rAnDoM pIcTuReS

.I realize that some people might go ....... "Why do you keep taking pictures of your son eating breakfast?" (most of them are posted on my other blog) ...  Well.... one........... IT'S FUN ......... and two .... you might not think it's a huge milestone for your child, but every bit my kid takes is awesome!   In case you are new to my pages, Nathan has a rare growth disorder, a type of Primordial Dwarfism.... these kids with Russell Silver Syndrome are notorious for not eating or not liking to eat, and it has been a huge HUGE battle to get Nathan to eat like this.  Hes not being a bird and just picking at his food, he is actually enjoying it.  And I enjoy that he enjoys it.   :)

I am not sharing this picture because he's showing off his underwear, because let's face it, 30 seconds before and 30 second after this picture...... and he was showing MORE than his underwear, or is it a lot less underwear ... anyway ... I am sharing this picture because that little boy was cracking himself up (look at that grin!) .... by mooning his Momma ......

We stick out our tongues around here....... and we make faces!

 see ... even the dog does it!

Nathan and Noah got their new ear pieces :)

Noah was only supposed to get one, but somehow got two ....

Mr. Sensory Processing Disorder can't wear long sleeves ...... I got him in short sleeves!!!  For THREE MINUTES .....  SMH ....  But behold!  The power of Minions!

Free Sample of G-Tube Pads ........

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Anyone want to get Nathan a free G-Tube Pad sample or donate some money to get some?    It would be awesome!

http://www.patchworkpeddler.com/free-sample/

You can email me at MoonNStarMommy@gmail.com - if you would like to order one (to your addressed and send to us) because I can't afford to get him a supply of them before his surgery.  :/

And I want to have the link for later... when I can order some....

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!"

Parent Teacher Conferences

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DB & I had parent teacher conferences today for both Nathan and Kaedyn. Even though Nathan hasn't been in school much this year (boo) ... but he's doing really well. Even though he's not talking - he is reading at a 1st Grade Level ... his Speech Therapist told us that she was observing him in class (reg class, not his inclusion classroom) and his teacher (Mrs. M) was doing a lecture on something. After there was a comprehension worksheet and he did it ALL BY HIMSELF and got them ALL RIGHT! Go Nate! And he's starting to navigate the school on his own. Makes me nervous about him being alone doing things because he is still so small but I'm assured that he is never truly alone. Mrs. E follows him at a distance and his classmates walk him to the Inclusion Room... lol... Kaedyn is doing AMAZING. He needs to work on rhyming and writing his name, and that's all. She commented on how much of a math wiz he is. She also commented on how he gets really emotional and anxious around new people and new situations ... and how he closes down. So .... he's doing REALLY REALLY good but still gets anxious and has two things we need to improve on.  We are really proud

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....

Autism Awareness Day

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April 2nd is a big day for us....   it's an important day for us - almost as big as a birthday ....

So I had decided I wanted to make some awareness ribbons ... and before anyone leaves me any comments saying the puzzle pieces are blah blah blah ...  I don't want to hear about it.

I understand that there are people who are passionately against the group Autism Speaks. Because they are looking for a "cure" and people find that offensive. I can understand and I can appreciate your passion. I don't necessarily agree. I'm sorry if THAT offends people. I don't care that they are looking for a cure. I think they are more so looking for WHY this is happening, and why it keeps increasing. As a parent of one, possibly two, kids on the spectrum. I have four kids who have some sort of sensory issues. It would be nice to know why - but I also understand, that the reasons WHY could be vast and many. I don't currently have anything against Autism Speaks. I also wouldn't change my son for the world (who has Autism). He is amazing. We love him so much and are so blessed to have him. But I got cussed out for talking about how parents GRIEVE when they are given the diagnosis. It's not because they don't love their kids, but it's the hopes and dreams that they had for that child that die and new ones replace them - and let me tell you, KIDS WHO HAVE STRUGGLES with medical things, TEACH US SO MUCH MORE than we could EVER TEACH THEM. I support any group, any parent, any organization that wants to bring awareness to Autism because it's important that we get the message out there that these kids are A-FREAKING-MAZING ..... (getting off my soap box now) ....all I am saying is, I respect your opinion, I don't butt in and tell you how wrong you are, so all I ask for is that mine is also respected. I am just trying to raise awareness and educate. Share my children's stories.

I understand that people have certain feelings about certain charities, I respect that, I'm not here to tell you that you are wrong or someone is right.... all I'm saying, is.... It's not a battle I care to fight and I don't need you to turn me so that I am on "your side"  ...  Awareness is awareness in my book.

So I wanted to make ribbons :)

Nathan was jammin out to his videos ...

Our annual April 2nd in Blue picture.  I think next year we're going to do some tye-dye shirts for Color The World for Autism :)

And of course - we need to let our sillys out ...

Autism Awareness .....

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There was an exchange of talents .... computer geekness for body manipulation ....

My husband has been wanting to get a tattoo to represent all of his kids.  He thought of like a Spirit Totem type thing, and he wants to get all the kids baby foot prints, but what do you do for step kids and bio kids and the ... well...  

So opportunity ... in April, Autism on our minds.  He decided he wanted to get an Autism Awareness tattoo ...

So we looked up some tattoos ... we even asked for Nathan's input ....  and ....  this is what he got done :)   In honor of Nathan....