New kind of normal

Bump......repost.......

2011-11-28T20:37:00.004-06:00

Hi Turner students!
Thank you for coming here and learning about my Alex, and our journey as a family!!!!
If I could travel back in time and talk to myself. Let myself know that everything I was feeling then would heal. That knowing something wasnt "normal" with my child would one day be ok. The fear, the what ifs would all be gone 4 years later. I guess that wouldn't be life though. So while these feelings were very raw and real. 4 years later I wouldn't want anything different. My ALex has transformed me. After you are done visiting this blog if he has just transformed one of you, that is one step closer to where we should all be.

I wanted to share another moms interpretation of what she feels it is like raising a special needs child, many of the RTS parents have adopted this as there story too, below I wrote my own version of where I am at right now. (This was written in 2008)

WELCOME TO HOLLANDby Emily Perl KingsleyWelcome to Hollandc1987 . All rights reserved

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." " Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.Gloria, mom to Scott (19 w/RTS) and Lizzy 4

I haven't made it to Holland yet, my plane crash landed. No one around me can help, they never crash landed before, there flights have always made it to Italy, their life vests don't fit me, and no one has a rescue boat, but they say they will pray for me. I'm treading water, and the waves are relentless, sometimes I am swept under by the waves with all the tests, appointments, and pain my son goes through. Sometimes the wave of grief pulls me under for the longest time, so deep I cant see the light at the surface.My friends and family are flying above, looking down at me with sad faces, they don't know what to do or say, sometimes they don't say anything at all, I watch them living as if everything is normal, I guess it is for them, don't they see me drowning down here. Even God it seems just watches me fight to keep afloat. I can see Holland's coast, its not too far away, I know that its "coast guard" will be what brings me to my new home. Thank you to all of you, you know my deepest pain, you share my broken heart, I see hope in all your stories. The strength that me and my family will gain, the lessons to be learned. Right now I'm still off the coast treading water, the waves are still too high, but I will keep fighting to stay afloat, and I will be home soon.

By Jessica Pruitt 2007mom to Noah 6, Joel 3, Alex 4mo RTS

In idle

2011-11-17T13:43:00.006-06:00

Button placed (G Day)
4 years later

That was what she said......The wonderful Dr. Cox. Lets keep his g-tube idle. Not in use............NOT ACTIVE. We are just 3 days to the 4 year mark that we were re-admitted to the hospital for aspiration pneumonia which began the ball rolling on getting the g-tube placed. Now we have been given the green light, err I feel ready to turn on the green light and not use this miracle called a mic-key button. LOVE the button! That little piece of plastic kept Alex out of the hospital more than I can count on my hand. Kept him growing better than expected, and gave me a peace no doctor could give me.

Alex eats, and drinks enough that I and his doctors don't feel the need of relying on this plastic to keep him going.

Next goal to get the boy to pick his own cup up and choose to drink........For now, Ill gladly hold it for him, and the button will be idle.................

Playing keep up

2011-10-15T20:44:00.005-05:00

This is officially the longest have gone without blogging. I have never been busier. If I'm honest I have never been happier.
This blog started out very much as therapy, a place to vent the feelings that having a differently abled child brought.
From time to time I am reminded that Alex is different, sometimes it still stings, I guess. I just don't need to vent as much, and I could be wrong, but it doesn't hurt anymore.
I know that the future will bring new challenges that I wont even think about right now because I don't need to.
At this moment in life things are perfect.
Don't you think? Fall is here, school is here, and I have started working full time. It is an adjustment for all of us, but it was time. Speaking of time, I have none. I feel like I am always playing keep up. With the laundry, with the boys, homework, friends, husband, there just isnt enough time.

But, things are perfect.

And like Max is always playing keep up with his brothers, I will do my best here on the blog;) That is when I find the time!

Perspective

2011-08-19T15:52:00.011-05:00

Alex no longer has a PDA!

After 4 hours of travel time total, and 3 hours at the hospital, with only 30 minutes of that time being the ECHO, we learned that Alex does not have a PDA, the surgery worked!

We were also told that the septum and his aorta are misaligned.

Basically the problem this could cause is a blocked aorta. However, the doctor who is rather good at what he does, is not concerned with the misalignment at this point. He wants to see us back in a year.

I am a little sad. Here I was hoping we would say goodbye forever.

Perspective though............

Alex is not sick. We are not in and out of the hospital, thriving and he is growing like a weed.

perspective.....

Oh how I will miss you, let me count the ways....

2011-08-15T04:28:00.001-05:00

So many different things I love about summer, the green grass, the warm sun, taking in the view

1. I will miss staying up past bed time....................

2.Sitting in the shade on the deck feeling your breeze.

3.Taking long walks through your parks, and zoos.

4.Cooling off in the water from your heat.

5.Basking in your sun.

6.Staring at your endless blue sky.

7.Tasting your treats only you can bring with someone I love very much.

8.Going out and enjoying your quiet summer sounds........

9.Snuggling in comfy summer pj's

10.Watching hours of baseball.

11.Waiting in line for roller coasters.

12.Picnics on a blanket.

13.Pool parties.

14.cook outs with family and friends.

15.floating

16.Fireworks

17.Running through the grass in my bare feet at top speed.

18.Priceless moments that winter cant match.

Oh summer, please don't go.................................

I'm not ready

School starts this week for my 4th grader, 2nd grader, and 2nd year preschooler, and life keeps moving.

Happy double digit birthday Noah! 10!

2011-08-13T05:30:00.000-05:00

Make a video - it's fun, easy and free!
www.onetruemedia.com

I could have sworn.

2011-08-12T05:05:00.000-05:00

See, here's the thing...........................................

When you sit 10 hours in airports trying to entertain yourself with phone apps, and lots of reading.

Because your flight is delayed, again, and again.

But then you finally make it to that friend you couldn't wait to see.

Take red eyed pictures with her dog.

Eat fabulous yogurt with her circle of friends.

Get up early and go on a run.

Hit the road and head to Charleston, while singing, and consuming an insane amount of tootsie pops. I'm talking in the 20's easy, and that's just me.

When you can walk, and walk, and walk while taking in the sights, and talking about absolutely nothing important.

Play photo shoot in a historical alley.

When you can do this and not feel uncomfortable.

Run to breakfast instead of drive.

When you can ask strangers to take your picture.

Have another helping of yogurt

In a pair of these.

When you can wait out a rain storm without a care in the world of the time, just to sit on the beach for a bit.

Search for a new place to eat, and find the absolute best,

place to eat.

When you can wear a dress like this just to go get ice cream.

And walk King street a million times.

Or have cupcakes for breakfast.

and one is not enough.

So you share 3.

Then on your flight home you think, the funniest thing is that we both have a child with Rubinstein Taybi Syndrome like it is some kind of crazy coincidence, and not the only reason we met in the first place, cause I could have sworn we grew up together.

You know your friends for life.............................

Its not you its me.......

2011-08-10T21:07:00.002-05:00

Or actually, it is Alex.

