WINNER- My Baby Clothes Boutique

And the winner per Random.org

Winner is....(drum roll please)

Katie Gvora said...

I liked Baby Clothes Boutique on facebook

Thursday, 12 May, 2011

Katie- Please contact me by May 24th 12:00 noon.  If I do not here from Katie by then, I will do random.org again to pick a new winner.

Thanks Everyone for entering~

WE GOT IT!

Well we camped out at the front door for a little over a week (actually a shorter period of time than I expected!)

Then around 4 p.m. on Thursday Mr. Fed Ex guy came and knocked on our door!  Talk about jumping for joy.  I knew immediately what it was - Daniel just saw a box and figured it was for him because that's the way it usually goes so he was excited either way!

But then when I opened it up and started pulling it out, his eyes got real big!  It wasn't in our house for more than 15 minutes before it was unlocked from shipping mode and calibrated to his eyes.  Add on two more minutes for me getting it hooked up the the table top/floor mount and Daniel was "talking" up a storm!  I damn near cried.  

After a very very very log process (over a year) and quite a few sleepless nights by myself AND his speech therapist (Ms. Pat), we got what Daniel needed--correction, we got what he deserved, what he rightfully should have, what he PROVED he could do--he got his voice!

I have never met a company that was so very willing to help us each step of the way as PRC is.  From the Sales Rep for Michigan - Gabe, who is willing to bend over backwards to help with programming, and getting things sets up, to training.  Yes I KNOW its his job and you might say he is just doing his job, but its far more than that in my eyes - he CARES - he talks to Daniel, shakes his hand every time he sees him, asks him how he's doing.  He just ROCKS.  He has dropped stuff off at our house, and he has even come out to Grand Rapids when we were there.  He has hooked us up with other people who can help us out along the way....just above what a sales rep has to do.

Then the group at the office of PRC in Ohio - from financing, help desk,  upgrades to shipping & receiving.  I have not met anyone on the phone or email for that matter who has not been more than helpful.  Through the whole process that Daniel's device was there getting upgraded they kept me up to date through email, sending me the tracking information when it shipped!  

I actually spoke last week with a woman who was very disappointed because they purchased an AAC device for their daughter that has the eye gaze technology with DynaVox.  Now mind you I am not badmouthing DynaVox, I have seen many children use it and it works wonderfully for them.  And I am happy that it does.  What is good for one child does not mean its good for another child.  All I am saying is make sure to check all your avenues.  The mom said she tested out the PRC ECO2 w/eye point and had success but because the school district she is in had more experience with the DynaVox they went that route figuring if she could use the eye gaze with one it would be the same with the other company.  Unfortunately she found out after the fact, the camera on the DynaVox that reads the pupil is not as big and strong as the ECO2.  While the DynaVox is good for a child with good head control, it is not great for a child who tilts the head or has the spastic movement.  The camera in the DynaVox has to have two pupils to read and they have to pretty straight and level, not so with the ECO2. It can read just one pupil, your head can be tilted or pretty much upside down for that matter!

So sadly to say the mom is trying to sell her device to get something that will work for her kiddo.  The reason I am telling you all this...is in hopes that you realize before its too late and a mistake is made.  Do your research, test EVERYTHING out, and make sure you are getting what your child needs.  We originally went with the ECO a couple years ago because the touch sensitivity of the screen was much lighter for Daniel's touch, and the overall screen area was larger so he could have more area to select with larger buttons (8 cells to the screen).  We are now working on 45 cells with the EyePoint, I don't think it will be long before we are moved up to more cells.  But for now, I am happy to have expanded his choices in conversation by 37 cells!

