December 2017 Update...

I know the blog is LONG overdue for a decent update.

This update will not be the full update that is needed though.  I haven't written up a GOOD update in almost two years now I think.

It's been a rough year.  Well, year and a half.   About 18 months ago we learned that our landlord at the house would not be renewing our lease.  She claimed that she needed the house to live in, but she rented it out again.  It was what it was though.

We couldn't find a place to take all 9 of us (at the time.)  We looked at several places we could have made work for all of us, but as soon as anyone found out how many of us there was, it was no...   We have been on a VA Housing list for awhile.  So we ended up moving from the house to camping out at  my Mom's.  Wasn't the best, but we made it work.

We came up on the housing list and managed to get a place, moved in on September 8th, the day before Bubba turned the big 9.  (He turned 9 on 9-9) ... LOL ...

I love this place.  LOVE IT.  It would be better if it had a bigger dining room and kitchen.  But I absolutely love it.  We all love it.  It's perfect for the six of us.

Cal is talking about moving out and moving in with his fiancee ...   she's back and forth here, which we don't mind.  Love seeing our granddaughters.  And our daughter in law.

Anyway .....

Mini Updates.. 

We'll start with Noah.

Noah is almost 16 years old.  I'm not sure what all I have mentioned lately.  He was diagnosed with Glaucoma now, and Aspergers, ADD & severe Anxiety ...  his kidneys are also getting worse.  I think they are relatively stable, but he's starting to spill more and more protein in his urine. He still spills a lot of blood when he is sick, too.  We keep a pretty good eye on it.

Also, he has pretty much stopped growing.  He's 5 foot even, and I'm happy he even hit that.   For a kid who wasn't supposed to live at ALL...

Big changes this year, he's been homeschooling for awhile ... like, since 4th grade, and he decided this year that he wanted to go the highschool and see what they had to offer.  So we did the next school day ...He's been attending since the day before Halloween and loving it. He's mostly in the Life Skills room when he is learning skills to be independent....

He went from being so tiny and not supposed to live to almost 16 years old!

Now a smallish update on Nathan. 

He is such a silly guy and soooooooooooo smart.  He might be non-verbal (or non-understandable 90% of the time) but he tries REALLY hard.  

He doesn't have any big new diagnoses but his hearing has gotten worse, he still refuses the hearing aids because they are "too loud" ...  he also went through the VPI clinic and his VPI isn't as bad as was thought, but it's definitely there.   He has to get another sleep study done and then we'll revisit if he should do surgery.  He also needs to get into a speech therapy consistently (He gets ST at school but the ST he was in outside of school was 6 weeks of therapy and then it was someone else's turn and you got put on the bottom of the waiting list again....)

Of course both he and Noah have significant muscle issues.  Neither of them can walk very long without getting really tired.  Noah will push through it, but Nathan gets so tired out so quickly it's hard.  And he still isn't really gaining weight... 

I am worried about him getting put on continuous feeds.  But if that's what's needed, that's what we'll do.  He is still just getting feeds in his g-tube at night.  

He also gets sick and loses weight quickly. He got taken off his HGH because they removed the diagnosis of Russell Silver Syndrome, they don't think he has that anymore.  They are absolutely certain that he has some sort of genetic issue, but they just haven't found it yet.  

He's doing really good in school .. this year is remarkably different and I think it's because his best friend Rylee is in his class helping him out again.  He adores her.  He's also on anxiety meds and he's not freaking out in the morning anymore, which is AMAZING. 

The most important thing is that he has been hospital stay free for TWO AND A HALF YEARS!!!  That's unheard of with him!  It's AMAZING!!!!!!! 

From 3lbs 4oz at birth to 10 and a half years old! 

That's about it for now until I can really sit down and write up the notes from their doctor appointments... 

Thanks for NOTHING Seattle....

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Today is Crainalfacial Clinic in Seattle ....... so off we go ....... with our cheeseburger!

We are driving along and Nathan announces "I gotta go potty!" So for the first time we had to pull over for a potty break for Nathan! Then he charms the gas station attendant out of a free "Frazil" which is like an Icee. .. this kid.

Over the bridge, by now - Nathan knows we're probably headed to the DR .....

Hello Seattle.....

Before his appointments today .....

We colored while all the different sets of DRs and people came in ....

Update on Today's Appointments: This is long....

First off.... Nathan's left tube is still blocked. First line of defense, we are doing drops for 2 weeks and if that doesn't clear his tube, he'll have to have another surgery to replace that tube. His ear drum is retracted. Not happy with this news.

