Nathan's FIRST LOST TOOTH!

.Double entry day ... woohooo..... yep yep ...

So two days ago, Nathan announced he had a loose tooth!  This is his first (not removed by the dentist) ....  so it's super exciting!!!

Well, yesterday he could push that sucker almost all the way out of his mouth!  We did a video, it's on our youtube channel .....   but here it is for anyone who wants to watch.  Um excuse the burping...  but at least he has manners! LOL


Well, this morning, he wakes me up and tells me -- "I LOST MY TOOTH!"

I guess Daddy and him were on the computer this morning, and he was playing with it, and all of a sudden Daddy heard something hit the desk.  It was Nate's tooth!!  LOL....  Nathan grabbed it and immediately put it under his pillow!!  Oye....

Mystery Diagnosis * Day 6 *

6:45 AM Update ..... not much to report. No fevers last night other than the one he spiked right before bed. But none over night. He slept most of the night. They hooked his feeds up last night, started slow to make sure he would tolerate it and then bumped it up to his *normal* rate of 40. He had tolerated it great. No vomiting from eating (slowly) or his feeds, so YAY ... and he doesn't have nausea meds on board either, not since his CT scan. Lab should be making rounds soon - once they do, they'll have all their tests other than the BM (they wanted BM, Urine, Throat Culture, and a bunch of Blood Work...) so as soon as he poops (if he didn't over night and I didn't know about it) then that will be complete. Doc said some of the tests may not come back until Monday. Otherwise, just waiting on them to come round this morning. Uneventful is good though.

Breakfast - He drank about 3 oz of his 4 ounce orange juice box, and a couple bites of waffle. .

Lunch!  Lunch! He ate a chicken tender, and 1/2 a cup of cucumber, and a few strawberries. And a little bit of milk.

He ended up snacking on lunch for a couple of hours.  But the above is what he ate over that period.  He was nauseated both after breakfast and lunch, but managed to hold it down without any nausea meds.  Even though I had asked for some to make him more comfortable.

Someone is feeling better!!  (Overall feeling better)

Day 6 ... finally feeling better. He's smiling and laughing and joking around... it's awesome!

Nana and Papa stopped by.   My Mom brought me some stuff I needed from home... like Nathan's HGH ... since he's been in the hospital SO LONG ... the DRs wanted to get him back on it.  And some other stuff.  She brought me some food that I can store in the room.  

While she was here ...  she wanted to go to the gift shop and get Nathan something that would cheer him up.

Settling down for a nap? Maybe! Watching Despicable Me..... Minions! Finally something other than the Doc McStuffins dvd we have been watching non stop pretty much since Tuesday!

Watching Despicable Me ...  for the first time.  He's not one who likes movies with suspense, it scares him.  But he watched it ..... and watched Despicable Me 2!

Changed Nathan's diaper, and he wanted to pee in the urinal... so I went and got it and helped him up to a standing position and he had to lean heavily against me for support.   So I got him up and had him walk around - he was very unsteady, and cross stepping trying to keep his balance.

But we got him out of the bed for awhile...

Going for a Ride .... on his IV Pole....  

Dinnertime!  He didn't like the pizza at all .... so we ordered him a grilled cheese and so he ate that...  So over all, he had a couple sips of chocolate milk, a couple sips of Sprite ... a handful of fruit .... (his hand, not mine) .... and almost a half a grilled cheese sandwich.  There was a corner left of it....

Thought I would show our room a little bit.  We're in a private room because we're in isolation.

The main part of the room....

The sink/counter area and door....

This is the closet and bathroom

And our view of scaffolding...

Something is making an evil return!!   Looks like Nathan's Staph is coming back :(

Doctors came in and all agreed that's what it looks like, so they made a fun picture on his belly .... ordered a new (different) antibiotic for him.

We'll see what the night holds and what the DRs say tomorrow.

Night 2 with the major Night Sweats..... this should be clue one he's better right here because he wasn't even doing this with his 106 temp!

Funny thing that happened today .....   one of the fellow RSS Mom's noticed this on the Wikipedia page for Russell Silver Syndrome...

Fits so many of the kids.  LOL.....  it's true, should be a sign/symptom of RSS ... LOL...

Amazing Video of Katy Perry and Jodi DiPiazza from 2012

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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...

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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.

Nova Chat 7 Goes to School ...

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First off ... ignore my laundry in the background.   Secondly - this is Nathan checking out his Personal section of his NC7 ...   we are avoiding the buttons with - say - address, phone number, etc...   that is why I have some covered up and am directing him around them.  Otherwise he would have to play them in order.  Ha ha....