I'm breaking up with you food processor, and frozen food cubes. This is what Alex had for dinner tonight after eating his cheeseburger for lunch......Fish and pasta.
I know this is sudden. I'm caught off guard too, but I guess I always knew this day would come. I cant believe I'm even posting this!

What did you have for lunch?

2011-08-10T13:38:00.006-05:00

I am not a fan of my kids eating fast food. I do however let them. When I need an easy out, when we are on the road, and sometimes just because. Whenever they bite into their french fries a little piece of me cringes, but I move past it and let them. Good, bad, I don't know. Today is different. Today every fiber in my body rejoiced as I watched him bite, chew up, and swallow his burger. Not one gag, not one cough. Alex ate half of a double, yes, a double cheeseburger today. It was not pureed, and not a part of me is sad that he had fast food for lunch. The child ate half a double cheeseburger. The child who aspirated, who gagged at stage 2 baby food, the child who at one time took an entire day to down a nutrigrain bar. The same child I have been pureeing food for going on three and a half years.

Yes, I cut it into bite sized pieces with my handy dandy pizza cutter.

he piked up the bites himself and swiftly put them in his mouth!

And his ketchup stained face and hands have yet to be wiped. I'm just so glad that they are stained at all.

Wordless Wednesday

2011-07-27T01:20:00.001-05:00

It might be heaven when

2011-07-22T03:10:00.000-05:00

There is unlimited fishing with your brother.......................

unlimited swimming and sand........................

paddle boats with your dad......................

Room to run

and jump

plenty of time to do nothing...........................

early morning walks......................

late evening floats..........................

Sitting around the table with family...................................

serene scenery to look at.............................

Or it might have been just another great camping trip with the family.

That they will never forget.

by himself

2011-07-21T11:00:00.003-05:00

I have been spoon feeding Alex since March 2008.
It is like breathing. It has just been the way it is. At school Alex is mostly on his own when it comes to eating, and that is what he does, he feeds himself. Here in the comfort and habits of home, Alex knows and is used to being fed. It is easier, and even though it is how it had to be, it is not how it has to be now. He can feed himself! However, since there aren't an unlimited hours in the day, and I still have those with more knowledge telling me how many calories he "needs" I do a lot of the work for him. BUT, change is happening, change will come, and he is doing it by himself more and more. Also, he can do this by himself.........

And even better? He is eating solid food along with his puree at every meal. What did we do to get this to happen? Not a thing. Just time, lots and lots and lots and lots of time.

Spontaneous vacation

2011-06-25T20:00:00.010-05:00

Sometimes being spontaneous turns out to be the most fun! We had to get away! So we drove to Saint Louis spent the night, and then spent the day at the zoo and the science center.........

It so much fun!

wordless wednesday

2011-06-22T03:21:00.000-05:00

Joy is

2011-06-21T15:22:00.003-05:00

and the ugly...............

2011-06-18T09:09:00.003-05:00

Alex was not a happy camper at school last week. Thursday was the worst. In tears when I went to pick him up, and cried all the way home. At home I took his shoes off, and he acted as if I was pulling off his feet. His shoes were hurting him. Too small? Too tight? A toe in the wrong place? I'm not sure, but the boy just needed to tell someone that his shoes were hurting him. His teacher tried changing environment, holding, hugging. Nothing worked. I try and wonder what it would be like if I had a pain, but I could not speak. People in my face hugging me, offering all the wrong things. So unbelievable frustrating, and I don't think that word quite covers it. This is the ugly side of non verbal. An email has been sent and a hurting picture will soon be in his book of communication. It is just simply unfair.

Summer, Summer, Summer TIME.........

2011-06-14T07:38:00.001-05:00

Sung to the tune of Will Smiths version.............

Hangin around..............

2011-06-13T01:42:00.003-05:00

It is all we have been doing....................

But, not really. Joel has been going to Tae Kwon Do.

The big boys also just finished up with Camp Invention, which they loved!!!!

Between Noah's baseball games we have been able to go to the park.

Bella and I have been getting up in the early hours and doing the Couch to 5K program. I just finished week 4, but I think I will repeat it, as I found it very harsh.

I have been sitting in this very chair doing page after page out of my workbook for my CNA class.

Alex likes to sit by me, Ill miss that when he is off to school very soon.

Monday through Thursday for 4.5 hours I will be sitting here. Absorbing lots of information.

Oh look, I put this picture in twice. It is a good one though. He is so handsome.

So there isn't much time to just hang out these days, but when we can, we make the best of it.

Still goin strong!

2011-06-09T01:36:00.001-05:00

Alex continues to communicate.
I have a whole list of words that need to be added to his repertoire, and should be when school starts this month.

I continue to be thrilled each time he uses his "voice"

While on the topic of communicating. Alex is doing great! However, as much as his brothers say out loud small thoughts of randomness, thoughts of emotion, and ask questions. I know very well that Alex is not yet able to communicate fully. He has constant thoughts that I don't have the pleasure of knowing. More importantly he doesn't get the pleasure of sharing.

We are in the process of moving bedrooms around, and have been considering putting Alex in a big boy bed. When he wakes up at night (which he does at least once every night) he goes back to sleep on his own and happily cause where else is he going to go? When he is moved to a bed, he will have freedom to get out of bed, he wont have the freedom to tell me those random little thoughts kids tell you when they get out of bed at night. Is he scared, thirsty, just wants a hug? When I put him back in bed, and he cries, what does he want to tell me? There is a high number of kids who are intellectually different, and who happen to have RTS who have some trouble staying in their beds.

Considering all of this, I am at a loss of when to do the move...........

Thankfully, communication is on the move, and it will only get better.

They are everywhere

2011-06-07T13:27:00.004-05:00

Life right now

2011-05-27T12:34:00.003-05:00

Today is the first day of summer vacation! I now have a 4th grader, a 2nd grader, and a 2nd year preschooler. Very exciting! School was winding down but life was not. Things have been so busy, I hardly have had time to think and have thoughts to write down.

Joel has started Tae Kwon Do which he loves. Noah is doing baseball, wrestling, and just finished up soccer.

We will be spending much time at the pool, a trip to ride coasters, doing some camping, and oh yes, I'm going to school. Mon-Thurs from 5-9:30. Here I go! I'm nervous, and mostly excited of what this will bring! I hope by the fall I will have a job as a CNA!

This is life right now. I have nothing deep to say, just enjoying the boys.

Whats that you say?

2011-05-14T07:06:00.002-05:00

I want to take a bath........ Even though it was 3:15 in the afternoon, and I had 4 kids outside (2 were not my own), and one down stairs, with dinner to prepare this little guy brought this sentence to me. "I want to take a bath", and a bath he took! This is the first time Alex on his own decided what he wanted, and found me, and made his request known.

DeLorean

2011-05-09T03:56:00.000-05:00

If I could travel back in time there are lots of times I would go. Things I would change, choices that I made.If I only had one trip to make I would travel back to September 7, 2007. I would tell myself that Alex was going to make it, and I would tell myself not to waste my time grieving the loss of the typical child. To not waste a year hoping it wasn't so. I would tell myself that a lifetime of lessons would be learned in a short three years. That I would really find out, feel, and give what real love is. I would tell myself that no one is typical, and while it isn't always obvious we are all the same. If I could have just told myslef to see the beauty from the beginning, I wouldn't have missed a beat.

