Thursday, December 12, 2013

Sensory Friendly Christmas Party

Earlier this week we got to go to a Sensory Friendly Christmas Party for kids with Sensory issues and/or health issues.   It was a lot of fun.  It was held at a indoor playground that is local.  We had never been there before.  So it was nice to be able to check it out.  

First thing they did was get in the (short) line for pictures with Santa.   Daddy took them in and I sat with all our jackets and stuff.  They posted the pictures on a website - which were up just yesterday :)

Kaedyn is usually super scared of Santa so its nice seeing him in the picture smiling - even if he is sitting as far away as he can.  LOL...  they all came out with a stuffed animal, a candy cane and a little back with an ornament in it...
Although some switching happened on the way home.  Noah ended up with the snowman - named Frosty.  Nathan ended up with the elf - named Pizza... and Kaedyn kept his reindeer named... well, it was named Window that night... he has changed it since then.

They had a maze bouncy house, a huge slide, and a regular bouncy house.  They also had a ball court, and some other sections that the kids had no interest in what so ever since they really (especially Kaedyn) just liked the slide.   Nathan went through the maze a few times and in the bouncy house a few times but really him and Kaedyn just kept going up the slide and coming down.   Noah got overwhelmed at one point and just went and sat for awhile.  He has issues with his legs so it was to be expected with a bunch of jumping.




And when we came in we were given envelopes with a bunch of stuff in there.  Each kid got some Seahawks tattoos, and a $10 gift card to Target.   Which they decided to use on pizza and pop for dinner that night.  Silly kids.... they just wanted pizza.

Nathan ended up with the candy ornament, Noah with the baseball and Kaedyn with the green candy cane :)
It was a lot of fun and definitely something we want to do again next year.  We left about twenty minutes early because Noah was overwhelmed and Nathan was getting ready to melt down.  Then we went to Target and got their pizza and soda and went home and ate and had fun.  The kids put their ornaments on the trees right away :)  

Thanks for the great night!!!

Monday, December 2, 2013

Oh Happy Day .......

So you saw in the last post the pictures of the boys (playing their leap pads) with the lights around their bed.  We did this for two reasons ..... 1:  Nathan loooooooooves lights.   It helps sooth him.   2:  Kaedyn is afraid of everything and we were hoping it would help him stay in his bed.  Here is the pic again ....

So we finally got our tree up yesterday.   It's just a tiny cheap tree...  that doesn't hold our ornaments well anymore (we need a bigger tree, we really do.) ..

The kittens managed to knock it over yesterday ...... thats what the kids say anyway ... .but do you see that flippy little autistic kid there....  yeah, part of me thinks Nathan did it....

Anyway ..... I just wanted to share the pictures of the boys infront of the tree and our tree here...

Dear Leap Frog ........... I'm NOT happy ... *Update*

.(If you read my regular blog, this is shared on there too) 

This morning I called Leap Frog Customer Service.  Kaedyn, who LOVES playing the Jewel Train application on his Leap Pad was complaining it was no longer there.  So I looked, and sure enough it wasn't on the device OR the software I could load up off my account on the computer.

So riddle me this......... why?

 Playing their Leap Pads

I told him I would call them this morning and get it fixed.  So I did.  I called ...... and the call was completely frustrating.......  left me completely unsatisfied....  and an unhappy customer!   So I posed a letter to them and promptly sent it to the customer service email they have listed.

Our devices ......

I warn you – I am one very UNHAPPY Momma right now.  But I'm not one of those crazy yelling emailers.  I just want to bring to your attention why I am unhappy in hopes that MAYBE you can still help me or at the very least, bring to your attention how wrong this is. 

First off, I want to say that we generally love your products.   We managed to scrap together two Christmases ago to buy TWO Leap Pads (ones) ….  We got the warranty on both – which we were very thankful we did, because we ended up having to return our Leap Pad Ones and used the refunded money to get Leap Pad Twos.  We have had ZERO problems with the Leap Pad Twos.  They lovingly call them their “iPads” … it’s cute.  