He is already jabbering all the time, since we've gotten it he tells me what he wants to watch on TV, what he wants to play with, tells me in the car that I am driving to slow, that there is a red light, the colors of the trucks and cars that are going by - and that the big semi that drove by was "stinky".  He has greeted people that come into the house - his hairdresser that comes over to cut his hair - and he even asked her if she would cut his hair.  She was tickled pink,AND when she answered him back, he was equally as excited.  He has also said hello to Aunt Ann when she came over.  He was able to Skype with his sister Brittany who is at college.  It is all very wonderful and emotional.  I know - silly to get emotional over Daniel sitting in the backseat telling me the truck is stinky - but yep, that's me;  the weeping lady in the car driving!  And he is as much of a backseat driver as my daughters!

There isn't anymore guessing on what he is saying...

I don't think I can program pages fast enough for him to tell me all the things he has been trying to tell us for the past 5 years!

UNIVERSAL EXERCISE UNIT

I am so excited.  I found out recently that the facility where Daniel gets his PT/OT is getting the "Universal Exercise Unit" also known as the "cage"or "spider cage"

I have been wanting to try this out with Daniel for so long but the cost of doing it was out of our reach at the time.  It involved having to go to a different therapist and facility and I just wasn't willing to do that.  So imagine my excitement when I was told we'd be able to get it with the therapist we love!!

If you aren't familiar with this type of therapy, check it out here.  

How cool is that??  I CANNOT WAIT!!

Hopefully they have it soon....and hopefully Daniel does well with it.  I am sure pictures are to follow- good or bad! 

check here for more photos and information of how it works.

Special Fathers

I am sure many of you that stop by hear have read this recently as it is going around our "groups". When I find things that hit close to home, I like to post them on here so years from now I can look back. I also look at them when I have having one of those hard days, weeks, months.... so take a minute to check it out.

____________________________________________________________
Special Fathers

By Patrick Kane

While I may not know many of you personally, I know your daily routines; your daily dreams, your daily fears. In a crowd of hundreds, I can spot you in an instant; your lines and wrinkles caused from years of worry and stress crammed into weeks and months of your new life you didn’t ask for and never saw coming. You have dealt with this stress and become a stronger, better father because of it. You have learned the true definition of the words “advocate”, “father” and “coach”. Yes, you are Fathers of special needs children, and you are my Brothers.

Each of us had the same hopes, dreams and plans for our children. And, each of us has had to deal with the instantaneous reality that our child will never know life in the same way we dreamt for them. We have had to accept the realization that we may never see them walk, hear their voice or share their thoughts. Some of us know that we will never see our children go to college, walk down the aisle or become adults. And, we’ve done it all while trying to find the small things that give us hope and laughter and get us through one more day.

We’ve changed our work schedules, taken new positions, asked for demotions or taken new jobs, all so we can be there for our child that can’t go to normal daycare or have a neighborhood babysitter. We’ve dealt with the disapproving looks and judgment of other “men” who put work before family and don’t understand the decisions we make, and don’t care to.

We’ve gone days on just hours of sleep because our child had fevers, seizures, feeding tube disorders, infections or reactions to a “new” medicine. We’ve had to administer the shots ourselves, hold them down for leg brace fittings and comfort their screams of confusion and pain. We’ve bargained with God to give us the pain and illness so our child wouldn’t have to feel it. We’ve watched them go through countless procedures from EEG’s to Chemotherapy. We’ve taken them across the country to see the specialist that we believed would have “the” answer.

We carry them when there are no handicapped entrances. We hold them during movies, meals and church. We carry them to bed each night wondering how we ever managed the day. We kill ourselves at the gym hoping that we will stay ahead of father time so we will always be able to carry them when needed . . . wondering who will do it when we are no longer able.

We can meet with doctors, school boards and politicians and equally understand the medical terms, IEP schedules and new legislation that will better enable our children. We are adaptive chameleons who can fight battles on numerous fronts at the same time, and win each battle because for these children, failure is not an option.

We’re no longer little league coaches or ballet dads, we have become a coach on a new front: The art of coaching them how to lift their head, how to swallow, how to roll over, and how to crawl. We have become the physical therapist at home, creating boot camps in our living rooms, basements and back yards. We push our children beyond what others expect of them. We still push for them to play. We still push for them to be productive and self-sufficient. We still push for them to touch sand, grass or water without screaming. We do these things because we know the fabric from which they are cut . . . we’ve learned they got it from us.