Mothers Day

2011-05-08T18:01:00.017-05:00

My day started off with a card signed by my 4 sweet boys........ We had breakfast together......

Alex and Joel were fascinated with a national geographic show on the ocean life.......

After church we had lunch together with my mom on the deck, yummy fried chicken, mashed tatos, biscuits and all sorts of wonderful sides...................

Did I mention the great gifts I got? Max brought me my new IPhone:)

This wonderful child made me a book of poetry.................

Cake lover, that is a fact!

I loved that he said extra pretty, but even better is that I am not lousy!

Working with babies lots.....true story.

Alex painted this keepsake box for me, I love it! My first hand made gift from him:)

And all day long I wore this gorgeous necklace that Joel made for me. Got many a compliment on it, yes I did.

By far one of my best mothers days indeed!

Happy mothers day!

2011-05-08T03:08:00.000-05:00

I love you mom......

Happy Easter!

2011-04-24T20:02:00.013-05:00

Love that Quaker man!

2011-04-18T16:48:00.002-05:00

Every morning Alex eats a bowl full of cream of wheat. There are yummy flavors and its a quick breakfast. That is key! This weekend I had run out of cream of wheat so I went to the next best thing........oatmeal. Not as quick, but giving Alex drinks in between every few bites really helped, and when the bowl was empty, his glass was half empty. After doing the math I found that if Alex drinks half (4oz) a glass at all 4 meals we don't, I repeat DON'T have to tube him during the day at ALL......Just in the morning for meds, and at night for meds......We just went from 5 tubing sessions to two. Just like that. Just because this Quaker man said so. I love that Quaker man. We are now just 300 cc's from being tube free! A week ago it was 740cc's.

When I grow up.

2011-04-13T20:09:00.003-05:00

When I was 12 I wanted to be an FBI agent. Somewhere between boyfriends, heartbreak, and immaturity (darned those bad choices) I stopped thinking about what I wanted to be, and somehow just ended up in the radio broadcasting program at my community college. It sounded cool, but it certainly was not a dream. Not all was lost though, that is where I met my husband and best friend, and father of my boys, so not only can I announce a song in the right amount of time, but I have a awesome guy to show for it:) Then I went on to get my bachelors in social work, there wasn't much math, and I like to help people. Then I got pregnant, and decided I wanted to stay at home with my kids. Then I realized I needed my masters in social work to really be able to help people. Then Alex was born, and if you have been reading here long you know what happened next, so today I have officially decided to go back to school......(sigh) if only I had know what I wanted to be when I grew up when I was 18. It took hospital stays, learning a little bit of medical care, watching my son receive good, and well, bad care to decide that I would like to be a nurse when I grow up. However, since I am grown and already quite busy I can only commit to getting my CNA, an eight week course I will take this summer. Getting my RN will take more time and commitment than I am willing to take away from the boys, but for now I will be getting my CNA. Then I will get to work and actually get paid for it!!! I am more than excited to begin this new chapter! Oh, and I got my hair chopped off today too.

It might just be

2011-04-10T20:25:00.017-05:00

that from the beginning he had a smile on his face. It might just be that this was what I saw the first time I set eyes on him.

It might just be that hours after meeting him he was taken far away

on an aircraft that I havent even experienced.

It might just be that I could not hold him for two weeks.

It might just be all that trouble inserting the damn tube into his little nose, down his throat, and into his stomach, NOT his lungs, you know that might kill him.

It might just be the ordeal of his mic-key button procedure.

It could be that sitting up for the first time was a big deal.

It might just be that getting this chubalub to crawl,

took almost two years, what with hospital stays, sickness, and therapy

BUT finally happend making the wait worth the while.

It might just be that 3.5 years after he fought for his life he is walking out doors on his own.

It might just be the reason that this closet full of brother hand me downs in a size 4T means so much to me.

You changed me Alex, I see clearly now, Im so blessed to be your mom.

Spring break

2011-04-09T18:47:00.027-05:00

It is what has been going on around here. We didn't make it to the beach, or Disney. We did play outside a LOT! We planted seeds for our garden.

We stayed in our pajamas and played with remote control cars......

We kept syrup on our faces a little too long.......

stayed in our pajamas a little too long....... Arent those legs yummy?

Stayed in our slippers a little too long.......

With grandmas home made bread we

made french toast........

Joel and I went on a date to McDonalds and a movie.......

We played lots of Apples to Apples.....lots......

The big boys made their containers for the cub scouts egg drop, their science teacher pops helped out........

We made a camp fire in the backyard......

Roasted marshmellows.......

Even a peep, in honor of the season.......

Then it seemed violent.

Set up camp under mom and dads window.......

Made it till 3:00 when the hail and lightening came..........

Played lots of soccer..........

Shot arrows into the sky with Joel's new bow......

There were also two sleepovers, one playdate and another movie..........

We had so much fun with the boys.

Now we are in for the 6 week strech before we can do all this, all summer!

One year ago today......

2011-04-02T07:14:00.002-05:00

I am so glad this is far behind us.

The glass is half full........

2011-03-31T20:19:00.003-05:00

Actually it is empty......... Can you spot it? Here, a closer look.

This glass is infact empty.

This is SEVEN ounces Alex drank by MOUTH today.

This is the most he has EVER, yes, ever, like in 3.5 years taken in by mouth.

He hasnt accopmplished more than 68cc since he was a few months old, and he aspirated that so it doesnt count.

Facts: He never asks for a drink, but will willingly take a drink from this cup or a "nose" cup when prompted. 7 ounces doesnt even touch the fluid requirements for his weight. I kind of had to follow him around today to make this happen. Fact is, Im so proud of him:)

BFF

2011-03-30T03:24:00.000-05:00

That is how he rolls......

2011-03-29T07:23:00.002-05:00

He has the most adorable way of saying shoes and waffle. He seems to have a southern accent..... He does however, sometimes seem to speak a form of Japanese, with his southern accent........ He loves, loves, loves to go outside........ He goes to bed at 8.......... He loves to take a bath......... He can knock you down with his smile......... His favorite food is Italian......... He loves his dog........ He wants to be read to......... He loves to play with anything non toy, unless it is on wheels, then that is his fave....... He goes from 100 miles an hour to sleeping in his crib in a matter of minutes...... He has not said mom, momma, mommy.......... He is the baby........ And that is how he rolls.........

How Jessica got her groove back........

2011-03-27T05:57:00.005-05:00

I didn't go to the beach. I didn't find myself on the dance floor, or travel to Italy. It wasn't learning a new language, and trying new food. It was a simple Saturday with this guy...... To buy new curtains, you remember because of this guy........

To go see a movie.......

