat. For the life of me I only remember 3 names. The main players were the GI doctor, the Nurse Practitioner and the Dietitian. I remember them. Everyone else is a blur of faces and names.

First they put us in a room with one of those two-way mirror thingamajigs, or is it a one-way mirror/window? Anyway, you get the picture. They placed us, Austin, his nurse and I, in the room with a high chair. They instructed me to feed him as I would at home and they watched from the other room and listened in on us using a baby monitor. So yeah it was kind of weird being judged on your skills right then and there. It was a one shot deal. If Austin threw a hissy fit or decided to throw up it was all being dictated in their notes.

Austin did great. He did gag and retch on some Spaghetti, which is sort of rare, but if he is gonna do it, better for it to be in front of people who can help. Er, yes I served Spaghetti. Stop shaking your head, they asked for me to bring his favorite and least favorite foods. HA! I had to stop at five least favorites, because let's face it he doesn't eat A LOT of things.

So after a few minutes of torture them watching, the OT and SLP joined us in the room. One asked me questions and the other one tried to feed Austin. They tag teamed comments for a few minutes.  Then it was time for the Social Worker and Psychologist to join us. Same routine, they volleyed questions at me and asked about his habits etc, nothing too extreme. Finally, the Nurse Practitioner and the Registered Dietitian came in.



This is where everything just sort of fell into place and we started to really get into the nitty-gritty. The numbers. If you've ever dealt with a dietitian, you know they are all about numbers. Weight, calories, vitamins, etc.  Much to my surprise I really, really liked the dietitian. Normally I find myself at odds with our regular dietitian. It's not that she isn't professional or efficient, but we tend to go back and forth A LOT and eventually try to meet somewhere in the middle.  But this lady was different, maybe because she agreed with me...but in any case it was a different kind of conversation altogether.

Then we had a pow-wow, everyone came back into the room together.

{Need to switch gears to give you a visual for a moment.}

If you have ever seen the beginning sequence of Toy Story 2 you will totally get this. The spaceship lands and Buzz starts to narrate into his radio on his forearm as aliens descend upon him with laser beams. As eight women stood on one side of the room, Austin hopped off his chair and immediately went into his Buzz Lightyear imitation, muttering into his arm as he surveyed the situation. It was CLASSIC!! One of those moments I wish I had a video camera.

Ok, maybe you had to be there.

The Wrap-up:

We have a recommendation to change his current diet and water intake.
We have a prescription for a medication that acts as an appetite stimulant.
We have a few suggestions on how to change up our current feeding regiment and schedule.

Everyone is very optimistic that Austin will do well with these changes AND may not need to go into their inpatient program at all. I am running all the recommendations by his current doctors and therapists to get everyone on the same page. Then we will follow up with The Breakfast Club to see how he is doing in a few months.

Why the wait?

A few reasons, 1.) He may be having surgery in a few months so no need to go gung-ho into a program that may stall with a surgical recovery. and 2.) more importantly, our Insurance will most likely NOT approve this intensive program.

So why meet with them at all?

Simple. Ideas.  As I mentioned before it is always a good idea to have another set of eyes on a certain situation.  Austin is really coming along with his basic feeding skills, what he lacks is HUNGER.  This new plan will hopefully create that sensation.

The details:

Their program offers a 3 week intensive inpatient stay.
Their approach is to make feeding "fun".
Their goal is to have him 70% OFF tube feeding by the end of three weeks.
Their success rate is 85%.

All music to my ears.

Their cost is $80,000 and it is not covered by our Insurance.

Not music to my ears. So until that last part changes we will continue to see them on an outpatient basis along with out regular bevy of doctors and therapists.

To be continued.


Thanks for peeking,




Photo credit: Petar Ishmeriev

The Breakfast Club - Part I

Recently I looked into getting Austin into an intensive feeding therapy program. It all started a few weeks ago when I casually asked his SLP her thoughts on getting him into an inpatient program. She thought it was a great idea and encouraged me to check out a few programs in California.

I contacted a local hospital to get information on their program by sending an email inquiry and then promptly forgot about it. Two weeks later, on a Friday afternoon, they contacted me out of the blue to schedule an appointment. A last minute cancellation made it possible for Austin to be seen the following Monday. On the plus side, the short noticed allowed me only a few days to stress out about it. Because you know that's what I do.

Our appointment was a bit longer than expected, but overall it was encouraging. I felt right at home with people who "get it". Not saying that our current doctors and therapists doesn't get it, but they are not actually a TEAM. They are several people, in several different departments doing their job effectively, but not working toward a goal TOGETHER.

