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... 

It's that time of year....

I am entering the time period that I do, every year, where it's getting closer to Noah's birthday and I experience some ... I don't know how to explain it other than to say PTSD, because that's basically what it is. And I reflect. It never fails, it is always around now.

I think any parent, especially mother, who has had a difficult pregnancy, birth and watching their child with medical issues struggle, having to basically force and offer up your child to experience pain for their better good, it's hard. It's really really hard to have to hand your child off to someone and put your child's life in someone else's hands, it's terrifying.

As a mom, I don't fit in a box. Noah has a very strong certain diagnosis and Nathan does not. Nathan - who struggles with medical issues a lot more than Noah - has no box, he no longer fits in a group, and we just float around knowing there is some chromosome issue but not knowing what it is because it has not been found yet. But I don't have a group of mom's I can go to - to give and/or lend support. It's scary.

This time of year I always think of Noah, and reflect on my pregnancy and his birth.... which always leads into Nathan's pregnancy and birth too.

My pregnancy with Noah was really stressful for me. I had a five year old Calahan (who turned 6 right before Noah was born) and struggled through five years of secondary infertility, and at that point I had a total of five miscarriages. I found out that I was pregnant with Noah and a moment in my life where I wanted to leave my ex husband. My marriage was over that summer, but I spent several more years trying to "make it work."

Very early on, we realized things were not "right" with the pregnancy. By 16 weeks things had escalated to the point where it was highly suggested that I have an amnio to find out for sure what was wrong. Because something WAS wrong.

The day before Halloween that year, I was sitting in my doctor's little exam room with my ex husband, my mom, and my five year old son. In that moment, my life would change forever. I had no idea just how much my life would change.

And then my beloved doctor said the words.. "Well, the baby doesn't have Down's Syndrome or Spinia Bifida ... but he has something called Mosaic Trisomy 16."

Everything else literally fell on deaf ears. It was like, there was a buzz in my ears, in my brain, drowning out all the words ... all I could think was, there is something wrong with my baby, there is something wrong and I don't care. I am going to love this baby no matter what.
And then he said "Oh and by the way, it's a boy!" and I heard that.

A few short days later we met with another doctor at the hospital where Noah would end up being born, two hours away from home. He met with us in a larger room where meetings would likely take place. He sat us down ... me, my ex husband, my mother and my five year old son ... and he said things like "no quality of life" ... and .. "mentally and physically delayed" ... and ... "stillborn" ... "no chance of life" ... "possible 24 to 48 hours of life" ... and then he said, "I highly suggest that you interrupt your pregnancy."

Eight words. I thought, I can't interrupt my pregnancy... I'm only 19 weeks pregnant, I can't have him now because if I do, then he'll ... die.... and I realized what he was saying in that second. I realized he was telling me to kill my baby. He was suggesting I abort my child. The child I spent five years trying to have, the one I fought for, loved, cared for, desperately wanted... he was suggesting I don't even give him a chance.

I said .... "that isn't an option." It wasn't.

This doctor turned and looked at my (then) husband and said "And how do you feel about it."
In the half of a second it took me to think - I thought, it doesn't matter what he thinks, it's not his body.... and he said "I agree with her."

And I thought "wow" .... maybe he wasn't all bad...

The rest of my pregnancy I was told he would die. If he didn't die before he was born, he would die shortly after birth. If THAT didn't happen, he would die with in the first 24 to 48 hours. And if by some MIRACLE he did come home, he would be so mentally and physically delayed it wouldn't be worth it.

That was the speech I was given. The words burned into my brain.

"It wouldn't be worth it......"

I would go shopping, and I would find myself in the baby section looking at tiny little baby boy clothes, little boy stuff, toys, everything ... I was looking and I would pick something up and think or say, "I'm gonna buy this" and then my heart would sink, and I'd say ... no, not yet. I would put it back. I knew emotionally if that doctor was right, I would go home and see stuff, and I couldn't. I couldn't go home and be reminded ... I couldn't go home and have to deal with all the baby stuff. I just couldn't do it. So I didn't buy anything. My friend gave me a changing table. My mom got a bassinet, and a car seat/stroller combo... that was all we had basically. Most of the stuff I did have I got at Goodwill or garage sales ... but I couldn't see buying anything new.. .and I didn't buy much. I did get a diaper bag, that was pretty much it.