It was 6 hours alone with my man. A very rare treat in this time and place. It was therapy. Now I can get my groove on again. Making breakfast, cleaning up, doing laundry, vacuuming, picking up toys, finding the happiest way to get boys to do homework, reading, brushing their teeth, and aiming a more direct aim for the toilet. Yes, this is my groove, and it is back. At least for 6 more days........

In

2011-03-24T20:45:00.011-05:00

He wanted to go in that tunnel so bad. From the day he was born I have stood at his side filled with the need to help him. There wasn't much I could do to help him breath, so I red books on tape so he could hear my voice constantly. I sang to him. When he came home the first sound of unhappiness I jumped to his rescue. Whether or not he needed me to is another question, but the post traumatic stress of him almost dying stood in the way of me not being his constant crutch.

As I sat on the deck taking in the 75 degree breeze, I could see that he wanted to go in that tunnel. He studied it. He peered in a few times, then back out not sure if he could do it. IT took all I had not to run to his side, push and pull him, give him what he wanted, and fast. I had to sit on my hands. Half of his body made it in. I held my breath, then he came back out, frustrated. Biting my lip I tried to take in the blue sky and not notice that he wanted in that tunnel, he wanted to explore, he wanted in. I wanted to help.

Again, he managed to get in half way, and it seemed as though he must have been thinking about how he could get all of himself in without going out the other side. Turning himself in the tight space, maneuvering his big feet with those shoes, he struggled, I thought about helping get his shoes unstuck, but something made me just sit there and watch.

His hand reached out to touch the grass, maybe he was confirming that he had made it in.

Glancing out to see his success, not caring or aware of the enormous smile on my face.

He was in, and he was proud. Not because I helped him, not because I was proud. This was all his. He made it in and out on his own.

Success, his and only his to hold.

Do you see what I see?

2011-03-24T20:44:00.000-05:00

Memories

2011-03-18T08:01:00.000-05:00

Some of my favorite memories are of sleepovers. As a child I never noticed this side of them though.......

but I wouldnt have it any other way......

Oh Bella.......

2011-03-16T19:55:00.003-05:00

Slice of cake......

2011-03-15T21:23:00.008-05:00

In a perfect world I would own a cute whimsical bakery. I don't say this because I am a awesome baker, but in a perfect world I would be. I would have all the time I needed, while my boys played quietly in the perfectly green yard surrounded by picket fence, and I played with recipes all day long, in my cute little apron, kissing the boys as they chased butterflies with just a bit of flour on my cheek..........Can you see it?
Truth is, I make box cakes. I make them 4 times a year, and that is it.

But this slice of cake was a good one.

The day was a little slice of life I hope Joel always remembers........

Now I have until August before I make another cake, lots of time to think about my next creation!

Seven years of Joel.......(turn music off at bottom of blog!)

2011-03-15T04:10:00.003-05:00

Make an on-line slideshow at www.OneTrueMedia.com

7 years of Joel

2011-03-14T10:37:00.000-05:00

Tomorrow Joel turns 7. This weekend we had a crazy pool party with 13 of his closest friends...
I remember 7 years ago today. It was a Sunday, real nice out. Adam and I watched Lord of the rings, and walked to the park with Noah. I had contractions most of the night while I watched the weather channel. Got in the car around 3:00 am and headed to the hospital. Adam and I walked the halls.....I got my epidural......my blood pressure dropped 70 over 20....They shut my epidural off......nothing was numb......7 years ago tomorrow my most painful delivery occurred, but our second son was born.....9 pounds 10 ounces......He cares about every ones feelings....He can make anyone laugh....He rolls with the punches.....and brightens the room with those eyes, and his smile!
We love you Joel, cant wait to feed you cake for breakfast in the morning!

Meatballs, noodles, oatmeal, and other chunks of info!

2011-03-13T10:27:00.003-05:00

I can not believe how quickly the change in Alex's eating is happening. Just the other day I was telling you about the meatloaf and mac n cheese Alex ate.

Last night Alex had meatballs, and spaghetti, again NOT PUREED!

This morning I thought if Alex can eat a meat ball the boy can have oatmeal instead of his usual cream of wheat. Yep, I was right. He ate an entire bowl of oatmeal, and a banana on the side.

I don't worry one bit about the boy and eating.

He eats, he eats a variety of food, he eats healthy food. Food from every food group including meat!

Next step getting him to drink, and I don't doubt one bit that it will happen.

This Tuesday we go see our nutritionist, and I am ready to make some changes that will get him drinking. I'm wondering if we can drop the 300 dollar a case that's 12 dollar per can peptamin jr from our world, and let the boy get his calories from his very balanced diet of real food!

I don't think I ever believed this day would not come, but I didn't know when, I didn't understand how, and here we are.

So unbelievably happy about these changes.

Thank you Alex for teaching me to take the good and the bad changes with grace and ease. You are a rainbow after the storm.

Diamond in the rough

2011-03-08T04:08:00.000-06:00

So when you have a child that gets a diagnosis it leaves you with a number of new and trying responsibilities. To say it is rough really only scratches the surface when it comes down to it all.

When doctor genes sat down next to me in Alex's NICU room, and told me that my 8 pound 1 ounce baby had Rubinstein Taybi Syndrome, I was certain there was not anything good to be found. After swimming my way out of my self made murky waters, I have come to see the diamond in the rough.

While I was sitting on the couch with the doctor that day in September 2007, I did not know that I was suddenly "surrounded" by a new family. They were waiting for me, I was blessed with other children with RTS, other mommas of these children, fathers, and siblings, all who love someone with RTS, and who automatically loved my Alex, and my family.

All through my journey to where I am now, they understood, they had been there in the grief, and wonder. One by one we all reach that place where we no longer grieve, there isn't anything to grieve. We no longer wish, our wishes have already come true. We are a family, and these moments that we can get together are diamonds in the rough, or in my opinion- diamonds in the right.

This was just before we told the boys they wouldnt be going to school, but to the Wisconsin Dells!

The 6 hour car ride was surprisingly great! We have 4 awesome travelers.

The boys stayed wet, most of the time.........

Addie, and Alex (sharing a secret laugh) Sheridon, and William (RTS brothers and sisters)

Alex and Max in the bath after Alex threw up (after a fall off the couch.)

Alex chillin in a little quiet corner of the crowded room...........

Oh my sweet Caden.........

My "Bird" and Pam, another warrior momma I get to know.

Just a few of the RTS family.........

I do believe this was the best birthday I have had in all my 32 years. Lots of time spent with my children, my man. and getting to know this side of my family.

Diamonds indeed..............................

Straight off the stove, and outta the oven!

2011-03-07T18:40:00.003-06:00

Alex just ate a complete meal that came straight outta the oven and right off the stove! Not one thing was a pureed cube out of my freezer!
I mashed up the meatloaf he ate almost an entire slice, about half a cup of mac n cheese, a cup of apple sauce, and an entire yogurt!
I didn't even give him his peptamin jr his meal was so balanced!
Did I mention it was not pureed!!!!!

The top five worst things

2011-03-06T16:58:00.001-06:00

about tube feeding are:

5. making sure you have your extension tubing, syringe, and fluid with you wherever you go.