What I like about the feeding program being at a different hospital is that Austin has a new set of eyes on him. Actually six sets! Anyone who has ever sought a second opinion will understand how crucial another set of eyes on a medical problem can be. Once I was able to provided them recent reports and an updated medical resume it was smooth sailing to the next step.



Part of the reason the appointment took so long is because we discussed A LOT of things. Among them 1. MY reason for wanting him to participate in the program, 2. HIS desire to eat, 3. the reality of upcoming surgeries that could stall any feeding progress, and 4. how quickly the tube would actually be GONE.

While I certainly don't feel the need to explain my position on intensive feeding therapy programs to anyone not directly related to the situation, I will discuss points #1 & 2, in a nutshell. Simply because I know others may be considering whether an intensive feeding therapy program is the right fit for them. For obvious reasons I cannot go into every IF this, THEN that scenario, as every child is different. This is MY child so I feel qualified to discuss intensive feeding therapy as it relates to him.

My position is this: My child enjoys eating socially, even eating on cue during his therapy appointments. He moves food to his mouth using a fork, a spoon, or his fingers. He has never been "force fed" or left to sit in his chair until all his food his was gone. He has been medically cleared for eating and drinking safely. He has tried and is willing to try to eat sweet, sour and salty things. He often asks for food. He wants to eat, he just doesn't seem to be able to get past a certain point, a few bites here & there.

Is this because I have never focused on volume and measured or weighed his food? Is it because I give up too soon? Is it because he is not really hungry? Is it because he has weak facial muscles? Is it a structural problem due to his micrognathia (small chin)?

I don't know. Most likely it is a combination of all of the above factors, but I'm willing to try something new and different. I am willing to surrender my child to a group of people who are looking for the same answers. This is not about what I WANT. This is about him.

My goal is no longer just getting calories into him, the tube handles that just fine. My goal is to have him enjoy the experience of eating, because clearly he CAN and clearly he WANTS to. He is at an age where he notices the difference in things. As much as he is comfortable with his tube feedings, he is also recognizing when others are putting food into their mouths. And frankly, he wants into the Club.

It's my job as the parent to advocate for that to be possible.

So with that said, our formal feeding evaluation was set for the first available spot, which happens to be in late July. Now that's more like the wait I had initially expected.

But as luck would have it another phone call came this morning, our new appointment is set for next Tuesday at 8AM. Yes, you read that correctly, another cancellation means that four days from now we will meet the Breakfast Club. I think that's a much catchier name than "the feeding team", don't you?


Thanks for peeking,

Photo credit: Neelrad

In Which We Celebrate

Tomorrow is our 1st Blogoversary. Can you believe one year has come & gone already?

Tomorrow we also have some pretty big things happening in the medical mumbo jumbo department; which means Mom is busy, busy, busy and has no time to blog. HA!

So for now I'll leave you with a little vintage Austin.

A year ago this week, before most of you had even heard of Austin, some very exciting things were happening here. Watch!



Austin's First Steps - 18 Months & 10 days




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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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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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The Sincerest Form of Flattery

Imitation is Austin's new thing.

He "dances" along to Dancing With The Stars. He "acts" along side his favorite animated movies. It is providing us with endless hours of free entertainment.

I need two video cams going side by side so I can show you exactly what I mean. But let's just say that Disney should be feeling very flattered right about now.

One of his other-than-Disney favorites is 'Harold and the Purple Crayon'; we need to be careful when watching this one because if an animated Harold can draw on the floor, furniture and walls, then a real life Harold (aka Austin) should be able to do that as well. Nice try buddy!

When you think about it really isn't that unusual, we have taught him to sign (by copying/imitating) to us for the past two years. He just seems to have carried it over into EVERYTHING!





He loves to play along. He will imitate battle scenes with his sword and shield, riding scenes by jumping on his horse, and as long as he stays away from swimming scenes I think we'll do fine.



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What A Nightmare!

When I went to bed last night I had no worries about this entire Speech Therapy (ST) issue. (Read here for background info.)

Today I wake up to complete chaos. This not how I want to start my day. Ever.

At 8:30 AM I received a call back from the ST clinic. I called them twice yesterday so we could get Austin back on their schedule twice a week. I was informed that they would no longer be seeing him as an Early Intervention client due to "conflict of interest." Wha?!?

And furthermore, perhaps I should seek out another vendor for services blahblahblah. The policy of their clinic is yaddayaddayadda but if I chose to accept what the insurance is offering they would be glad to see him. Huh?

Confused? Yeah me too.

