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.

Nathan got his A.C. DEVICE!!!!!!!!!

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Nathan got a box in the mail today!!!

We opened it up and it was his NOVA CHAT 7 ..... Woohoo!!!   He was so excited!

We are just doing a rental basis right now - which is $75 a week ... but it's better than not having it!

Facebook Signs ...

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I was talking to my girlfriend and telling her how I was annoyed with some people.  I would ask people who are my "friends" and "family" to go like our facebook page.  What is the big deal?  You go like a page, you get our various graphics we share on your page.  So much of it has to do with awareness for different things, or uplifting words - or news articles.  I share a lot of things from other pages, and then I save them and I post them in the albums on our facebook.  We have about 38 or so albums right now.  There are a bunch of different Autism albums, there is one for IEPs, Chromosome Abnormalities, Learning Disabilities, Inspirational Words, General "Special Needs," Bullying, Love Letters to Special Needs Parents, Premature Birth, Growth Issues, and a lot more things.  

So anyway - I share something - I ask for people to like the page....  hours later...  nothing.  Not even one like.  It's been like pulling teeth to get people to follow the page.  At first I just didn't care ...  but I really do want to help bring awareness to these medical issues.

So I ask people, and I message people on facebook ....  and still nothing.  But I see them share stuff of other peoples kids, that they don't even know personally, and I see them share crap like "Share this Llama for no reason" and it's just IRRITATING ....  it's like, fine ... I guess you don't support our kids.  Thanks.... no not really ....  just actually hurts a little.

So my girlfriend suggested that I do those pictures with the kids holding up the signs.  I'm like, okay ... that's a good idea.  So today I did some with the kids.  I'm gonna share one a day for the next few days and see how it goes.  But here are the pictures.

If you read this and you'd like to LIKE the page, we'd appreciate it.  Trust me, we'd really appreciate it.  Nathan "helps" me with the page and Noah asks how many people have liked it everyday.  It's not just my thing, it's theirs too.  It's the whole families.

 **Update**  We were at 63 likes prior to starting the pictures. We'd get one or two likes a week - if that - prior to that.   So now we're up to 88.   I know we won't get to 1,000 anytime soon.  I only put 1,000 on the cards so that we could use them for awhile.

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!!!!

August Update ....

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I haven't updated in a long time......  I took a blogging break over the summer, for the most part.  After realizing there was NO WAY we were going to get to the conference, I honestly had a moment of ... grief, I suppose that's a good word.  I really wanted to get us there.  But the conference has come and gone, tons of families in our network went and I saw all sorts of blog posts & pictures .... it was all bittersweet ... seeing them with one another and then thinking, Nathan should be in that picture.

:: sigh ::

 Kaedyn has been running a 103 to 105 temp fever ... it has been driving me INSANE ...  from Thursday night to yesterday (Monday) ... I have been sleeping with a burning up baby in my bed and we don't have a big bed.  Barely have room for Dennis and I ...  add in a big baby and ... well...  I don't sleep much.  He has been MISERABLE ...  you can see more from my other blog with .... 104...IS NOT A GOOD NUMBER and 104 ... IS NOT A NICE NUMBER x2  ...  Thank freaking GOODNESS that he's FINALLY feeling better.  Hubby took him to the DR yesterday while I was on my way to Seattle with Nathan .... the DR confirmed she thought the same as the Urgent Care Doc on Saturday, that it's just some virus that is kicking his ass and not leaving names he can't seem to break threw... but GOOD NEWS is .... he has finally broken the fever and is starting to feel better.

ALSO ...... Noah broke his nose this summer!!! CRAZY!!!  You can read about that one my other blog right now .... ANOTHER BROKEN BONE and NOAH'S SURGERY ...  