4. Ignoring the looks you get while "tubing" in a public place.

3. The reflux that often comes from having a piece of plastic stuck through your child's abdomen.

2. Changing the button in an emergency situation when your child has a full stomach.......

And the number one worst thing about tube feeding is.......drum roll.........

1. Waiting on gravity while the fluid goes down, so you can get to your other child who is purposefully making a mess of his dinner throwing food this way and that, since he knows you are stuck where you are because he knows you are tubing........

Gonna party like it's my birthday!!!!

2011-03-03T20:49:00.005-06:00

Yep, I am the big 32!!! To celebrate we are surprising the boys this morning who will come up the stairs, complain about school, and not enough sleep, with grumpy looks on their faces with a trip to the Dells instead!!!!

We are headed north to visit with some very special family. Or families that is. We all have one thing in common and that is some one we love so very much happens to have RTS. So we will hang out, talk, laugh, and go down water slides.

And......for the heck of it, its what I get for my birthday.

I would go as far to say that I am one blessed birthday girl!

Purpose

2011-03-03T09:01:00.005-06:00

We do it everyday.

We wave at strangers when they let us go first at the intersection.

We do it in passing when we see someone we know at the store.

Waving hello, and goodbye, thank you. It means so many different things.

We do it so much, it can hardly mean anything.

Waving is one of the first things most babies do to communicate.

It is something I have been working with Alex on since he could sit up.

I am confident he has had the motor skills to do this for a while, but I don't think he has felt it necessary when the therapist left his house to wave goodbye, I don't believe he wanted to show he could wave when being tested.

When Alex does something, it has a purpose. It has only his stamp of approval on it. He doesn't need the praise, or the high score. When he accomplishes something for the first time it is always on his terms.

A lesson perhaps? At least for me. Do things, even everyday things with great intention and purpose. Doing things because I chose to, not for praise or recognition.

So this morning as I was backing out of my parking space, and noticed Alex turn to watch me pull away. I gave him a wave and a smile, and with great purpose he lifted his arm and waved it back and forth. He wasn't being polite, he was saying bye mom, see you after school.

This exchange in communication had so much meaning to me because that was a moment Alex chose to say something.

Be still my heart.

R-word | Spread the Word to End the Word

2011-03-02T07:44:00.000-06:00

R-word Spread the Word to End the Word

Tonight

2011-03-01T19:00:00.003-06:00

Alex had macaroni and cheese for dinner.

It was NOT pureed.

I gave him ice cream for a treat.

Such normal everyday things, that he is doing for the first time, that I am not letting go by unnoticed.

From NPO/aspirating to mac n cheese and ice cream.......life is good.

Real world

2011-02-20T19:21:00.025-06:00

My boys always have on miss matched socks, Max throws magazines on the floor just because. This is also the place we seem to leave the baby wipes, in fact just before I wrote this Adam changed a poopy Max, and I changed a poopy Alex.

When I ask my boys to clean the basement/playroom lots of toys end up in the play house. I don't make the big boys make their beds.

They like to play the wii, a lot. Fortunately they have a list of things to do before they can play including homework, reading, cleaning, playing outside ect...... So that makes me feel slightly better about it.

I mean there are signs of video games on the walls of my basement.

The piano, where I had hoped to have a pretty display of pictures is also a place to place things after you walk in the door, or a play table.

The sink almost always has dishes in it......

With all the feet in my house, I sort of gave up on keeping the shoes organized.

I own every leapfrog fridge toy out there. The fridge DJ is somewhere else in the house right now.

Alex loves to watch anybody play basketball. He raises his hands and laughs with joy.

My master bath needs attention.

Bella has claimed this to be her spot.

My junk drawer lives up to its name.

I let my 17 month old have a bottle. He loves it, and I cant take it away from him.

The place of organization needs to be organized.

Instead of flour or sugar there are animal crackers.

I love to decorate the walls with the boys artwork.

There always seems to be a coat in the wrong place. ALWAYS.

Yep this is what the linen closet looks like.

There are always clothes on the couch waiting to be put away.

I have been told that my kitchen floor is very anthropology, but I cannot love it, and it cannot be what I decorate around.

That is the truth.

Wordless Wednesday err SATURDAY

2011-02-19T11:30:00.000-06:00

Life

2011-02-17T10:20:00.012-06:00

It is what I have been doing, and after Christmas life kicked in. We have been so busy with wrestling practice and tournaments. Enjoying the snow before it melts with friends.......

Celebrating love.......

Making and eating tasty treats.........

Through all the business, I don't have any trouble finding the time to notice, appreciate, feel thankful, and bask in the fact that this little man is walking all over the house. When I sit on the couch instead of him appearing on the floor all of the sudden I see his face coming from out of a room.

Life is good.

Snowed in

2011-02-02T20:58:00.014-06:00

Out the front door during the blizzard.

One foot of snow+4 boys+4 hats+8 mittens+4 coats+16 layers+one driveway full of snow and drifts+freezing temps+cabin fever=FUN!

Messy Max

2011-02-01T13:14:00.011-06:00

Once upon a time there was a boy named Max. Max made messes like a monster. In the mornings with his oatmeal, he made a mess.

On the stairs with his blocks, he made a mess.

At dinner time, can you guess? Yes! He made a mess.

Tracking snow all through the house. Leaving no corner untouched.

Teaching his dog, all of his tricks, and

hoping to hide some of his crimes with some of her puppy licks........

His mommy cant keep up with the laundry its so bad.

Chasing these partners in crime, and learning their tricks.....

At the end of the day, when he is all tuckered out, his mommy still gives him kisses.

Then puts him to bed and cleans up his messes.

What is that?

2011-01-25T09:41:00.008-06:00

There on his shirt? Its a food stain. Why is this something to blog about? Since Alex was able to eat we have been feeding him. For almost 3 year we have been spoon feeding him. For a big chunk of that time it was because he did not have the motor skills to do it himself. Also when his feeds took an hour because of reflux/throw up I would give him toys to play with so he would have something to do. Those days are over. He has the skills to feed himself, and the throw up is very rare. Alex and I love routine, we thrive on it, so even change that is positive is hard for both of us.

It takes longer.

But he is doing it!

He signs book with tears in his eyes because he is used to having that toy.

It is hard to change sometimes, but it is time. Frustrated and all this boy can do it himself!

I love you Alex:)

Good Gracious

2011-01-12T03:52:00.000-06:00

I LOVE THIS BOY.

The Dentist

2011-01-10T02:45:00.000-06:00

Last week Alex went for his very first teeth cleaning. He did fantastic. The only thing that scared him was laying back in the seat. He did much better sitting up. He didn't love it,but he tolerated it, and I was so proud of him. This was also the first time this germ fearing mom let him play with waiting room toys. Since he walked into the office I couldn't keep him strapped in his stroller. :)

Not happy, but tolerating, and with a prize bag to boot!

It's a girl!!!!!

2011-01-08T19:21:00.010-06:00

Today our family of six grew by one........ She cried as we drove away from her only home........