It broke my heart! I wanted so badly to be excited and experience the pregnancy that I deserved. It wasn't that kind of pregnancy though. It was filled with questions that couldn't be answered, a sense of being numb - protecting myself - and sadness. I had hope, I always had hope that he would beat the odds. My heart screamed he had to be okay, but my head said ... it could go either way.

My OB - the one I loved - never say one negative word about the baby. He never made me feel like he was going to die, or have issues... we made a birth plan, took birthing classes (again) and when the instructor said "Statistics say that every one in four women end up having a c-section, look around, who do you think in this room is going to end up having a c-section...." I stupidly raised my hand and said something like, "with my luck, it'll be me."

I made my doctor promise me, PROMISE ME, that if he thought Noah was going to die, that he deliver him. I wanted one thing - just one thing.... I wanted to hold him just once, breathing .... I would take whatever time I was blessed with - but I just needed to hold him once with breath and life in him.

So at 33 weeks, I was having contractions, I developed Pre-Eclampsia, Noah was having heart declarations, and things weren't seeming well inside my womb. I had told my Mom not to worry that Monday after my doctors appointment. But then the very next day I had to call her from my doctors office (they let me call long distance) and I was crying hard.... I said "Mom, you can worry now." They gave me the first of three shots in the office - to help his lungs mature - before telling me to go straight to the hospital. Don't pass go, don't collect 200 dollars, just go to the hospital.

A few days later Doc said it was time to go get him born, and he had to send me off to the hospital two hours away that could handle a baby that had medical issues and handle a small baby. So after a few days in the hospital - I got transported in an ambulance in a snow storm, two hours from home. I was thinking he would be about 4 lbs.

He said I would have him the following day, 2-2-02 .. the most awesome birthday ever, and he would share his birthday with my Mom. He was going to be her birthday gift.

But I got to the hospital and they did their own tests, and their tests showed things that were not good. His smaller than normal placenta was failing, and they weren't sure he would survive to the following day. I got to the hospital around noon, and at 3:45 PM ... Noah Alexander was born into the world.
I have major PTSD about his birth. The operating room was silent. You could hear a pin drop silent. They were preforming an emergency c-section and the doctor would make comments. But then the anesthesiologist started saying "3:45" over and over again, so I said "What is 3:45?" and he looks at me... and says, "That's when your baby was born."

There had been no cry, no sound, no announcement of "It's A Boy!" They didn't say anything, I didn't see him, I had NO IDEA that my baby boy had even been born. THERE WAS NOTHING.

I started crying uncontrollably ... I was trying so hard not to sob ... they were still inside my belly. They had taken my baby to a room, on the side of the operating room, the door was closed and I could see several people around what I could only assume was my son...

My baby was outside of my body, because my body was failing him, and I just wanted to see him, touch him, hold him - one time - just once - before he died. They were taking that from me! They were not going to respect my wishes. I wanted my baby and I couldn't even see him.

They closed me up, and took me to recovery. I laid in the bed, numb, and there were people who would come in and say things like.... "He is so cute!" ... "He's so handsome!" ... "He's looking around wondering what everyone is doing, taking in everything." ... "He's doing well" ... they listed off some issues with him, and it seemed like forever before I was given a weight.... he was 1lb 12.2oz and 13 3/4 inches long.

He was born at 3:45pm ... my Mom, ex-husband, and his mom got to all see him around 7pm (because they weren't numb from the chest down. I didn't get to see him until 9pm that night. Six hours later.

He was so tiny. I couldn't believe how tiny his little hands were, his toes ... he had the cutest button nose, and a little bit of blonde hair... I could hold him in one hand... he wouldn't all fit in my hand, but he was so tiny. He was hooked up to this and that, he was on a ventilator, and at first he had an IV in his head. But he was so tiny.

And you know what? He didn't die. 40 hours after his birth, his breathing tube was removed because he was doing it all on his own. 1lb 11oz at that point in time and he was breathing 100% on his own with no assistance. My little boy was kick ass stubborn.... nursed and doctors would go by and say "Why is this baby off the vent?" ... it's not often you see a 1 to 2 pound baby without a breathing tube.
He was quickly labeled a "feeder grower" meaning the only reasons he was in the NICU was to prove he could eat and to grow and gain weight. There were a few bumps in our NICU stay, but he came home the day after his St. Patricks Day due date.