My boys love to play on the same game – at the same time.  So buying software off the site has been great for us, as an option – because we can share that between both devices.  However we do have increased issues with the game cartridges.  While I have your attention, I would love to suggest that there be a way to register the cartridges you BUY on the site, so that you can have them as downloaded software if wanted, or needed.  Like when my Autistic son sucks on the cartridge instead of putting it in the machine, or he spills his drink all over it, OR they lose it all together in the depths of the couch abyss.  But that’s just a suggestion. 
So onto why I am one UNHAPPY Momma.   I have four kids all together.  Two of which have complicated medical needs.  I have a husband who lost the ability to walk in 2011 and hasn’t been able to get a job since.  Now that he can walk again, they discovered he has some rather major issues with his spine.  My days are filled with driving everyone around, various medical appointments, a lot are one to two hours away.  The little bit of money we have has to stretch far and wide.  I have to make it work. 

So my five year old – who is a math wiz! – was asking me why his train game wasn’t on his Leap Pad anymore….and so I look, and sure enough, it’s not there.  He’s talking about Jewel Train 1.   And while I’m looking at our software, I realize that the Dinosaur e-book we had gotten for my autistic son (because he LOVES dinosaurs) is also not showing up. 

These were both the free applications we got when we initially got the Leap Pads.
So I spent some of the little bit of money we had to get them a couple more things – including Jewel Train 2 and some ebooks to tide them over until I could call you today.  (It being Monday – December 2nd, 2013 ….. after the long Thanksgiving weekend). 

So I’m on the phone and I’m explaining to the guy what is going on.  After being put on hold twice for long periods of time, he comes back and assures me they are on the account.  So I plug in one of the Leap Pads and I am looking at it, and I’m telling him, it’s not there.  So he puts me on hold a third time, and comes back and tells me the following………

I cannot access them anymore because they were free applications and can’t be shared. 
Excuse me?  

We loaded up BOTH applications on the Leap Pad Ones ….  And I am pretty sure they were on the Leap Pad Twos when we first got them because I know he was playing the Train Game on his a couple months ago.  But I recently updated everything the other day ….. we had gotten a couple of game application cards to receive software off the site on Black Friday and I was loading the stuff we bought with that on the Leap Pads ….. and so both Leap Pads had to update. 

It seems to have disappeared from that point.   That’s when he realized that the train game was no longer on there (Jewel Train 1). 

So imagine my surprise when I was told that because we got the two items as FREE applications when we first got the original devices, they were no longer available to us. 

This is wrong on so many levels.   I was told I have to purchase these applications in order to be able to use them again.  Well, I don’t have money to purchase them again. I should have used the money I did on other things, like gas or food as it was.  But I decided to splurge on them a little and get them a few new things for them to play. 

My kids love their Leap Pads, and it really really saddens me that this is the type of customer service we got.  The only thing I was told was “I’m sorry for the inconvenience.”   He said sorry about ten times during the call.  For the waits while I was on hold, and when I became irritated at the line he was giving me about them not being available to us anymore. 

Basically he’s saying ….  the FREE applications are only free for a while, don’t expect to always have them.  He said they were like “trial” applications – which wasn’t true.  They were the full applications as far as I knew.  He didn’t use the word trial, I think it was starter.   Both these applications were on their devices until the update I made on them just a few days ago.  I called your company to solve a problem and was left hanging with “sorry for the inconvenience,” which – let’s face it – is just a slap in the face. 

So now I get to explain to my child that even though Mommy said she would have it fixed today, she can’t fix it because your company said no.   Then I get to deal with his disappointment. 

I am writing this email in hopes someone who knows what they are doing can help me – just because it was free initially doesn’t mean you can just take it away.  That’s rude, and wrong, in my opinion.  I want to bring to your attention that this isn’t a very good customer service policy.   AND I want to tell you that at 7:30 am this morning, I would have recommended your product to anyone.   Now I am going to publish my experience, and this letter on my blog.  By 8:30am this morning, I’m not sure I would recommend your products anymore.  Frankly, those who cannot make a costumer happy by figuring out a way to correct a situation where they have the applications that they already had, even if they were FREE …  isn’t the type of customer service I want to deal with.   And I’m sure other special needs families would feel the same way. 
In case you would like to look at our account, it’s under the email address (email addy here).  If you are going to reply to me, please direct it at (email addy here) since I no longer use my aol email. 

In kind regards,

(my name)

So I thought I would just add the update on this entry.   I did hear back from Leapfrog and it did NOT make me a satisfied customer in the least ....