Then came the speech pathologist. Air is still escaping his nose when he talks (she says - may not be exclusive to - but includes the F sound... http://www.nchn.org.au/cleft/speech_patterns/nasal_airflow_disorders.htm ) ... he also has Apraxia of Speech (http://www.asha.org/public/speech/disorders/childhoodapraxia/ ) and as if that weren't enough .... he also has: VPI - Velo-Pharyngeal Insufficiency -(http://www.lsuhscshreveport.edu/OtolaryngologyHeadandNeckSurgery/SpeechproblemduetoVPI.aspx ) ....
So what does this all mean? It means that they want to run some tests... a scope to look how his muscles move when he talks, it looks like his palate is not moving at all or very little when he talks, and also talking about getting a "moving x-ray" where they take a video x-ray while he talks. Never heard of it but that's what they said. This will most likely result in a surgery to expand his palate or do something to his palate to at least help him make contact with it and air not escape so much. We were actually told he may need that when he had his cleft palate repaired.

And then Nutrition came in.... and this is where I just want to cry. As if all of that wasn't ENOUGH .... Nathan is growing but he is still "Failure to Thrive" and they do worry about him getting proper nutrition. It's not that we are doing anything wrong and we've worked REALLY REALLY hard to avoid this. He'll still be able to orally eat, but it'll give us a chance to supplement his nutrition at night while he's sleeping. To make sure he's getting more calories - because he still burns off calories as fast as he eats them. I can agree with this move, I see how it'll be helpful, but I have to admit I feel a little bit defeated. At least now that he isn't a hit or miss eater, and he eats all day long and enjoys food - I'm more comfortable with the fact that at least I feel - or hope - he won't fall back into the lazy eating and just take what he gets in the tube. It still makes me sad because we fought so hard to avoid this... and maybe I have done him a great dis-service because i fought so hard against this. A lot of the RSS kids have G-Tubes ....

Sigh ..... so ..... that's 3 surgeries ..... three. May not end up with all of them, but two of them are pretty high possibilities ... ENT thinks the drops may work. Probably a 50/50 shot. Seriously, I'm just gonna go cry now...

Thanks for nothing Seattle......... you gave us nothing but bad news :(

The mountain on the way home makes it a little better

Traffic and Nathan don't mix well :(   Once we get to the big bridge, he starts to relax a little bit more....

"What's that?"
"Big Bridge"
"What's it mean?'
"Going home!"

And then when we get to the Dead Fleet .....

Me "what are those?"
Nate "big boats"
Me "what's that mean?"
Nate "almost home!"

Silly Boys and a few Appointments ....

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A couple of days ago, Nathan had went to physical therapy with Daddy and I and then we had to rush off to his therapy (Speech) in hopes of not being late.

(facebook status with instagram pics)

We are at PT with Daddy and Nate is being silly because he is a bit bored and upset we can't go eat at IHOP

And then he had looked over and seen what Daddy was doing and starting mimicking him... LOL...

Nathan was coping Daddy today while he (daddy) did physical therapy

While we were waiting for Daddy and being bored out of our minds........ well, Nathan was bored out of his mind, and I was anything BUT bored trying to keep him behaving ... or semi-behaving....  we were working on navigating his device.  He said "I want to eat snack" and "I want you to open it" ... and I need to go to the bathroom ... lol...  we were doing other things too but ...

And then he spontaneously asked for a snack using his device in the car on the way to his Speech ...  (and signed it "eat")

At therapy with Nathan, he loves the Puffer fish in their aquarium

Two days ago Nathan got fitted for his new SureSteps!

Today ....  we had appointments in Seattle ....   I got up to get ready and found this........

F*CK!!   That's right........ that's what I said.   Might have been more attached to that......  all that being upset about Leapfrog is out the window because all the money we invested in it - out the window.  I can't afford another one right now.  :'/

My sleeping beauties ....

Glad we left early. .. visibility sucks we are hydroplaning

Liam needed a bracelet too ...

In the waiting room ...

Both boys had hearing tests today.   Nathan went first (he's on the left, Noah is on the right) - you can see them on the tv's up on the wall....

Noah's left tube is blocked and his ear drum and we're just not sure what's going to happen.  We're not even going to use his left hearing aid right now - but both boys got to design their new ear molds today.

Nathan while he got his hearing test .... Kaedyn let him barrow his Leapfrog.

Noah getting the pink slime for his ear mold :)

Noah getting a new ear mold. Found out one of his heading aids isn't working at all anymore (he has hearing loss in only his left ear but we lost his heading aid - read he hid it - and got another set. ... then when I threatened him one day after he "lost" the second set, he brought me both)... so his newer hearing aid is still good and he gets a new ear piece because he can get a new one a year even though he had been really responsible with taking care of his.... he picked out red, orange, and black swirled

Roads were terrible! Visibility was nearly a few feet at times and we hydroplaned at several times. ... on the way home it took over 3 hours to get through Seattle and Tacoma. ... we had to stop and eat once we realized we weren't going to get far. ... crabby kids because they are hungry don't mix well with traffic. ... Nathan just kept crying he wanted to go home.  Had to stop for food... and even then he was M-E-L-T-I-N-G  D-O-W-N ..........

When we got home we were welcomed with this :)   There was a double rainbow ...  not sure if you can see it in the two smaller pictures....

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!!!!