We’ve learned how to build adaptive toys that are overpriced and under produced. We’ve scoured the internet for plans on how to build “tiny rooms” for the visually impaired. We’ve learned how to build shade canopies to fit their adaptive chairs out of John Deere parts so we can take them to the park with the other kids. We’ve learned that Mylar balloons are not just toys to be given on birthdays and that emergency blankets are not just for emergencies, but adaptive equipment that can be used for sensory therapy, vision therapy and fine motor skills.

We’ve learned to deal with the curious looks from other parents, or the child who asks innocently what is wrong with our child. We’ve learned to confront those who like to pretend our child is not present or that we do not exist. We’ve learned to stand up and speak for our children when they are discriminated against. And, yes, we’ve learned that to us sometimes it is better to pretend that those people do not exist.

Some of us make the lone trip to the cemetery to visit the child who could no longer carry on the fight. While there, we talk with them and tell them about our days. We continue asking in our prayers that they can now run and play, chasing butterflies, fishing with grandparents and catching balls. And, we do it all without shedding a tear…at least not that others ever see.

We know that by placing a hand on our brother’s shoulder, we are comforting him more than words could ever do. We don’t need to discuss our problems to understand what each of us feels, but we are always here for each other should the time arise.

We aren’t just fathers; we are fathers of children with special needs. We are better people for having these special kids in our lives. We are better fathers because of kids like these. I, for one, am proud to have you as my brothers, and proud to have a special needs child.

 ___________________________________________________

(No worries, I got permission before I published this in its entirety, so I am not breaking any rules-----well at least any that I know of!)

New Toy - ANYONE can use - DaGeDar

As we all know, I am ALWAYS looking for toys that Daniel is able to play with, so you know where this is going to be leading....

Although Daniel may not be able to use it the way it was meant, I always look at toys and see how they can be adapted for the Special Needs kiddos. This one looks like it could be, mind you he would probably still need minimal help, but he could play along with the other kids. It seems like it would be cool, and for those of you who have to buy the adaptive toys from the speciality stores you know that those cost an arm and a leg!

When a toy comes out that isn't labeled for SN, but is able to be used....I'm always checking it out.

Of course the makers probably weren't thinking about the therapeutic benefits when they created it,  I am the mom am!  Just off the top of my head - hand/eye coordination, eye tracking as the ball goes down the track, grasp and releasing...I'm sure you guys can think of other things too!  Then how therapeutic is it to just be able to play along side the other kids?!

From what I read on the site, there will be many different battle balls to collect, each one having "special powers".  Check out the commercial - see the toy in action.

 Now, just the wait until its released! ;)

Ride'em Cowboy!

Three weeks ago Daniel started therapeutic riding at OATS.

When I told people, some of them said "oh he'll love it", others said I was nuts.  He had sensory issues and tend to freak out on things - well crap wouldn't you too if a huge animal was coming at you?  

WEEK ONE:  BEFORE WE GOT ON THE HORSE - LIFE WAS GOOD

There was some screaming and crying when it was his time to get on the horse.  This is where I made him tough it out.  I told him he'd be fine, although I don't think he believed me.  He made it through about 40 minutes of riding, if you can call it that!  Most of the time he was doing this

 and this...

 I finally figured out what he was doing...he wasn't tired, he was looking down and under his arm to see the horses that were following behind him.  He wanted to make sure they weren't coming after him.  Once I told the people walking with him, they moved him to the back of the line of horses and he sat up..

 The posture wasn't great ( Sorry to all his therapists that work so hard on proper posture!)  We were just happy he was not screaming at this point.  As you can see we started to get little smiles

WEEK TWO:

  He was excited all day when I asked him if he was going to ride his horse again.  Until we actually pulled up and went into the stables.  Then he started freaking, but as soon as they put him on the horse...not a peep out of him!  He was all smiles and lasted the whole session. Boy it was a little rainy and chilly.