The Jewel Train that you mentioned on your first e-mail is a starter game, not purchased and these are not transferrable to another handheld.

If the app you are looking for was purchased and is not yet installed on a maximum of 3 apps, this should show under the On This LeapPad tab but if it was a starter game or included, it will not show on the On This LeapPad Tab.

Jewel Train (virtual) Starter Available 10/30/11 18081E00010B060A88A4 

The status of the Jewel Train is starter which means that it was not purchased. If you can provide us the order # or any proof that you purchased this separately, we will be glad to double check this for you. 

Should you have further queries, please let us know.

So in other words....... the fact that we had to replace my son's leap frog -we no longer the the "starter addition" of the Jewel Train EVEN THOUGH it was on the same device I was trying to put it on, just a mont or two before.  It wasn't until the UPDATE that the Leapfrog went through that seemed to make it disappear.  Whatever.  It's a good thing my kids love the product ...  or they would lose a customer for bad customer support.

(Rolls Eyes)

Thursday, November 28, 2013

Happy Thanksgiving

.Happy Thanksgiving from our Home to YOURS :)

Wednesday, November 27, 2013


 click here --->   REINDEER CAM  <---- click here 
(or on the above graphic) 

So one of my family members tagged me in this when she shared it.......   it's a 24/7 Live Webcam broadcast ....  but at certain times of the day, Santa will come out and feed the reindeer himself!  
This is super fun! Watch Santa feed the reindeer LIVE!! 

Mon-Fri at 11am, 6pm, & 9pm EST. (which is 8am, 3pm, & 6pm for use West Coasters) Weekends at 6pm only (3pm PST). Let your friends know about this, it's fun for kids of all ages!

When does Santa feed the reindeer?

Santa and friends will appear at the following times beginning November 1st:
Monday through Friday:
PST (Pacific) – 8AM, 3PM & 6PM
MST (Mountain) – 9AM, 4PM & 7PM
CST (Central) – 10AM, 5PM & 8PM
EST (Eastern) – 11AM, 6PM & 9PM
GMT UTC – 4PM, 11PM, 2AM
Saturday and Sunday:
PST (Pacific) – 3PM
MST (Mountain) – 4PM
CST (Central) – 5PM
EST (Eastern) – 6PM
You can even write Santa a letter and get on the NICE LIST that scrolls!!  (You can also get on the NICE LIST two other ways (on is by donations!), check out the FAQ's to find out how and the address to send the letters to!)

Here are some of the pictures of the kids watching Santa feeding the reindeer ....

I have an alarm set on my phone for the latest time because the kids are home from school then.

Friday, November 22, 2013

Amazing Video of Katy Perry and Jodi DiPiazza from 2012

This was floating around Facebook last year around this time, and I got chills from it then.  Even now, a year later, it still gives me chills.

This is the amazing video of Katy Perry and young Jodi DiPiazza, an adorable 11-year-old girl who has autism.  They were singing during an Autism Fundraiser that Comedy Central puts on called The Night Of Too Many Stars ...  this was from last year.  

It is absolutely amazing and will continue to be so.

You can see the article HERE from last year...

Amazing Video of Ward Miles - Premature through his first year...


I saw this video floating around on facebook.   I just couldn't not share it.  So of course I have to share it on here too.  With the fact that it is Premature Awareness Month ....  it's a touching tribute.

I have to say, that ...  the first scene, where she's holding him for the first time and doing Kangaroo Care ... I started to cry because, frankly - you never forget that feeling of holding your child for the first time, after days of their birth and the feelings that overwhelm you.  All those tubes and cords, and all of that makes it equally overwhelming because you have to balance all of it.

Now Noah was off the vent the first time I got to hold him, he had just actually come off the vent.  I had him on Friday afternoon (3:45pm), I didn't get to actually SEE him for the first time until after 9pm Friday night, and I didn't get to hold him - for the first time, until Sunday morning just after he came off the vent and was completely breathing on his own.  Regardless, he had IVs and cords and everything else.  Same with Nathan, he was never on the vent.  Luckily they had both been given the steroids to help their lungs to develop and it worked. But those feelings NEVER go away ....  