But after much attention and love from the boys she relaxed.......

Max was in love when we got home.

And thought he would give the puppy's blanket with her mommas sent a try too.....

The boys wore her out.......

She is settling in.......

We already love her........

Welcome to the family Bella.

Another feeding post?

2011-01-07T06:55:00.001-06:00

That's right!
You would too, if your once NPO, then only pureed eating baby for 3 years ate a forth of his shredded chicken BBQ sand which!
With pureed bites of BBQ chicken in between bites of sand which this boy didn't gag, cough, or choke at all, nope, not even once. At our last feeding therapy visit (you remember when he walked all the way down that hall), we were instructed to start giving Alex mashed or soft food, not pureed. Or along with the pureed. It started with this sand which and since then he has had baked beans, and lasagna not pureed, and to be honest not even mashed, just nickel sized bites all regular textured food!!!!!!! YIPPEE!
Someday the food cubes willbe gone, and I will have my freezer back!

That was then, this is now.........

2011-01-05T18:38:00.000-06:00

3 years ago I had to carry Alex in his infant car seat down that hall, all the way back to where you can see the exit sign to Speech/feeding therapy.
When he out grew the seat, I carried him.
When he could walk holding my hand I would walk him half of the way, then carry him the rest.

But, that was then.

I have no other words:)

Wordless Wednesday

2011-01-05T08:33:00.000-06:00

Snow Day

2011-01-04T20:30:00.000-06:00

A few days ago we had a snow day, well, it was really an ice day, but to follow tradition we will call it a snow day. It wasn't all work and no play, because we stayed in our pajamas.

We played trains.

Did puzzles.

did lots of reading.

Made homemade sugar cookies.

I love snow days, even without the snow.
So glad they are predicting snow for Christmas this year, the boots and sleds are ready!!!!!

Food art.

2011-01-03T03:11:00.000-06:00

A noodle covered in tomato sauce, an old source of gagging, retching, and throwing up. For 2.5 years I have been pureeing meal, after meal, after meal, and then to boot side dish after side dish. While this task still consumes me, while my freezer remains full of food cubes, there is a light, I see it at the end of this eating disorder tunnel.

From NPO to miracles, this is food art indeed.

Still eats mostly pureed food 7 ounces 4 times a day, still gets 97% of his peptamin jr by tube, but I will celebrate every milestone!

Helping Daddy

2011-01-02T05:06:00.000-06:00

I got shelves for Chirstmas!
Max loved helping daddy put them up.

Itsy Bitsy

2010-12-27T02:21:00.001-06:00

As I have said Alex loves music.
I played lots of music to him when I was pregnant, just popped the headphones on my belly, and he would move to the music then.
Just this summer I figured out that Alex would sing when songs would start, and stop singing when they stopped.
He sings with me, he sings with his musical toys.
When I pulled out the video camera he got shy, and didn't give it his all, but here is a little taste of his beautiful singing voice.
Make sure you pause the music at the bottom of the blog........

Christmas Day

2010-12-25T20:49:00.023-06:00

Started early, as in we were still up at 1:00 putting things together. Or Adam was. The Big boys were up at 6:00 sharp. I tortured them, and made them wait for the littles to wake up so we could all take part in the craziness together.

After opening we played with our loot........and ate pancakes......

(Noah put this over 1,000 piece Lego set together in about 6 hours)

We shot hoops in the living room.

We drank our milk before we hit the road.

A very snowy road.......To celebrate with the Pruitt side of the family.

Where more loot was found.......

more games were played......

Cousins laughed.......

Ending the night with another game of hoops.......One more Christmas in the books!

A Merry Day Indeed....

Merry Christmas!

2010-12-25T03:33:00.000-06:00

Christmas Eve

2010-12-24T19:21:00.023-06:00

We did lots of hanging out. That's my mom, and my grandma.

That is my mom and dad.

It snowed all day.

We opened some gifts.

Max got two adorable puppy dogs, because that is his favorite thing, they just couldn't compare to.......

The real thing.

Somebody needs a puppy for Christmas.

We ate, and ate, and ate.

We played in the snow.

We snuggled.

And now the stockings are hung by the chimney with care..............

Swagger

2010-12-23T20:19:00.005-06:00

It is happening!
He is walking!
He adds a cool swagger to his gate, its adorable I think.
Determined, full of courage, and such an inspiration!
Sometimes I see him go in one room from another, or coming down the hall.
He is choosing to walk 80% of the time! If he feels safe, he walks!
Just a month ago, he would only walk when asked or holding on to your hand or an object.
What a Christmas gift this is!!!!!!
You are awesome Alex, thanks for sharing your swagger on Christmas!

Revolution

2010-12-22T17:15:00.007-06:00

subversion, break up; sudden change, radical change, sweeping organic change; change of state, phase change; quantum leap, quantum jump; clean sweep, coup d'etat, jump, leap, plunge, jerk, start, transilience; explosion; spasm, convulsion, throe, revulsion; storm, earthquake, cataclysm., legerdemain

Change is good.......

(first school pic, 3 years old)

Sweet, sensitive, sad, silly boy.

2010-12-17T03:46:00.001-06:00

He is a sensitive boy.

He loves music, he feels music.

There are some songs he finds have a sad tune, like Twinkle Twinkle Little Star. When that song plays, and if it catches him in the right mood, he tears up.

He LOVES the music on our local news station (the intro/exit music).

He gets so excited when he hears it.

Then at the end of the broadcast local children wave goodbye.

Then suddenly all the music, and all that waving is gone, and it makes Alex tear up.

Sweet, sensitive, sad, silly boy.....

He is awesome.

Smarty Pants

2010-12-15T20:06:00.001-06:00

Alex may not pull the string to bring an object closer to him, he just goes for the object. That doesn't give him many points on certain evaluations, and tests, but like any other three year old he can tell us which picture is the duck or the cow....... Which shape is the heart.......

The rectangle and square........

He is learning his colors........

and knows most of his shapes, he is pretty proud too!This smarty pants knows his stuff, and he can prove it on his ipad!

Show off!

He loves to get out the IPad, he uses it at school all the time. I am having a hard time with it here at home, because Max cannot keep his hands off of it when I am trying to use it with Alex. Since it is Alex's communication device, I find that it is more frustrating for Alex when Max touches it, than it is worth right now, so it isnt out as much as I would like it to be at home. As soon as I can get Max to understand that this is how Alex communicates and he is not to poke at it when Alex is using it, the better........

Wordless Wednesday

2010-12-15T01:20:00.000-06:00

Change takes time

2010-12-13T13:07:00.008-06:00

What is that under my Christmas tree? No, not the ornaments that Max took off the tree, and threw like baseballs. There, that pile of paper.......It is over 200 signatures from 12-14 year old students promising not to use the word retard or retarded.