Today when I took him to school, he did NOT want to go .....  this is him saying "I'M SICK!!!!!"

He's telling me "MY TUMMY HURTS" ... ha ha... he's faking.

This was outside his room today ... had to take a picture of it......

We have a routine.  We drive him to school (if he took the bus he would be on it for probably OVER AN HOUR - at least 45 minutes - and for him, that would NOT be okay - he would spend the whole time crying.)   He eats breakfast at school.  So we go in his room, drop off his stuff (he's usually unwilling and sad if not crying) ....  we take his breakfast back to his room because it's quiet in there there... there isn't that many people and he can focus on eating.  He might be extremely pokey puppy about it all - but he eats.

Here he is sporting his noise cancelling headphones at school.  We need some at home - the definitely help him relax.

Later that day - we went to pick up Nathan from school!  He had taken his NC7 with him and we heard the speech therapist was THRILLED and wanted to know how to get it for the other kids.  LOL...  it was a long long process....

And I say - even though insurance hasn't agreed to pay for it - and we're "renting" it .. and trying to raise money to buy it.....  I say... now that we have it...   they are going to have to come knocking on my door and pry it from my cold dead hands (and Nate's) to get it back....

When we left school, Nathan HAD to carry his NC7 ...  course, he's busy shooting me with his M&M tube that Kaedyn picked up for him as a treat.

"Therapy Boxes"

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I know I have some updating to do over here ... I'm hoping to get it done tomorrow.   (Or today as it's like, 3am ...) ....

BUT .......

I needed to share this right away.   Before I forget!

The other night we were watching the 11 o'clock news.  One of the leading stories was about how in a local school (Tacoma) there was a school ....   The part that got me was when the interview with the child's mother who broke the story.  He - somehow - got back by this PADDED ROOM where there was a kid in there crying and crying and the little boy felt so bad - he wanted to help -but couldn't.  Anyway - apparently this school has this padded room where the lock up students who are having emotional or behavioral issues.  There is a mother on there - interviewed - who's child is one of the ones who goes in there.  She's fully in support of this room saying people don't understand.... etc...  her so can get so out of control that he's a danger to himself and others.

READ AND SEE VIDEO HERE

So .. as a mother of children with unique needs...   I find it so disturbing.   I guess I can understand - to a point.  But ... I think it's torture.  There are other ways to handle these things.   In my opinion - this is so wrong.  This is a lazy way of dealing with this.  It's uneducated!  In a place of education - it's completely drips of being uneducated about how to positively help these kids.

What kills me the MOST MOST MOST is that there are 9 kids in this inclusion room and ALL NINE SETS OF PARENTS signed permission slips for their children to be locked up in this room! 

There is no way that I would EVER sign a permission slip allowing educators to be able to lock my child up in a room.

They say that kids are locked up there from anywhere of 15 minutes to a couple hours.  And if that little boy found that room and no adult was around - WHAT THE HELL.  What if something happened??? What if that child that was locked up needed to use the bathroom.  What if something happened and he hurt himself or needed help or whatever.  It BLOWS MY MIND.

The district responded to the outcry from parents after it went viral ...   this is a video from the day after the story broke. 



Then the very next night, this appeared on Nightline.   And it just disturbed me even worse!!!


 This is outrageous.  That's my thoughts on it.   I would never do that to my child. 

Alternative Communications....

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So in May, a few days prior to Nathan's surgery, we had a very long awaited and exciting appointment.  Nathan has been working with his Pod (communication book) for awhile now.  He is finally learning to to navigate through it a little better but it's still very hard for him (and for us) ...

 Nathan's Pod (communication book)

We've had our hearts set on an iPad and ProLoQuo2Go Software.......  (you can read more about at iPAD & AUTISM)  It was the first software that I became aware of .... so of course, I thought it MUST be the best.

It's not.

Nathan's appintment started out simple enough - working with the Pod book just to get a feel on if he could identify photos and use them for his needs - which he did very well using both balloons and bubbles....

Then she switched to using different electronic devices to see which one (with program) he worked well with best ...... (there was a lot of bubbles going on!) 

He is getting a Nova Chat 7 System ... it is lightweight, has a built in handle and stand, amazing program that will actually predict what you might want to say next and put those options up for you ....  you can put together sentences ....  and the program with GROW WITH HIM ....

Nathan was very proud of his "Taxi" Ride of the day ....  

 *BEEP*BEEP*BEEP*  Move out the way!

 Here he is practicing on the device he will end up getting in 4-6 months (depending on when insurance gets it's head out of it's behind) .... 

We are SOOOOOOOOOOOOOO very Very VERY EXCITED!!!!