WEEK THREE:  All week anytime Daniel saw a horse or we made mention of a horse he was all smiles and got excited.  Wednesday morning came and I asked if he knew what happens on that day, he smiled and showed excitement when I told him.  Week three, I am happy to say there were no tears at all, he was excited as can be, but I think he was still a little nervous because I could feel his legs shaking before he got on the horse. But he WANTED to get on.

 AND HE LOVES IT!!!

 Here he is being cool and NOT holding on - giving mom a heart attack!

  This is AFTER he stopped being upset because he had to GET OFF the horse.  He kept whimpering and saying "on - on-on". Do you think he likes it??

So we drove by and said goodbye to the horses.  Until next week.....and I am sure he is counting down the days until Wednesday.

I love when he works through things that he is afraid of.  I am so proud of him, it seriously brings tears to my eyes.

1) because he is doing it and liking it.

2)cause he can do something that is fun and be just like any other little boy. 

3) Its therapy and he doesn't even know it!!! 

4)he worked it out, and pushed through being afraid.

So, so very proud

My Baby Clothes Boutique Review & Giveaway-CLOSED

I  have to say, I love Daniel to death.  He is an awesome little boy, but when it comes to finding cute clothes for him, I've just about given up.  I'm always looking for things that don't make him look like a baby, but also that are age appropriate. If you ask his sisters, I tend to dress him to young for his age.

So imagine my excitement when I was asked to do a review for "My Baby Clothes Boutique". 

 Don't let the name mislead you, they have items for the bigger kiddos too! Boys and Girls!

But I must say I kept getting side tracked with the little girl things. (We're going to be having little girl in the family soon, so I was imagining all the things we could get her. NO its not me, but my daughter is!).

They have the cutest little tutus!  Oh then look at the headbands.  Oh my gosh all the different baby clothes, and what awesome little things to have your kiddos wear for their first years pictures! Well when I got to the hats, lets just say I KNEW right away what I wanted to order!

They shipped it out and we got it uber fast!  The customer service is impeccable. When I opened it up, I just about melted - it is the cutest darn thing I have ever seen.  For forget that I don't have a little girl to make into a darling diva, I've got a little boy that I can make into my own Dapper Dan!

HOW STINKIN' CUTE is this fedora??  He wants to wear it EVERYWHERE even if it doesn't match his outfit.  Someone is always complimenting us on it and asking where we got it!

For all of you out there who have been searching for that just right outfit for your little Dapper Dan or Darling Diva, search no more!  

Would you like to win $25 FREE to purchase any item or items in their cute little clothing shop? There is so much I want  .  If you'd like to win, and I know you do, just follow the instructions below.

Mandatory Entry: Visit My Baby Clothes Boutique and tell me what you might buy if you won.
Please make sure if your email address is not visible in your blogger profile you leave one in your initial entry! 











Extra Entries - More ways to win! (leave a separate comment on this post for each one you do):

• Follow MyBabyClothes on twitter.
• Like My Baby Clothes Boutique on Facebook.
• Sign up for the My Baby Clothes Boutique newsletter 
• Follow their blog
• Tweet about this giveaway including  @mspranger in your tweet (leave a link of your tweet) can be done once a day.

       #win a $25 Gift Certificate to @MyBabyClothes from @mspranger

          Ends 5/20 

• Follow Better Than Normal
• Subscribe to Better Than Normal by automatic updates
• Add Daniel's button to your blog (leave me a link were I can find it)
• Blog about it and link back to Better Than Normal

This giveaway will end on May 20, 2011 at 11:59 PM EST. The winner will be drawn via random.org. The winner will be notified via email and will have 48 hours to respond. Open to US residents only.

*All Better Than Normal reviews are based on my personal opinions, and are unbiased. I do not receive monetary compensation for my reviews, though I do get free products to test out, and express my opinions on. They are 100% my own, and 100% truthful!*