I guess at the DR .... the nurse took Kaedyn back, and mind you - he suffers from clingontomommy syndrome ... and he had just watched me walk out the door without him, just before leaving with Daddy...  so he was still in that gonna break down and cry at any moment cuz I want my mommy area...  and the nurse said to him "Boy, o' boy, I know who your mommy is just by looking at you"  HA HA HA HA HA ....  and my poor little boy just burst into a bubble of tears with the pathetic "MOMMA" whines in there.  Yep...  ha...  oh and apparently the DR thought my note was funny cuz I put as a "symptom" ...  super crabby & and really clingy ... ha ha ....

Anyway ....  off to Seattle I went with Nathan yesterday...  for once I took no pictures...   We were going to the Cleft Palate Clinic to find out what our options are.  Nathan's school speech therapist told me towards the end of last year that he had air escaping when he was talking and she figured this was due to his cleft palate ... at the time we had the appointment made for June, but I had a brain fart and thought it was a couple days into the week, and it was on the Monday - oops.  So we had to reschedule it.   So we did ....  it's been long awaited because after Nathan was born (they discovered the HIGH SOFT CLOSED CLEFT PALATE we were told then or the SUBMUCOUS CLEFT PALATE.... we're told now.  One of the Doctors turned around and looked at me and said "He definitely has a submucous cleft palate" and I'm thinking ...  why else would we be here.

Oh and let me back up a bit...... what is it with every Doctor wanting to solve the mystery of Nathan!?!?!?  One of the Docs took one look at him yesterday and asked me "who diagnosed him with Russell Silver Syndrome?"  I told him, the Genetic Doc in WI and Dr. G confirmed it here ... "Genetically?" he asked.  I said ... "No, clinical diagnosis"  and he's all "Well he doesn't fit the classic RSS guide line" and I'm thinking - is this guy serious??? Then he's like "If I come up with any bright ideas, I'll let so-and-so geneticist know..." and didn't even say HIS geneticist ....  and then "We'll figure it out" .... like he's going to be the genius to suddenly figures it all out ... the mystery of Nathan ... 

SERIOUSLY!?!?!   UGH .......... yet another Doc not wanting to believe his RSS diagnosis ......

Anyway - Nathan first had an ultrasound of his kidneys and bladder done (all was great) ... and then he had appointment with Craniofacial Doc #1 ... DR. C ...  Dr. C was the one who is going to figure out the mystery of Nathan.  He is the division Chief ...   He came in, took a look at Nathan's cleft and humm'd and hawwww'd ...  and then he said that Nathan would have to have surgery for his cleft.  I asked "He'll definitely need surgery?"  He said "yes" ... then I asked how invasive it was and he says "Not invasive at all, we do it all the time, he'll just need a night or two in the hospital at the most...." ... yeah that's not invasive at all ... it's a walk in the park....  he (or his med student) asked me about "have you thought about doing the tube feedings" and I was like... "It's been brought up but I don't see how it would help given the history of the other RSS kids.." ... he's all "how so?" ...  "Well, lets see....  all the kids his age if they have g-tubes or not, everyone is still the same weight ... I don't see how it's beneficial ..."  Yep, that's right.  Not gonna subject my kid to that when I don't see how it helps any of the kids ...I have fought to hard to work with him to eat normally to throw it all away.  Now if he was losing weight and there were other issues, I might consider it, but I don't see any benefit to crossing that bridge... oh and he was talking to his intern and said "You know how palates are straight?  His is crocked, and then there is a bump, and then there's like jagged areas and ..."  Guess his palate isn't very pretty ...   but his dangling heart is one of the prettiest ones around!!

Speech comes in ...  Mrs. L ...  she sits an arm and half length away ...Nathan is GROWLING words at first, and then I get him to say a lot of things by reading The Very Hungry Caterpillar ...  she  eventually says that since he can say "Bubble" and "Purple" and "Go" and "Daddy" that his speech issue is NOT due to his Cleft Palate ... ooooooh-kay?  ...  that's what we've believed all this time.  Since it hasn't really get better other then his favorite words.  I should have explained to her that those are the words we work hard on because it's some of his favorite things....    She umhummed and ah-huh'ed everything ... and then asked a few times when he started speech therapy .... A FEW TIMES ...  so was she not paying attention?  And then she says "I don't hear any evidence of him losing air when he talks" and I'm thinking ... you never got close to him and he wasn't exactly cooperating!  She says "I think he has a disorder called Dyspraxia" .... where the muscles aren't connecting correctly with the brain and he can't seem to form the words properly.  It does take him a long time to master a word, and it takes a long time for him to master one sign (ASL) ...