Life has been bumpy, he has been in and out of the hospital - not very often though - and countless tests. We had to live by the motto that "anything can happen at any time and we could lose him" ... but recently I was told that we could breath with that - Noah's good. He has his health issues, but he didn't feel we needed to live by that motto anymore.

I call him "The Boy Who Lived" ... he is my first little miracle and not many people can say that they have met or seen a miracle. There are a ton of miracles out there ... preemies that beat the odds, kids with crazy scary medical issues that beat the odd... and even the ones who lost their fights - doesn't make them any less a miracle.

Noah beat his odds. He is amazing and I am so blessed. Not a day goes by where I don't think how lucky I am to have my four amazing boys, to be able to love and guide our two boys with medical issues. Regardless of the death scares and everything else.... we are lucky to have these boys in our lives. They teach us so much more than we could ever teach them.

If you read this far, you deserve a gold star for the day.

Aspergers & Noah

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It's Autism Awareness Month - and let me tell you a little something about our lives on the Spectrum. We don't have just one kids on the Spectrum, we have two.

Noah was diagnosed with Aspergers just recently. He's always had it, I started questioning it when he was about three. There would be days where I just *knew* he had some form of Autism. Knew it - deep in my bones. Then the next day, I'd question that feeling. I ended up being on the fence about it for years. Then when I did all the paperwork for Nathan, it was pretty clean Noah was on the spectrum too. So I brought it up - to the Neurologist that sees both the boys, and he had me do some paperwork for him - and it was clear he was also on the Spectrum, more on the Aspergers side. Plus pretty severe anxiety, and ADD.

Noah has times when he's so badly got sensory overload, and it comes on quickly, and sometimes with very little stimuli ... He kinda sits and just covers his ears ... he gets super angry, argumentative, and sometimes it's hard to get him to move to a quieter place where he can calm down. Sometimes it's hard for him to pick up on things, sometimes things have to be explained to him over and over - sometimes in different ways - before it clicks. He also needs a ton of reassurance about some things.

But that's just Noah, it's how his mind works.  We LOVE him just the way he is.  

Emotional Vomit of a Worried Mom

So since Noah and Nathan's appointment with the Genetics Doc (team) ...  my mind has been reeling a bit.  I got the letters in the mail today - from the appointment.  Ya know, the visit summery, the doctor's notes that he dictated.  So I am just reading through them....

Basically - the diagnosis we've been living under for the past 5 years is being taken away from Nathan.   That of Russell Silver Syndrome.

The biggest reason is - as Nathan is getting older, he is seeing less and less of the RSS features, and the brain malformations, the cleft palate - and maybe some other things, point in a different direction.
But he doesn't know what.

He mentions his "cerebellar vermis hypoplasia" which we know as Dandy Walker Malformation

the "bilateral frontal polymicrogyria" knew about that too

and "2 subcortical cysts" ....  knew about that....

Doc G. points out that he has a "marked 3 year delay" in growth.  He has proportionate small stature, thin musculature, and distinctive external features.  He has very mild clinodactyly, distinctive foot with presence of short second toe (shorter than both the big and middle toes) ...  he has distinctive craniofacies - which has a triangular aspect to it.  He has hypoplastic columella, cleft palate, cleft chin with prominence.

Not sure what  overhang columella is - looked it up and couldn't find any information about it really - just links to disorders ...  so I found out "columella" refers to the area between the nostrils ... and over hanging just means what it sounds like.

The picture below is NOT Nathan, it's an example of what is being talked about.....  

Then I saw stuff like....

"hypoplastic nares"

1. Hypoplasia is a congenital condition, while hyperplasia generally refers to excessive cell growth later in life. (Atrophy, the wasting away of already existing cells, is technically the direct opposite of both hyperplasia and hypertrophy.) Hypoplasia can be present in any tissue or organ.
2. The anterior nares are the external (or "proper") portion of the nostrils (nose). The anterior nares opens into the nasal cavity and allow the inhalation and exhalation of air.

 and "apparent telecanthus" ...