So I promptly called our EI coordinator for clarification. There must be some confusion with all this, surely they (ST clinic) are wrong. Now I consider myself a pretty savvy person, educated and whatnot, but these people are talking in circles. So now I'm wondering if I had it all wrong. Crap.



Our EI coordinator calls me back fuming. She says that she has already contacted new vendors for us and hopefully we can make a swift switch. She says the impression she gets is that his current ST wants to drop Austin from their caseload. And get this...here is the reason.

It's a long story, but the short version is that his current (well, now former) ST doesn't think "that there is anything wrong with him" "he looks fine" "he's not that sick" were a few comments she made to our EI coordinator.

So they don't "buy" the whole he's medically fragile "story", after all in the past two months he hasn't been THAT sick. Well unless you count that day we spent in the ER for BLOOD in his tummy. But, yeah he's not THAT sick.

Translation: They do not want to provide him services in the home. Period.

HELLO, that's the whole point lady.

You see this is how it works: medically fragile child receives ALL therapy in the home and has limited contact with others. That is how we keep him from getting sick in the middle of winter!! He, basically, only sees his cousins, immediate family, nurses and therapists here at home.

I even called his Pediatrician to get a letter stating the above, just to be on the safe side. But really no one is requiring that "high risk" language except this particular ST. The point is moot now as we are moving on. Just not how I wanted to start my day.

The real kicker is the ST clinic name is My Dream.  My Nightmare is more like it.

In other news, you can read the beginning of this lovely story over at 5MinutesForSpecialNeeds.com Starting today I will have a weekly article up every Thursday.

And if you are interested in how our Nintendo Wii Fit Plus experience is going, you can drop by WiiMommies.com for that update. (Last I checked there was a slight snafu with my article posted there but hopefully that will be corrected soon. I did not write it in duplicate.)


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Raise Your Sippy Cup

Today could not have gone more perfectly. Austin had his fourth and hopefully LAST MBSS (Modified Barium Swallow Study) this afternoon, and even without a nap {clear meltdown territory} he did absolutely GREAT!!

It has been eight long months since our last MBSS study during which everything went WRONG. All that feeding therapy and focusing on drinking has paid off.





Ladies & Gentleman Austin is cleared to drink thin liquids. I repeat, CLEARED for THIN!!

For those who are confused at the moment. This is HUGE, BIG!!

Read: an EXTRAVAGANZA of Awesomeness!!!

This means we no longer need to fight with the insurance for thickener {they never pay it, by the way.} Our HHC charges a hefty $145 for a case. And more importantly we no longer need to thicken ANY liquids, which is awesome because I am down to my last 5 packets.

Austin is in for a world of shock! He has been on thickened liquids since he was 2 months old. Tonight we will celebrate with some un-thickened Apple juice at a Sophie & Bella's T-ball game.

Raise your sippy cups to Austin *clink*


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PS: We'd love your VOTE for us over at 2010 Blogs by Latinas Awards! We are nominated in three categories: Health, Kids & Parenting. Gracias!!

I Didn't Make The Cut

Feeling that my writing mojo needed a day off I have decided to delight you with pictures.


It was a beautiful day so we went outside to play Golf.





As it stands, Charlie Woods has nothing to fear.





It appears Austin prefers Football or Swords to Golf.





Why do I hear a collective sigh of relief?





We stepped in doggy poo. {Sorry, no pictures available}





We pretended it was a sand trap.





I have learned my lesson, tomorrow I will stay inside and write.





I hope the Nurse brings herself an extra pair of shoes.


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Duct Tape Has Many Uses

Do you see what I see?








Lest you should think *I* taped his feet to his tricycle pedals, it wasn't me! His physical therapist carries duct tape in her bag for just such occasions. Is it bad that I asked her to leave it here?


You know, just in case he decided to ride his bike tomorrow.


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Let Him Eat Cake!

You may recall that Austin has some eating issues . {cough!} But this weekend he decided to celebrate the New Orlean's Saints Super Bowl win in true French fashion, eating!!





Okay, so he was really just licking it, still Marie Antoinette would be so proud!





Cupcakes for the Super Bowl? We also celebrated several birthdays for my brothers and my nephew. So Yes, cupcakes for the Super Bowl!



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Feeding Therapy - It's Paying Off, Baby!

Yesterday was Austin's 2 Year Tubiversary!!! Excited? I know, me too. The way I see it is we can be unhappy about it or we can embrace it. So we are embracing feeding therapy and Austin has made some significant gains since we started using his Passy-Muir valve during sessions. {happy dance!}

He has been doing really well with food or drink offered to him and continues to favor things like shredded cheese and chips. He is a little salt lick , just like his mom. {I'm so proud!} You'll see in tomorrow's post just how far he has come with food.