Last Wednesday I had the wonderful opportunity to speak to over 500 students at the local junior high. It was absolutely amazing sharing my story, and spreading the word, that the R word needs to be eliminated from our speech when defining another human being, when cracking jokes, or when you are upset. The R word needs to go. They got it! The 8th graders took the pledge last year, and it was good to encourage them to keep it up, and wonderful to have over 200 more students pledge to change the way they talk. To change the way their family and friends talk. Change takes time, but the word is spreading. Thank you Turner Junior High!

This years 7th grade class, combined with last years class.......That is a lot of change going on!

Change takes time, but it is happening. Have you made the pledge?

Raindrops on Roses........

2010-12-12T18:56:00.004-06:00

These are a few of my favorite things..........
I love seeing the world through my 6 year olds imagination, I love that Joel cares about how people are feeling, always sneaks up behind me with a hug, and will always find a way to make us laugh! I love spending Sundays with Noah at his wrestling tournaments! Noah I love your competitive spirit, and how much you are turning into a young man!

I love listening to Alex sing, all through the house his voice is carried through the air ducts.......

I love my independent Max.

These are just a few of my favorite things......There are so many more!

Sickies and then some.......

2010-12-10T12:48:00.009-06:00

We have been sick. The weekend after Thanksgiving started with fevers, barking coughs for the three youngest, and an ear infection for Max to boot. That took a good week for everyone to get over. Today my oldest came home from school with the throw ups, and so the cycle begins.....
BUT! In between all the sickies, we have still managed to smile in the bath........

Play with oven mitts, and eat cookies.......

Steal our brothers glasses off their face and hide under the table.

Wish for Santa.....

AND watch a LOT of TV..........

Why do I seem so cheerful you ask? Well, it used to be that anytime someone was sick around the house I would coat them in germ-x and Clorox wipe the entire house every other hour. Ok, well I do still germ-x and Clorox wipe, its my crutch, It satisfies my control issues, but the good news is, is that my Alex is no longer considered fragile, he can have a fever, a cough, just feel lousy, and be ok!!!!! It has been so nice to not constantly worry about him. He is just a regular kid, taken it easy when hes sick. Well, better than regular since I can keep him VERY WELL hydrated with that blessing of g-tube when he is sick..........

Christmas 3 years ago

2010-12-06T20:38:00.000-06:00

One of many!

2010-11-27T01:40:00.000-06:00

Alex had his very first field trip last week! I bundled him up. He blew on a whistle before getting on the bus.

Sat on the bus for the very first time.

Sat in front of his schools Christmas tree at the festival of trees.

And was even a part of the decor!

A many of firsts to come!

Thankful

2010-11-26T09:45:00.008-06:00

For a good father to my boys.

For plenty of food to eat.

For curiosity

For wishes.

So thankful.

Help me spread the love this Christmas!

2010-11-24T01:28:00.000-06:00

Its that time of the year again! I will be heading the the Cardinal Glennon NICU where Alex spent the first 6 weeks of his life, delivering ornaments to the babies who are sick, and who were born much too early. I cant do it without you though! If you are interested in helping, email me at japruitt99@msn.com and I will let you know how you can help!

Click here or here to see visits from the past!

Have a Happy Thanksgiving!

2/2007 Fremd High School R Word Speech - Fan Community Video - Be a part of it!

2010-11-23T02:32:00.000-06:00

Welcome Turner 7th graders!
As you begin learning about genetics, I hope you also begin to love those around you with intellectual differences.
My son Alex is amazing, you will find that out!
I cant think of a better way for you to start reading this blog than with this video.
He says it best! Don't ever forget his message.

2/2007 Fremd High School R Word Speech - Fan Community Video - Be a part of it!

hi dad! (7th grade science teacher)

Benvenuto in Italia

2010-11-21T17:45:00.008-06:00

The poem Welcome to Holland is a pretty way to describe what caring for a child with special needs is like. As pretty goes, it leaves out the ugly side. The surgery, the near death experiences, the medical issues. It leaves out the hard stuff like communication issues, therapy, and doctor visits.

I have always appreciated the Welcome to Holland story, but to be honest, I haven't ever really liked it. At first it was because I didn't want to be in Holland. It came as a shock to hear that my third born had Rubinstein Taybi Syndrome. I didn't want this for him, and lets face it, I didn't want it for me either. So I wrote "crash landed "and in that moment I was satisfied to tread the ocean waters, and never make it to shore, cause I was not going to Holland. The pretty little way it was trying to describe my life was a lie.

Time passed, and I thought that I had grown to love Holland, things were good, I had confidence that I could do this, and there wasn't a thing I didn't love about my Alex. I thought I had taken my place and settled into the roll as a special needs mom.

Time passed some more, and I now realize that the reason I still don't quite feel like I can relate to the Holland story is because I'm not there. I made it to Italy, that is if Italy means having a child, loving that child with every part of my being, advocating for him, teaching him, caring for him, just being mom to him, like I do for all my children.

Alex is no different than my other children. Or he is just as different as Noah is to Joel, as Max is to Noah. All my kids are different because everyone is an individual. Everyone learns different, every one has their medical story, everyone sees the world a little differently than the next.

So, I appreciate the Holland story. I understand that it was written to express the beautiful side of parenting a child who is intellectually different. I cant settle for that though, and I want everyone else to know that when I really look around at the scenery here in my home, I'm in Italy, just like you. We all made it there. We all have the momma bear, the warrior mom fight in us. If you love your kids, you made it to Italy.

I am a better mom, a better person because of Alex. He has taught me things I could have never known without him showing me, however, our plane didn't land in a place reserved for the untypical. We are very much a part of the world. I will do all I can to make sure Alex is seen as a person who contributes. Who loves, and who very much lives in Italy with his family, and the rest of you.

Arrivederci!

-Jessica Pruitt

Slow, snotty, Santa Saturday......

2010-11-20T13:16:00.009-06:00

We always seem to be going and doing. Soccer, wrestling, school.
There is always something. So when a nothing to do Saturday came along, some of us stayed in our pajamas.
All of us have snot.
And two of us got an early Christmas gift!
Max and Alex love their new play gym. It was too big to keep a secret, and there are only a few warm enough days left to play on it, so Santa stopped by early. He is good like that.

Alex loves going down the slide! He is also very good at climbing back up the climb side with just a little help. This is sure to make him stronger!

Hope you all have a slow Saturday too! Maybe without the snot, though I doubt it, and maybe a little Santa too?!

Thank you Grandpa Jones (PaPaw)

2010-11-11T09:21:00.003-06:00

We miss you.

Happy Hour!

2010-11-08T13:40:00.002-06:00

Come on over for drinks!
Or to watch Alex drink that is!
Any consistency be it thin or thick, yes thin can be swallowed!
Flying colors were spotted, this boy got a 100% on his swallow study!!!
Words like normal, and perfect were used.........
I can not tell you what burden has been lifted.
He can drink safely, as much as he is willing. The willing part is a whole other battle, but it wont make him sick!
He has a normal swallow!
From NPO to normal swallow!!!!

Thank you Doctor Miner for your thorough care, and sending us to Cheri!!
Thank you Cheri for seeing potential in Alex, and loving him, and not treating him like just another aspirator who wont ever swallow safely!