Telecanthus (from the Greek word "tele" (τῆλε) meaning far, and the Latin word canthus, meaning either corner of the eye, where the eyelids meet) refers to increased distance between the medial canthi of the eyes, while the inter-pupillary distance is normal. This is in contrast to hypertelorism, where the inter-pupillary distance is increased.

The distance between the inner corner of the left eye and the inner corner of the right eye, is called intercanthal distance. In most people, the intercanthal distance is equal to the distance between the inner corner and the outer corner of each eye, that is, the width of the eye. The average interpupillary distance is 60–62 millimeters (mm), which corresponds to an intercanthal distance of approximately 30–31 mm.^[1] The situation, where intercanthal distance is intensely bigger than the width of the eye, is called telecanthus (tele= Greek τηλε = far, and Greek ακανθα = thorn). This can be an ethnic index or an indication for hypertelorism or hypotelorism, if it is combined with abnormal relation to the interpupillary distance (A D STEAS).

Traumatic Telecanthus refers to telcanthus resulting from traumatic injury to the nasal-orbital-ethmoid (NOE) complex. The diagnosis of traumatic telecanthus requires a measurement in excess of those normative values. The pathology can be either unilateral or bilateral, with the former more difficult to measure

AND ....  "narrow palpable fissures in the horizontal plane"  I know fissures means cracks....

I'm not sure if that's in reference to his nose or what.....    I'm just.....  ::: sigh :::

And now, instead of RSS, it's "Undiagnosed genetic bio-medical diagnosis to account for Nathan's congenital anomalies and developmental delay." 

And then on the page below, the thing that jumped out at me was "for exclusion of a congenital disorder of glycosylation of both N and O subtypes"

And there was talk of UPD which is Uniparental Disomy - which means that instead of getting DNA info from both parents - for an arm or what not of a chromosome, or some part of the DNA, the information for both sides came from ONE parent.  So instead of getting info from Dad and Mom, it is Mom and Mom or Dad and Dad.

There is a whole list of UPD's  ...  one of which IS Russell Silver Syndrome.


Noah's appointment didn't go the same way.  At least his diagnosis is solid.

There were a couple of things though ....  

Noticed "Pectus Excavatum" and thought - well - what the heck is that?  Makes sense once I found out what it was... it means the chest is con-caved in a bit

This is how they fix it.....

Another thing I didn't know what it meant was the "pes planus" which just means flatfoot(ed) which that I knew.

And the "acanthosis nigricans" which we talked about at the appointment, it's the darkening of the skin around - like the neck area - and is often a sign of pre-diabetes.  I have tried to scrub this off his neck but it doesn't go away.  :/  Scary.

"At this time I think it is reasonable to continue to attribute most of the symptoms and signs to Noah's Mosaic Trisomy 16" ... including his muscle issues.  He has strength - but his muscles wear out and weaken up very easy.  We've been trying to figure out what all could cause these muscle issues - can't figure it out - and Dr. G said ... basically, when Noah was conceived, of course his cells didn't reproduce correctly, and that includes his brain.  So his brain is wired differently and he thinks Noah's brain and muscles can't communicate well - so it's a neurological thing.

He also basically said that Noah wouldn't ever be able to live by himself.  I'm not 100% sure I agree with that, but I do know it's a huge possibility and we (DB and I) have already talked to the older boys about needing to be there and take care of their brothers.  Kaedyn is a little young to have that conversation with.  But still - to actually hear it - out loud - it's like BAM.... punch to the gut.

It doesn't MATTER that I have this knowledge already in my brain, that I have said it myself - and discussed it as a family.  It's like the Autism diagnosis.  I had speculation that Noah was on the spectrum all his life but was so on the fence - I'd be sure one day, and sure he didn't the next - that I didn't pursue it until recently.  Nathan I always knew was on the spectrum from the time he was 18 months old.  But when you actually HEAR - "your child has autism" it's like a punch to the gut, and a kick to the head.   Because - weirdly enough - when it finally comes down to hearing - yes - yes it's true - you start to think how everything is different now.  When - really - nothing is different.  They are still my kids.  I still love every ounce of them and wouldn't change them for the world.  But I have to carry the knowledge that ...  Noah and Nathan may never find love, or have kids, be parents, they might never be able to live by themselves....  and that's NOT just because of the autism but their separate medical issues, together, as a whole.  You see people with autism lead very good successful lives.  I'm not blaming that on the autism.  But it does weigh in.  KWIM?