And I just sat there watching, watching Mom smiling, and trying to be strong for the camera, and I kept thinking - how can she not be bawling her eyes out right now..... and just after I thought that, she broke, and I thought........ there it is.

There it is....  

If you want to read more about amazing little miracle Ward, and his family - you can click HERE ... and read the article off of Yahoo.

Sunday, November 17, 2013

World Prematurity Awareness Day ...


Today is World Prematurity Day. November is Prematurity Awareness Month.

I am the mom to two preemies. I have had two different and unique experiences. I just shared both Noah's story and Nathan's story on my Facebook ... trust me, they are edited short versions, but you get the jist.

Watching these boys grow up - through all their struggles .. not just from prematurity but from their medical issues that have nothing to do with them being early .... it has made me appreciate and view things so differently.

I have to say - that having a premature baby, and being in the NICU - is something ONLY ANOTHER PARENT who has been through it can truly understand.

So if you know someone who has a baby too soon, be a support. Do whatever you can do to help them out. Don't stress them out because - trust me - being there with your child is stressful enough. You feel - a lot of the time - like it's not even your child.

Imagine.... you have to ask permission to touch your child. You have to ask permission or be supervised to do a diaper change. Your baby is fed through a tube instead of at the breast or with a bottle. You are told you cannot hold your baby because their fragile little bodies can't handle it. When you do hold your child, there are so many tubes and wires connected to them then Frankenstein's monster himself. You are there alone. No one visits, sometimes due to NICU rules no one can. When you do get visitors, it's like a holiday.... actual people you know! You make friends with the nurses, and you miss them when you leave... it's like Stockholm syndrome. And you are grateful beyond measure to what they have done for your child and for you.

Having a preemie is hard.

So to all the parents out there who have had a preemie, {{HUGS}}. We are an elite group.

World Prematurity Day - NATHAN'S STORY

18 weeks pregnant on the day Dennis and I got married 
In 2006 I was pregnant with Nathan. We were told - via amnio - that Nathan was genetically healthy - as far as they could tell. However, his pregnancy mimicked Noah's greatly and it gave me great pause. I felt as if something was wrong, but there was no proof. At our 20 week ultrasound we found out that Nathan had a two vessel cord (normally there are three vessels ... two going in, one going out ... Nathan's case there was one going in and one going out. So Nathan was getting half the nutrients any other baby would.) ... So in addition to that - they found out that I had Fibroid tumors in my uterus, pretty big ones from what I understood, which also restricted things, and Nathan had a "cyst in his brain" ....
Valentines Day 2007

But there was NO WAY to know what the future held.

To be safe, I was given steroid shots around 33 weeks. At that point, things were taken week by week, but they didn't want to let me go past 36 weeks.

We hit 35 weeks, Noah developed an ear infection. So he went on some antibiotics. However, over that weekend - he started to get really sick. He was complaining that his right side hurt, he was feverish, vomiting - we took him into the local ER and got brushed off "It's just a virus" ... but in my gut, I felt it was more. The next day, he actually seemed to get a little better, so I thought - well, maybe I'm wrong. But the following morning, the day I needed to go to the hospital - the same hospital Noah was born at, 2 hours away - where Nathan would also be born.... for an appointment to determine when Nathan was coming, Noah was so sick that I was torn about even going to the appointment. He had a 104 temp, he was lethargic, vomiting, and I couldn't leave him. So Dennis and I packed him up, took him the 2 hours away to the hospital - to have him seen in urgent care there.

What does that have to do with anything? Well ... Noah was so sick he was hospitalized. Noah almost died that week. I was told if we hadn't gotten him in - it wouldn't have been long. Regardless, I had to go from Noah's hospital room, down a floor, on April 19th 2007, to give birth to Nathan.

Thankfully - Noah got better... 

It was a planned c-section - wasn't life or death - like it was with Noah. But it was time. And I had a very very hard time because of the Noah's birth was traumatizing for me. I told Dennis, I made him promise, NOT to leave the baby.

During Nathan's birth - they did pause a moment so we could see him, Dennis was taken to the room off to the side of the OR where they took the babies prior to taking them into the NICU...