So I don't know what to think....

So when Doc #2: Dr. P (the Clinic Chief .... so which is a higher position, the Division Chief or the Clinic Chief?) peeks in, she starts blubbering off things like .. "I am pretty sure he has SEVERE VERBAL DYSPRAXIA" and I'm thinking ...  why didn't she tell me she thinks it's severe?  I can't help wonder if this is due to his brain malformations?  So when she leaves, he takes a look ... listens...  shows his intern Nate's beautiful bifid uvula (upside down heart shaped uvula) ...  So this Doc says that surgery is iffy ....  then says, because Nathan had tubes put in his ears, and one has fallen out - the other is still in place ... (he had tubes put in NOT for ear infections but because he has thick fluid build up in his ears and can't hear) ...  he says if he doesn't pass in the ear he has the tube out of, then surgery is going to be necessary and if he does pass, then it probably won't be. 

The other thing that was brought up was an Augmentative/Alternative Communication Screening to see if an alternate form of communication could be beneficial to him ... 

Um........ DUH!

So .... some of the options are of course American Sign Language

but he doesn't have full motion in his hands so signing is hard for him AND he doesn't pick up on signs very well ...   He does do the following:  More, Go, All Done, Thank You, Eat, Please, Play, and we've worked on Bath but he doesn't have that down ...

Another option are Communication Boards

I have seen this implemented in the school system - they are these cards that the kids can point to what they want - or closest to ...  and you can better understand what they are trying to say.   I actually talked to the Special Education person at the school district building today and told her what they said yesterday (about the possible speech diagnosis) and she said she'd talk to the speech therapist at his school and since we already put that (the communication boards) in his IEP, they'd try to start doing that and get us some for home too.  YAY!  Who knows when the evaluation will take place and so ...  I want start using this stuff asap because he is getting increasingly frustrated when he can't get across what he's trying to say.

And in doing research I saw this little device, which looks really interesting ...  instead of having a book of cards, this little device holds them...  it's called a MINImo device...

At the end of yesterday, Nathan had to get his blood drawn ... I almost forgot about it....which I'm sure Nathan would have LOVED ... but right before getting in the elevator to leave, I remembered ...  ha ha ... Poor Nate...    Anyway, we check in and wait and wait and the guy calls us back with a little boy who's gotta be just over a year old...  not much smaller then Nathan (sad) ...  and he takes us back ... tells them to go in one room and us to go into the room directly across the hall.  That little boy was just screaming which was making Nathan extremely anxious, and making him cry.  Once the guy was poking that poor little boy (could tell by the change in screaming he was doing) Nathan was signing every thing he could to let me know HE DID NOT WANT TO BE THERE ANYMORE AND WE COULD GO NOW!!  He was signing GO and ALL DONE and he was doing this ... it's a new one, from watching America's Got Talent to much - it means STOP ... LOL... 

 Top one is with his socks on .. he's doing an X ... bottom one I manged to talk the socks off of him for a moment, had to put them right back on after...

He is so funny.   The guy came in and Nathan was just freaking out at that point...  and the guy FLICKED it into his vein... I'm serious, he just flicked it with his finger!!  Although he didn't really say a word to Nathan, he didn't try to comfort him in any way - infact, when Nathan was screaming from fear and anxiety, they get was laughing....  kinda pissed me off... but I got so distracted with the flicking of the needle....I didn't know if I should be appalled or impressed.... 

In other news, today - Noah's kidney Docs wanted to check out Nathan's kidneys just to be on the safe side...   the ultrasound and blood test were for that...  and I got the call today that everything is A-Ok and they don't foresee needing to see him anytime in the future.  YAY!