My kids are druggies .....  this is their basket of what they hit on an almost daily basis.

 The first pic is of the boys nightly meds.  Nathan's is in the pink one, Kaedyn is in the green one.  Nathan has more pills than Kaedyn.... I think ... let me think a second.  Okay - so he has 5 pills and 2 half pills, so that's 6 right?   Tech.  Kaedyn takes six.  Nathan's is still MORE .. bigger pills.  And I have to grind it all up .....   and you like my notes in the med basket, one is when his G-Tube was changed, one is the last time I opened a new extension ... and one is what liquid meds he gets.

Liquid meds and crushed pills - ready to go in the G-Tube.....

I wasn't going to ask but I would be awful grateful for any prayers, positive thoughts, whatever you believe in sent Nathan's way. He hasn't been feeling well all week... he's been in a lot of pain (teething, migraine, ear pain) .... he's been vomiting off and on for the past 48 hours. Tonight we noticed that his right scrotum/testicle is very red and swollen again. His actual testicle is very large which is not normal - it's never been swollen to the size it is right now This is what landed him in the hospital in May (however we believe the sepsis was actually caused by an antibiotic he was on - but that is just an educated guess at this point.) .... He is NOT running a fever right now - which is going to be the tipping point. We know that if we take him in, we'll be sent to Seattle for them to evaluate him, and last time the only thing that held them off from hospitalizing him last time was the fact he didn't have a fever. So we know that THAT is the tipping point. He says it's sore, and it hurts, and we're keeping a close eye on it and taking progression pictures that will only be shown to the doctors. I ask that this is just a set back, something he fights off himself. This is the same testicle that was caught up by his hip until about a year ago and we were told could become cancerous. Suddenly he has all these problems with it. Just hope this is becoming a new "normal" for him and nothing else. It's scary though.

His Epididymitis is back.  I can't show pictures ...  but he's really swollen.  REALLY swollen tonight.   

This is basically what is going on .... 

This is starting to become a chronic thing :(  

Light It Up Blue for Autism Awareness!

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If you didn't already know .... yesterday was Light It Up Blue for Autism Awareness Day.  I shared some of Nathan's story in the post prior to this one.

Nathan is a brightest shining star in a moonless sky.  He is still a very happy boy but he's so often stuck in his own world.  It's hard to get his attention - he ignores you for awhile.  Saying Nathan ten times doesn't cut it.  No... I have to do the whole "1 ....2.....3...." thing to get his attention.  The whole counting system works with him.  When I count, he realizes that I want his attention right away.  He's constantly sucking on his shirt (as you can see in the above picture) or has something in his mouth.  He went from putting his head down on the floor and turning in circles, to flipping.  He'll flip on anything that he can flip on.  It was the bunk bed, he'd grab onto the boards on the bottom of the top bunk and flip on those.  Splinters were not his friend.  He also flips on the closet rod.  We had one that hung from the upper rod creating a second - lower - rod.  Well, that wasn't for clothes - no - those got dumped on the floor and he'd flip on there.  He had his own uneven bars - only it was one bar...   and currently - we got him a little trampoline ... so he mostly flips on the handles...

Oh right ... and his toes are his FAVORITE part of his body to suck on.  Nathan's favorite thing to do is to be watching videos.  On the computer... and on the cell phones.  He will just sit on the couch or lay on the trampoline and watch videos.  If the computer is available ... he'll be watching youtube on there.  His favorite things are funny Cats, Mario, Yoshi, Kirby and other video game things... oh right, Minecraft and Roblox, too.  He watches walk throughs or silly things that kids do with toys ... whatever he can.