Now mind you I said he is doing well, translation: he is not pitching food or beverages across the room {often.}

Lately we have been focusing on drinking. Just like every parent who has a child with dysphagia, we have an array of once used sippy cups. We have an arrangement, Austin & I. I scout out sippy cups and purchase them; Austin tries them once and then they go to the used sippy cup lot. The lot is FULL! We have tried them all, straw, no straw, valve, no valve...open, shut and upside down cups. So you get the idea. We had a similar arrangement with bottles, back before his tube feeding days.

Currently we are focusing on using a Nosey cup. This cup is a special plastic cup used often in feeding therapy. It is measured appropriately {one ounce of liquid} and has a cut out for the child's nose area. The special cut out is essential because otherwise a regular cup might cause Austin to tilt his head back too far and attribute to aspiration.





During a recent therapy session I was able to capture some video of him drinking from a Nosey cup.  WOOT!





All of this preparation will come in handy for his next swallow study, which has yet to be scheduled.


Thanks for peeking,




Photo courtesy of Talking Child

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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The Teacher Who Deserved A "Time Out"!

Today was our Annual IFSP (Individualized Family Service Plan) with Regional Center and all of Austin's therapists to plan for the next year. I had a festive assortment of fall themed donuts & tea on hand for our 10:00 AM Meeting. Pretty huh?



I had the OT, PT, Infant Stim and DHH teacher here. Austin was so excited to see them all in one room at the same time. I was even planning to take a group picture. It would have been a perfect meeting...EXCEPT...{insert the scratching sound of a record being ripped off the turntable}, one person was a huge buttinski and ruined the whole thing.


Don't you just hate that?


As soon as the DHH teacher walked in I could tell something was wrong. She looked around confused and immediately asked why Austin was sitting with another therapist. I told her they were here for the IFSP Meeting. She was like, "What IFSP?"

I was so ticked!! The only reason we booked for today at 10:00 AM was because of the DHH teacher's availability. I wanted to scream at her - What do you mean, 'What IFSP' you dingbat! The one YOU made me plan for today. The one YOU made everyone rush for. The one other people rearranged their schedules for...THAT ONE!


So let's backtrack to last Tuesday, shall we:

She (the dingbat*) told me she could only come for an IFSP during her regularly scheduled visit time, Tuesday at 10:00 AM. She said next Tuesday the 13th was best. I said that was fine. I contacted our RC Coordinator and she agreed to the date and time. The RC Coordinator has just returned form Maternity leave and asked if I would like to contact the other providers and see if they could have reports ready for today. I agreed.

Meanwhile, unbeknownst to me, the DHH teacher took it upon her self to contact the RC Coordinator and changed it to another date that worked for HER. The Coordinator assumed that I approved the change so she booked it for 2 weeks from today, Oct. 27th.

Gee, that would have been fine, except someone forgot to tell ME and the four other therapists who showed up. TODAY!

To add insult to injury, not only did the DHH teacher change it, she then lied to me about it.

Today, while we were all waiting (and waitiing) for the Coordinator, I asked her if she had spoken with the Coordinator or maybe someone from her office to make a change and she said, "No." Straight to my face and in front of all the other therapists she claimed she knew nothing about it. ARRRRRRGH!!! I later confirmed that she was indeed the one who had made the change.


The Meeting:

So we had the IFSP meeting WITHOUT the Regional Center Coordinator. Not exactly ideal. And not LEGAL, I might add.

I conducted a round table and everyone gave their assessment of Austin's abilities, goals and recommendations. It was a thing of beauty, I sure wish the Coordinator hadn't missed it all.

Luckily, minutes after everyone left the Coordinator called me apologizing. She thought I had made the change and she outed the DHH teacher. It turns out she had an open schedule so she was able to make it out today and meet with me, alone, at 2:00 PM. We had a two hour meeting; I gave her the update from all the other providers and we signed the necessary legal documents. So now we are legit!


The Outcome:

Just as I predicted last week, Regional Center wants to discontinue funding Austin's OT, PT, & Speech services. Not because he no longer NEEDS them, but because a new State law signed July 28, 2009 says they cannot fund them without first attempting to collect for these "benefits" from our private insurance.

So we need to jump through some hoops and see if his insurance will cover it. If they deny it, then RC will have no choice but to step forward and pay, after we appeal with the insurance. Oh yeah, fun times!  Obviously it would have been ideal to delay this whole process for as long as possible and we would have waited until November if it were not for the buttinski.