All this work, all this time, and we are here, he can safely drink!!!!!!!!!
It is happy hour every hour at our house today!

Flying colors

2010-11-07T19:03:00.004-06:00

Is how I hope how Alex passes his swallow study tomorrow. Flying colors! A+. No aspiration, not even the smallest amount of penetration of the airway.

I'm nervous. In fact, I'm beyond nervous. I'm afraid that some bump will come along and change this smooth sailing the boy and I have been on. Routine, yes, I thrive on it. If someone says this and this has to change in our eating habits, well, I may throw a fit, or at least stomp a foot.

He hasn't had a swallow study since March of 2008 Yes, that picture is from March 2008. Wasn't he scrumptious? Not because he didn't need one, but since he wasn't getting sick I held onto the ignorance is bliss philosophy and hoped all was well.

So, hoping for flying colors. Hoping for improvement, and progress in getting this boy to drink.

I still think ignorance is bliss, but you cant move forward being ignorant.

Monsters in my house.......

2010-10-30T20:51:00.015-05:00

Say Wuh?! He has big googly eyes......

Real big

Dots on his tummy.......

and horns on his head!!!!!

Oh, I know those blue eyes.....Its just my monsters Max.

Load him up in the car with the others......

Trick or treating we go!

HAPPY HALLOWEEN!

Hands on a miracle

2010-10-26T04:41:00.000-05:00

Don't turn down the music!!!
I know, I know, I do it too, but this time let the song play. Its just so true. Ive got my hands on a miracle, believe it or not.......
He was on his way out. He couldn't eat or drink by mouth......

G-tube placed at 4 months.......

Couldn't even eat a piece of birthday cake.......

Starting to taste........

And look at this...... In school, feeding himself!!!!!! See him Cheri (his very first SLP and world renowned)!!!

A big boy on the play ground..........

Very much into his work.........

So proud of himself!

The world is too Alex!

I got my, hands on a miracle!!!!!!!!!!

Special Needs Teen Makes Varsity Squad

2010-10-25T04:11:00.000-05:00

This senior in high school was diagnosed with the same syndrome as Alex. Click on the link and be inspired! Special Needs Teen Makes Varsity Squad

My Max

2010-10-20T01:17:00.000-05:00

Max is lucky. You would think being number 4 would put one at a disadvantage for one on one time with mom. We have the entire morning together. We play outside, go to the store, to the bank, we go on walks, read books, look at pictures, and eat a banana snack together.

Max must keep moving, hates to sit in car seats, shopping carts, and sometimes even the stroller for more than 10 minutes. He is an explorer. Is obsessed with cars, and the big yellow bus at Alex's school. He doesn't enjoy cutting teeth, and lets everyone around him know this. He loves fruit, oatmeal, and spaghetti.

His happiest time is in the evening when his older brothers give him attention.

He always wants to be outside.

Its going to be a long winter with my Max.

On his own.....

2010-10-18T13:05:00.005-05:00

Alex gets woken up at 6:50, I give him his water and meds, and this gives us 30 minutes until breakfast, the time Alex needs to digest his meds and water so he wont throw up breakfast. He eats sharply at 7:20, over right at 7:30 so at 8:20 he can get another round of water before school. Everything is timed perfectly so the school has nothing to do with his button/feeding tube. That's the way I want it. This way he can do nothing but learn, and eat, and drink on his own. He is becoming more and more independent. Here is some art work that he has done on his own, or just a little help.

Alex loves school, and I know they love Alex.

Feeding update

2010-10-12T13:32:00.003-05:00

We are SUPER busy these days with three boys in school. However, I couldn't be more happy with the progress Alex is making. He is using PECS at school, and choosing m&ms to eat (of course), he is using a special crooked spoon at school, and feeding himself! He is getting better at textures (no more pureed banana for him). He is feeding himself raisins, cereal and all sorts of things that he throws on the floor here at home. Drinking is still our biggest challenge, he has 0 desire to drink. But this is a food update, and I can finally see a light at the end of the tunnel:) From NPO to using a spoon!

p.s. I promise to update my blog more, I think.......

So much to say

2010-09-23T20:23:00.004-05:00

Alex has an IPad! We are so excited to begin this journey with him. We have his teacher, and ST on board to use it along with sign, and PECS.

You will be heard Alex!

The babies err, baby.

2010-09-20T03:52:00.001-05:00

There is only one baby in this house.
His name is Max, but this post isn't about him, its about his big brother who I used to put into the same category.
I call Noah and Joel "the bigs" and Alex and Max "the Little's", and sometimes "the babies". It was just by default.
Since school has started for Alex I am very much aware that Max is the only baby in this house. I love it, and so does Max.
Serious!
Look at this big boy! Since school has started Alex has started climbing and sitting on anything but the floor.

SOOOOO HANDSOME!

Here is Alex in OT at school...

and even making friends....melt my heart.
However, when he brought home to his momma his very FIRST piece of art work tears came out of my eyes, and I immediately hung it up. I have a thing for my kids art work, and this one is pretty special!

I know I am being repetitive when I say this,but it doesn't seem so long ago I was bedside with Alex and he was fighting to live. I remember it so clearly, and I wont forget how hard that time was.

Today Alex walked into his classroom holding his teachers hand, and on the other side holding a classmates hand......I wanted to shout out to everyone "he almost didn't make it, look at him go!" Watching him walk hand in hand with a classmate, a peer, has melted my heart today. So instead of causing a scene at his school, Ill shout it out here, again.....HE ALMOST DIDN'T MAKE IT! lOOK AT HIM GO!

Mallorie

2010-09-19T09:23:00.002-05:00

Our little tea pot

Beautiful little girl, you touched and blessed so many.

He climbs!!!

2010-09-16T11:45:00.003-05:00

Playin the blues......

2010-09-14T05:32:00.000-05:00

Music=Love for this boy.......

Maxton Jones Pruitt

2010-09-13T05:43:00.022-05:00

It has been one year since I looked into your eyes for the first time....... now you are walking.....

You say mum mum mum, Da (daddy) N(noah), Ba (ball), Dn (dance), you sign more, all done, tickle, and milk for bottle......

you LOVE to laugh.

You love your brothers all three......

You complete our family......

Today we celebrate you!

Happy birthday to my littlest man! We love you So BiG MaX!

Alex ROCKS school!

2010-09-10T13:37:00.011-05:00

I love being able to communicate back and forth with Alex's teacher, and keep Alex included in the communication.

I could not get this picture to turn the right way.....However, it is SO important to note that on day 3 of school Alex would walk to the sink (holding someones hand) and reach for the water to wash....He has always been incredibly scared of sinks. Not. any. more.

Here is Alex in speech popping bubbles and laughing.

There are no more tears when Alex goes to school. I do believe he complains with some tears during school, or physical therapy, but I am confident he isn't sad or scared, he just wants to do something else. His teacher is AMAZING! Helping him transition from task to task. I am nothing but thrilled with this first week of school. Now I get to watch the boy fly!

Isn't he amazing!