He doesn't flap, but he will rock.  He hides in cupboards and mostly under blankets or in small areas.  When he's really upset, he'll go hide under his bed.  He makes eye contact... sometimes, but I have seen him make less and less eye contact as time goes on.  Usually, now, if I want him to look at me, I have to tell him to look at me.  Otherwise he makes contact for a moment or two, and then looks away.  He is constantly on the move unless he's watching youtube.  When he's watching youtube or when he's sleeping is about the only time he isn't moving.  He won't eat things with certain textures or taste.  He won't eat potatoes, very rarely eats french fries.  He avoids red foods like crazy, spaghetti sauce, ketchup, juice that's red.. if it's pink, he *might* eat/drink it.  The only red thing I've seen him eat is red popsicles.  He isn't a dipper.  He won't dip anything in sauces.  If sauces or dips are on his plate, he'll refuse to touch it.  His go to food is chicken nuggets, especially if they are from McDonalds.  He also loves peppers, carrots, celery, grapes, and bananas.  And Lucky Charms is referred to as "Nathan Crack" .. he will eat Lucky Charms all day long.  Of course, he will only eat the marshmellow..  and might eat the cereal but mostly that gets thrown or dumped on the floor.  Bananas were a huge achievement!  When he started out in pre-school, I told his teacher not to even try to give him bananas or he'd throw up.  Well, I went to get him one day and she pulls me aside and says "So we had bananas today, and we asked Nathan to try it."  I snickered under my breath and asked her how that went.  She said, "well, he threw up."  She smiled at me and said, "next time I'll listen to you."  But we do continue to offer and let him try stuff.  Eventually one day, he picked up a banana and had no problems, now he loves them.

Speech is a huge issue.  He is "non-verbal" ... but I don't like to say that he's non-verbal because he does talk.  He makes sounds, he says words, he likes to sing and carry on conversations with himself.  The problem is that you can't understand him.  If you've never been around him - chances of understanding what he's saying is about 10% ... Family and friends that around him have about a 50% chance.  We understand him mostly when he's repeating stuff we say (that's like cheating though, right?)  ... or when he's giving us a clue (like pointing at something).  He has a few clear words.  A lot of the time though, we have to play twenty questions.  And it's yes or no questions.  It's a process and it royally frustrates us all, especially him.  He has a Pod (one of those books with the pictures in it - where you point to the picture) ... but he doesn't like to use it and it confuses him.  We knew that the best thing for him would be an electronic device.  And so last May he went through the process to get one, and took to it right away ... he was a champ at it in a matter of minutes.  However, after a snafu of the paperwork getting lost in in cyberspace ... and finding out they never got it after months of waiting to hear if he was getting it, and having to resubmit everything - we find out it's been denied.  That broke our hearts.  We're appealing the decision but I just have a feeling that they won't cover it and we'll have to pay for it out of pocket and I just don't know how we're going to be able to do that right now.

So ... that's a little peek into who Nathan is...   he is my superhero :)

We spent today in blue for Nathan.  For Noah and Kaedyn who both have Sensory Processing Disorder (as does Nathan) ...  and for all the other kids we know who are on the spectrum and all those we don't know.

 We are always impressed with those who Light it Up Blue for Autism.

 I leave you with the 2013 Light it Up Blue PSA  :)

Germs BE GONE!

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I haven't updated, AGAIN .. in awhile...  because between everyday updates & everyday life... and all the dang germs and sickies that have visited the whole house over the past month, well it's STUNK... let me just say that.  Lysol has become my best friend and everyday it's even remotely warm enough to have the windows open, they have been!

Things are going along okay there, there isn't a ton to report.  Okay ... maybe there is.

Calahan is doing well.  He's had a major growth spurt and we had to go shopping for a whole new wardrobe for him, pretty much.

Noah is also doing well.   He's been sick several times in the past month.  All is well right now though.  Can't seem to get rid of the sick looking eyes.  When he's got the dark patches around his eyes I always feel like he's about to be sick.   We recently had to go get a new cage for his guinea pigs because one of them HAD BABIES!!  Yep... but Noah never passes up a trip to the pet store.   He was named 100% correct.  He would bring them all home if he could.

Noah still complains about his legs and his heel cords a lot.  We have an appt with Dr. J soon and he'll let me know if he's going to have to be casted, and again, I'm sure it'll have to wait until after we move.  So we'll have to find an Orthopedic Doc ASAP out there.... 