He was 3lbs 4oz and 15 3/4 inches long. He was born at 36 weeks. He was put in the EXACT same spot in the NICU that Noah had been in.... and the nurses kept saying "You are a pro, you take care of him, you know how to do it..." LOL... since it was Dennis' first experience in the NICU, I let him do a lot of the firsts when it came to Nathan. I walked him through a lot, and told him how to do stuff and what to expect. I hope that my experience with Noah helped me make his experience with Nathan less traumatizing as a parent.

Later we learned that Nathan's lack of growth is due to him having a rare type of Primordial Dwarfism (primordial meaning he's proportionate, and dwarfism meaning he is expected to grow under a certain height) ... called Russell Silver Syndrome. He was born with a cleft palate that was repaired May 2012, among a lot of other things. He also has Autism. I hate to say he's non-verbal because he tries so hard.

He is 6 years old, the size of a 2 or 3 year old, he is 27-28 lbs and about 33-34 inches. He is my hero!

World Prematurity Day - NOAH'S STORY

In 2001 we learned that Noah Alexander would be born with an extremely rare genetic disorder called Mosaic Trisomy 16. We were told - he wouldn't live. Period. I knew better, I had done my research and learned there were survivors. If he had been full Trisomy 16, there was no hope, but with that word "Mosaic" infront of it, gave hope. The third chromosome wasn't in every cell. I was told - though - there was no hope.
31-32 weeks pregnant

We did know, for sure, that most likely he would be born early. Many of the babies who made it 9 months were actually stillborn. In Noah's case, it seemed it would be best if he was born early. I didn't expect what did happen.

At 32 weeks - Noah started to have heart deceleration, I developed Eclampsia, and I was having contractions. I was hospitalized.

At 33 weeks, I was rushed to a hospital with a high level NICU. My OB sent us off saying "you'll probably deliver tomorrow" (the date would have been 2-2-02 for his birth) ... but when I got to the hospital on the 1st of February 2002 they denied me any food or drink and ran a ton of tests. One showed that blood flow to the placenta was barely existent and the placenta was failing.

The placenta through the pregnancy had been smaller than normal and functioning poorly.

We learned later, the placenta was full Trisomy 16.

When they realized this, they said they had no choice, I would under go an emergency c-section to save us both.

What I didn't know at the time, was that all these DRs and nurses were being told Noah wouldn't survive. There was no hope. Not to do anything extraordinary because it would be pointless.

I was rushed back into surgery, and I remember how the OR was silent. The only sound, other than a few surgery commands, I heard was "3:45" ... when I finally asked what it meant, I was told ... "It's when your baby was born." There was no announcement. No "It's a Boy!" ... not a peep. Not one consideration for me. They whisked him away without even letting me see him. IF he had died - I would have never had the one thing I asked for ... and that was to just hold him alive once.

February 2, 2002  (aka 02-02-02) and his Nana's birthday.  1 day old

Luckily they weren't right. He didn't die. He was born 1lb 12oz and 13 3/4 inches long. And he THRIVED. When I got hospitalized - I was given the steroid shots for his lungs. At 12 hours old they were already starting to wean him off the oxygen. But the time he was 40 hours old (LESS THAN 2 DAYS!) ... he was taken off the vent and completely breathing on his own.

Shortly - he was labeled as a "feeder grower" .... meaning, the only reason he couldn't go home yet, was because he needed to learn to feed and grow some.

First time I got to hold him - just after coming off the vent at about 40 hours old
February 3, 2002 - Day he came off the vent and at his lowest weight - 1lb 11oz
the 6.6 is the weight of the diaper.  They would take that away from the total weight of the diaper when it was used to find out their output
I believe this was the first time we did Kangaroo Care
Valentines Day - 2 weeks old - hit 2lbs that day
 Tiny hands and tiny feet ......

Kangaroo Care
With Wedding Rings
Noah came home from the NICU the day after his St. Patrick's Day due date. He was out for a week and ended up back in for Easter because he caught a bad cold and was in quarantine. They told me it wasn't RSV, but they treated him as if he did.

One of the nurses took these for me to walk into the NICU to see St. Patrick's Da
SMILES on his due date!! 
This is about actual size (what I have it sized to on the computer) 
Today, Noah is 11 years old. He is the boy who wasn't suppose to live.... He does have some developmental delays, and he is smaller than a typical 11 year old ... but he is an amazing kid. AMAZING. I can honestly say that I witnessed a miracle. I witnessed him.
Noah - Age 11