So the clock starts ticking today. We have 45 days to get coverage or denial from Medi-Cal. From that point, if we have not heard back from them within 45 days, we will have an additional 30 days NOA (Notice of Action) to discontinue services. So all in all, we will still remain with our current providers until the end of the calendar year.

It is lucky for DHH Teacher that I will not see her again until the 27th, so by then I should be past the anger and frustration. Although I reserve the right to give her a Time Out!



* I feel compelled to defend the School District's DHH "Program". Austin's regular DHH teacher is out on Maternity leave until December and the dingbat is a "temp". She is a retired DHH teacher and is only working for 25 days. So in that span of time she has decided to wreck havoc on my life.

Thanks for peeking,

Be Careful What You Wish For...

because you just might get it...and then begin to hyperventilate!




No, I did not win Lotto or Top HealthBlogger, yet.


Do you remember when I complained about all that therapy homework? Sure you do, because I know you live to hang on my every word. (HaHa.) So yesterday I figured out the way of the Universe - the hard way.


This is how it goes:

I complain about something random like say, homework, and BOOM bad stuff happens. I complain about REAL things like I need a bigger car or more sleep and the Universe responds with Nothing, Nada, Zilch, Zippo. Thanks, Universe!

So it turns out that after all the trouble I went through to get a good schedule worked out Austin will likely be getting discharged from Regional Center services such as OT (feeding therapy), PT (Physical Therapy) and Speech. Well, technically he is not getting cut from Speech because they never started it...but that is another story.


For days, weeks, nay months I have sung the praises of Early Intervention and how much it has helped Austin. I created video montages showing his progress and this is the thanks I get?

Regional Center informed my yesterday that Austin will likely be cut from the program for OT, PT and Speech services. Um, seriously...Deaf kids cut from Speech? Niice.

The reason: Effective July 1st a LAW was passed in CA that RC cannot provide these services for Infants & Children. Thank you Governator for a job well done!



Can I SCREAM NOW??? DEEEEP Breaths!


It has now been mandated that our "Private" insurance cover these services. Um, bad plan. Austin's insurance is Medi-Cal, which is another cash strapped State funded program. How does this make ANY sense?

So next Tuesday, at 10:00 AM I have an IFSP (Individualized Family Service Plan) Meeting set up with Austin's RC coordinator, DHH teacher, Occupational Therapist and possibly the Physical Therapist, as well. Do you think if I offer bagels & cream cheese they will let him stay in the program?

The one thing we have going for us is that, in all likelihood, his insurance will send us a BIG.FAT.DENIAL for the above mentioned services. This may eventually work in our favor, as then RC will be forced to put him back in their rotation. But not without first punishing us for having crappy insurance, by cutting down his services from once per week to twice a month or something crazy like that.

So Universe, I have decided that I LOVE homework and promise not to complain (loudly) anymore if you just fix this!


Thanks for peeking,

Homework

Is it just me?



Or does anyone else with a Special Needs child feel like they are up their eye balls in homework from therapists?

I really thought by graduating from college I would be done with all this homework stuff. I mean Austin is not even 2 years old and not even officially enrolled in school.  Yet suddenly, I have a TON of homework. Never mind the stuff I brought upon myself recently, like switching nursing agencies and potty training.

Austin currently has 5 therapists, which means I have 5 times the amount of things to keep track of every week, including schedule changes to accommodate for {their}jury duty, out of town weddings and plain old cancellations.

The DHH teacher handed me a stack of materials and told me there is even going to be a little quiz next week. And get this, she gave me a VHS to watch. Um. VHS? Do they even still make these?

And God forbid I don't attempt to DO all this homework. I mean, I HAVE to do it because if I don't then my kid will be at the back of the class. Class? There is no class. Whew.

Um. Wait! Yes, there is. They are called the typical kids and we are already behind them. Damn.

I want be one of those moms who has time to bake cookies (and take great pictures of them), make graphically delightful & inspired potty charts, plant flowers that actually grow and blog about it in "my spare time."  You know her. I think she may even Tweet in prose. I am in awe of her.

Instead, most days I am the mom who feels snowed under by this, that and the other thing and wants to live out the rest of my days in a blissful spa experience. (You can't blame a girl for dreaming.)

But not today. Today I am busy doing my homework.

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Wordless - Thumbs Up!

I think I shall try a fork.
I think I shall like Spaghetti.



More (or less) Wordless posts @ Special Exposure Wednesday, Ordinary & Awesome, 7 Clown Circus, Mom Dot and Wordless Wednesday HQ.


Thanks for peeking,