Nathan, oh my my Nathan.  He had his follow-up for his hypospadious surgery several months ago.  (Really sucks that the DR doesn't come close and we have to travel to tim-buck-too just to see him.) ...  Everything looks great, he said.  Nothing like traveling 2 hour one way for a FIVE MINUTE APPOINTMENT... grrrrrr.   Anyway...  upon finding out we're moving, he said "find someone out there to finish it" ... great.  Because he doesn't want to do the surgery and see him before we leave, then hand off care to another DR .. we have to go through the whole process again, meanwhile, his urinary tract is at the top and underneath of his boy parts (not the bottom at the tip).   While we were there, genetics wanted to draw another lab (well I did too) for another genetic link to R.S.S. ... so literally, it was about 15 minutes in the clinic for 4 hours travel.  The blood test we just added to the day since we were there.  Lovely.  Anyway ... we got the results back.   Everything was normal there. It frustrates me, I don't WANT him to have it, but I KNOW he has it.  And only about 10% of the kids with R.S.S. have the genetic link to back up the diagnosis but I just wish that were the case for us.  He fits R.S.S. so well, practically text book, but we can't treat him as if he has it yet, because he hasn't been formally diagnosed.   I want to make it to the conference in IL this summer but I don't think we will make it this year because there will be the leading expert on R.S.S. there, and she will see and diagnosis patients, and we won't have the money to get down there.  I could do some fund-raising, but... I don't know...

Before I forget, We realized about a month or so ago, that Nathan broke a tooth :(

And onto some happier news...

In other news, I think we're not going to take him in for the follow up Autism testing, and just wait to continue until he gets older.  He's still showing, what I feel, are strong signs ... but I'm thinking more like Asbergers, then Autism.  I'm almost certain of that too.  He has major sensory issues though.  I am thinking when we move and find our place, we're going to get sensory swing for him.

In other news, he's about to turn 3 years old and his speech therapy (through early intervention) is ending.  :(   Which means, we'll have to find speech therapy services for him after we move, and he'll be getting assessed for Head Start (Preschool) when we get out to Washington.  We're going to go ahead and start the process here though.

His things right now are wearing socks on his hands, usually he's barefoot but lately he's been wanting socks on, then eventually the socks move from his feet to his hands, he complains about short sleeves (but not ALL the time anymore) ...  He still flips on his head and walks in circles on his head, and stands on his head, and folds in half when he doesn't want to be bothered with...

Speaking of Speech Therapy .....

Kaedyn's going to be starting speech therapy because he's picked up talking from Nathan.  LOL...  They both speak Nathanesse... and even though Kaedyn jabbers A LOT ... he doesn't SAY anything.  Well, he says Momma, Dah, Up, Go, Ut-oh ... and that's about it.  Go is his newest one.  He is such a funny bub though.  So I will catch Nathan and Kaedyn sitting side by side yabbering back and forth, talking like people with twins say their twins communicate in their own language.   So he is starting Speech Therapy in about 9 days.  This Tuesday, Erika (speech therapist) is going to do the end of services evaluation on Nathan and the following week she's going to start with Kaedyn and do joint speech therapy for 2 weeks, and then she's done with Nathan and only coming for Kaedyn until we move :(

On another front - his eczema has good and bad days.   Right now, it's one of those "bad" times...
 SCRATCH SCRATCH SCRATCH....

See it all over his tummy

It's next to impossible to find shoes for his HUGE Hobbit feet.  He didn't get his first pair of shoes until AFTER he was a YEAR old... and we found those at Payless. We call the pair we got him the "Magic Shoes" because we tried on the same brand, style, different color, and they didn't fit!  Anyway...while shopping with Cal I saw 2 pairs of shoes that I thought *might* fit him...

So I tried them on him and to my surprise and HAPPINESS they FIT!!!!!!!! YAY!!!!!!!  Both pairs too!!  Kaedyn doesn't like the Lion King ones much though, it seems, and Nathan is non-discriminating (they were both in size 4 1/2 and now Kaedyn is in a 5, Nathan's still fit his feet but he's gonna need to go into a 5 too soon, in the pic above (of him putting shoes on) he had the Lion King shoes on, the pic was a few days after the first time he did it.)   Anyway, Nathan immediately took the gray ones and had me put them on him...

In other news, I've been adding older videos of Nathan onto YouTube....  here are the first three I added, from when he was about 3 months old.... you can hear his clicky breathing because of his cleft palate